Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: Android on June 28, 2018, 08:05:48 PM
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Yes, that's right. I'm in Russia.
About Me
I learned about cosmetic limb lengthening maybe a decade ago, most likely late at night, seeing what the internet can tell me about height increase. I found the old forum, and during those days it seemed as if every other patient was going to Beijing, as it was the affordable option at the time. I read into the surgery a bit back then, but not too much in depth since I was a busy student with a girlfriend. My mind was occupied and I didn't feel the need for the surgery, so I forgot about it for many years.
Fast forward to around 2017, and I was looking into increasing my height again. After a couple long (and one short) relationships, I was single. I've been at the same job for a few years, and while it paid well for the amount of work I had to do (there were weeks that I'd just surf the web), I didn't feel that I was growing professionally. I began to spend a lot of time on this forum, learning and planning.
I told my mom about it pretty early on. She was at first hesitant, but later agreed that this would be good for me. She's quite short herself at around 159 cm (4'11"), and confided in me that she too wanted to be taller--like her mom--when she was younger.
While planning, a couple things happened. First, I met a girl. She's beautiful, intelligent, ambitious, and thoughtful. Then I got approached for a job that would pay considerably more. I decided that if one of those two things worked out, I'd postpone the surgery. Obviously they didn't pan out, but I'm still in touch with the girl, so we'll see what happens after my journey.
Why Doctors Solomin and Kulesh?
Let's get the obvious one out of the way: the price. The dollar is quite strong compared to the ruble right now, so it's an advantageous time to look across the pond. I'm not particularly wealthy, nor do I want to take on debt, so doctors overseas looked particularly attractive.
My shortlist for a time was Dr. Solomin/Dr. Kulesh, Dr. Parihar, Dr. Birkholtz, Dr. Giotikas, and Dr. Mahboubian. I didn't contact all of them, but their combination of experience, reputation, location, and price were what made them attractive to me. After exchanging emails, the expertise and punctuality had the most impact.
With a starting height of around 163 cm, I wanted to lengthen both tibias and femurs. Only a few offered cross-lengthening (good primer on the method here (https://legslengthen.com/services/cross-lateral/)), and Dr. Solomin's reputation both on the forum (specifically Overdozer (http://www.limblengtheningforum.com/index.php?topic=1671.0), badwolf (http://www.limblengtheningforum.com/index.php?topic=2672.0), and later Jim_dabarber (http://www.limblengtheningforum.com/index.php?topic=5016.0)) and among his peers sealed the deal for me. He co-created the Ortho-SUV hexapod (http://ortho-suv.org/) (the "S" is for Solomin), wrote the book on external fixation, and the forward was written by Dr. Paley (https://i.imgur.com/B05ltz7.png). That was enough validation for me.
Contacting the Doctors
I emailed both Dr. Kulesh and Dr. Solomin for the first time in January 2018, with the same emails in the doctor information threads. For the most part you will be talking to Dr. Kulesh; in fact, I've yet to receive an email from Dr. Solomin, aside from the occasional out-of-office reply.
My impression is that Dr. Kulesh is punctual, to the point, and helpful. He seems to work late often, so I was surprised when he'd email me past his midnight.
After a couple dozen emails, Dr. Kulesh and I decided when the surgery would take place: late June. He asked me to remind him a month before I arrive and to ask any questions that I may have before then.
Sharing My Journey
I've told several people in real life about my journey. I've told my mom and around six friends. My mom has shared it with her closest friends as well, including her church pastor (who is surprisingly very positive about this idea).
I told my friends after my plans were in place, so it was matter of fact. I wasn't looking for direction, just telling them that my real reason for moving was for my surgery.
So far the reactions are at first surprise, curiosity, then support. No one has said that it's crazy (at least not to my face!), and they're looking forward to seeing the new me.
There are some people that I'm really close to that I haven't told yet, because I can't imagine their reaction being that great. It's harder for me to share with men, especially if they're about my height. I don't want to seem like a "traitor," as silly as that sounds. I haven't told my dad yet either, since he's a tough guy that managed to combat height neurosis with a strong--and sometimes abrasive--personality.
It won't be a secret for long, so I'll cross that bridge when I get to it!
Preparing to Move
I decided to stay in St. Petersburg for the entire duration of the lengthening phase to maximize the success rate. So I had to quit my job, sell all my things, and completely change my life. It was tough, but it wasn't too bad in hindsight.
As for the job, I told them half truths. I said that my mom's living alone in Japan, and I'm an only child, so I wanted to help her out in a time of need. All of that is true, except that she doesn't quite need my help so badly; she just wants me to help her create side gigs down the line. I liked my coworkers and didn't want to burn bridges, so this worked out fine.
The logistics of completely selling my accumulation of stuff was pretty stressful. I didn't start selling things until a couple months before the move, so it's really my fault. I used Facebook Marketplace (had the most success here), eBay (best for big-ticket items), letgo, and Craigslist (large furniture) for all my sales.
I was planning to sell my car, but my dad offered to fly to me and drive it back home. He's several states away, but likes to drive so it wasn't a big deal for him. It also allowed me to pack some things I wanted to keep for my eventual return.
Payment
This was a huge headache, as both Pope (http://www.limblengtheningforum.com/index.php?topic=8963.msg91027#msg91027) and shortygirl (http://www.limblengtheningforum.com/index.php?topic=8969.msg91236#msg91236) already mentioned. I was naive and arrived without a ruble to my name, since I could use the ATM for small purchases and pay the doctors with PayPal, an accepted payment method according to their files.
But! PayPal has recently become more strict, and payments to Russian accounts are unreliable. My payment to Dr. Kulesh was blocked almost immediately, and he also got the failure message. I then tried to wire the money, but it takes several business days, so it's not ideal if your surgery date is soon after arrival.
So next I tried Western Union. I tried to send it directly to Dr. Kulesh, but I didn't have all the details (his address), so I had the bright idea of sending it to myself. Unfortunately that was blocked as well.
So then, ATMs! I found a few down the street, was able to withdraw 9000 rubles a few times. Then I got an error, so I hit another ATM. Got a few thousand more, then another error. Called my debit card company (Chase), and they informed me that I hit my daily $500 withdrawal limit. They allowed me to temporarily increase my daily limit to $1000 for a week, so I got some more rubles after the call. Be sure to only use a debit card, as you'll get a hefty charge for cash advances with a credit card.
However! I didn't have enough days to gather the required funds. So I tried Western Union again, this time for $2000 worth of rubles via debit card... And it worked! I walked to three banks listed on the Western Union site, and the doors even had the Western Union logo on it, but they turned me away. Found a place right across from MEDEM (the private clinic) called Alfa-Bank, and was able to transfer rubles on the same day. It's inside this mall on the first floor (https://goo.gl/maps/A1zsb5P2cSq), go inside past the escalators and it'll be on the right side (not the one right by the entrance!). Here's a business card:
(https://i.imgur.com/DcNz60gl.jpg)
This was a stressful few days. If the rates and fees are reasonable, I suggest transferring your home currency to rubles before you take off for Russia.
As for paying the doctors, I finally did this yesterday after all the consultations and tests. I hadn't paid a ruble before that. So far I've given only the advance payment of 240,500 rubles for step one of the surgery (i.e. putting the frames on).
Prepping for Russia
As much as you think you're ready, you won't be.
For the visa I got it processed at a local Russian visa agency, Rush In Documentation Center (https://www.yelp.com/biz/rush-in-documentation-center-west-hollywood). It was quite easy, and it felt more secure than sending the passport myself. It cost about $500 for a 3 year multi-entry visa (https://waytorussia.net/RussianVisa/3-Year-Russian-Visa-US-Citizens.html), which is only applicable for citizens of the United States.
Be sure to have the right power plug adapter for your devices. I bought myself a compatible adapter (http://a.co/cAun9Rw), but it's pretty awful since the shape is all wrong for Russia; it's a square peg trying to fit into a smaller circular outlet, so the adapter keeps falling out. I'll need to buy better ones online, like this one (https://www.aliexpress.com/item/New-Arrival-2016-Best-Price-Universal-UK-US-AU-to-EU-White-European-Charger-Power-Socket/32770043802.html).
I asked my mom to get me a power strip (with USB ports if they have it), and she came through beautifully: no more adapters popping out with any small movement! I plugged my power strip from te US into it and it admittedly looks a bit crazy now, but it works. Quick note, I can buy things for myself, but asked mom since I'm in a hospital room now (more on that way below).
(https://i.imgur.com/awBnJdZl.jpg)
I brought my Nintendo 3DS, but the charger doesn't work even with a plug adapter! I found a couple stores selling the handhelds but not the charger, so I'll have to get it online (I recommend AliExpress). I recommend getting the USB charger cable if you have one, I unfortunately donated it during the move.
Only clothing I brought were shirts (around 10), underwear (5), socks (4), shorts (3), pants (1), and jackets (2). Brought one pair each of sneakers and sandals as well. Toiletries like toothbrushes and shavers are a given, but be sure you bring your favorites like toothpaste and deodorant since you might not be able to find one that you like. I had this problem, but luckily you can find Old Spice here.
I also bought some awesome pajamas from Uniqlo called Ultra Stretch (https://www.uniqlo.com/us/en/men/loungewear/lounge-sets). They're extremely stretchy, so they should be able to accommodate frames. I'll probably need to cut the cuffs, we'll see soon enough.
Supplements
I was concerned about nutrition, so I stocked up on protein powder. First, I've been consuming Schmilk (http://superbodyfuel.com/shop/schmilk/) (I like chocolate flavor) for a couple years now, which is a nutritionally complete meal in powder form; just add milk. I won't be completely replacing meals, but it'll be a good supplement.
Losing weight due to muscle atrophy is common, so I bought weight gainer protein powder as well: Optimum Nutrition's Serious Mass (https://www.optimumnutrition.com/en-us/product/serious-mass). We'll see how well this works, I really liked Gold Standard whey while I was hitting the gym.
I bought some supplements for bone growth as well, Vitamin Code's Grow Bone System (https://www.gardenoflife.com/content/product/vitamin-code-grow-bone-system/). It has the nutrients that I was looking for, namely vitamins D, K, magnesium, and silica. I'm hoping that this helps in the long run.
Flight to Russia
Pretty normal stuff, flew via Aeroflot. Food wasn't too bad. In-flight entertainment was extremely slow, I audibly and visibly saw a woman getting frustrated with it. Airport bathrooms were filthy!
Worthy of mention, wear a hygienic mask if you can. They're cheap, and Dr. Solomin & Dr. Kulesh won't operate on patients with influenza!
St. Petersburg, Russia
This is a beautiful city, especially this time of year. June through July is what they call White Nights, in which the sky remains bright even throughout the night. Here's the city at 1 AM:
(https://i.imgur.com/wp4aemql.jpg)
I picked a relatively expensive time to be here, since it's also during the FIFA World Cup. Silver lining is that the city is very lively now, and it probably helped restaurants prepare English menus. Not too common, but they're around!
Speaking of costs, this is a much less expensive city compared to Los Angeles... Even in the city! Draft beer can cost around $6-8 in LA, but it's under $3 here in SPb. I was worried that I'd dislike the food, but everything has been delicious (and affordable) so far.
ATMs are everywhere, so you won't be stranded for cash as long as you have a Visa or Mastercard debit card. Many restaurants take card, and they even bring their card reader machine to the table.
Tipping is sometimes included, so be sure to read the receipt first. Tipping isn't necessary, but it's becoming more common, so I leave 10% in cash (you can't tip via card). So be sure to get some smaller bills when you can.
Accommodation: Pre-operative
My mom came with me, and will be with me a few days after surgery, so we had to get a place that we could share. Hotels are expensive right now, so I only stayed at one for a couple nights, since we landed past midnight; a bit difficult to find a 24-hour Airbnb.
Another merit to staying at a hotel is that they'll register your visa without breaking a sweat. Registration of a visa is strange: basically you have to register with your host within your first week of being in Russia, there's no cost to you. Be sure to do this, as failure to do so will mean fines and/or (though rare) deportation.
After that we relocated to a rental I found on Airbnb. It cost just over $1000 for two weeks, and it's in the heart of the city. It's also in walking distance to MEDEM, which made it convenient. This apartment was obviously newly created for short-stay users, since there were a few similar units next door inside a comparatively old building.
(https://i.imgur.com/s24QAb5l.jpg)
(https://i.imgur.com/p6iI6lTl.jpg)
Getting Around
At first I thought I'd be using Uber, but it turns out that the local market is more saturated with Gett. I had no idea what it was, but I saw ads in the airport and decided to give it a try.
If you've used Uber, it's pretty much the same deal. Gett is cheaper though, so I recommend using it if in Russia.
X-rays and Tests
The day after I landed, I went to RNIITO to get x-rays by Dr. Nikita, who works with Dr. Kulesh. This was about 35 minutes away (15 km or 9.3 miles) from where I was staying; this cost around 718 rubles ($11.40). I initially had some trouble on seeing him since the hospital staff didn't speak much English. After using Google Translate, showing emails, and of course name dropping, they managed to find Dr. Nikita for me.
(https://i.imgur.com/qdWWvqsl.jpg)
Dr. Nikita spoke some English, so I had an easier time communicating with him. He walked me through corridors to get to the x-ray room, and I was asked to take my pants off. We took some long film x-rays while standing, and then I laid down for some tibial x-rays. Dr. Nikita said he'd email the results to Dr. Kulesh, then he walked me out. I think I was there for 30 minutes or so total.
(https://i.imgur.com/YXfcw63l.jpg)
(https://i.imgur.com/huj6ez7l.jpg)
Since I have a birth defect of the heart, I was recommended to see a cardiologist. Dr. Kulesh scheduled an appointment for me at MEDEM, so I headed back to the city. After some paperwork and waiting for a few minutes, I got a cardiogram and got the results right away. This cost me just under $25.
(https://i.imgur.com/IH1IsuBl.jpg)
Consultation: Dr. Kulesh
The very same evening I went to see Dr. Kulesh at St. George's Hospital. Very nice building, much newer than RNIITO. After some more Google Translate, I was able to find Dr. Kulesh's office, but there was another person waiting outside his door. There was already another patient inside his office as well, so I waited about an hour or more before being seen. Luckily they had Wi-Fi, so I was able to kill time pretty easily.
(https://i.imgur.com/ns79Kvdl.jpg)
(https://i.imgur.com/O9lrjI1l.jpg)
At last, meeting the man himself, Dr. Kulesh! We talked about my goals, method, timeline estimates, and recommendations. He showed me a handful of patient x-rays and photos to give me a better idea of what's to come, and the first patient was Jim_dabarber! He said that Jim is a good patient, and that he's doing very well with physiotherapy.
The doctor also shared stories of non-compliant patients, like a person who flew home one day post-op (!) and decided to lengthen 3 mm a day (!) because he was in a hurry. In the end the doctors were able to help him to recovery, but it was a tough one. Another patient lengthened 13 cm on his femurs and 7 cm on his tibias. Again, very tough recovery, and having joint problems.
He explained that they can only offer recommendations and guidelines, but if a patient is insistent, they will do it. But please, use some common sense. Those two guys mentioned above are not shining examples of good outcomes.
He also had a funny anecdote about patients wanting absolute perfection. One patient would scrutinize his x-rays, saying that one leg was 1-2 mm longer than the other. After correction, the nails were inserted since the method chosen was LATN; the meticulous correction wasn't fruitful, since jamming intramedullary nails will shift your bones a little bit. In the end there was minor discrepancy, but the mechanical axis was good, and the patient was happy with their result.
Another patient had curvature problems with their femur, which was not detectable from the outside. During lengthening the patient became concerned, Photoshopping the x-rays to straighten the femur, to say that is the result they wanted. Local doctors were also concerned, saying it should be fixed. However, the mechanical axis of the bones were good, so it was a non-issue. And again, it was undetectable from outside the body.
As for me, I currently have near-perfect mechanical axis, very slight valgus deformity (3-4 mm) at the knees. Right femur is around 47 cm, left within 4 mm of that. Right tibia is 36 cm, left is within 2 mm of that. I've tried to measure my own legs before and I was waaaay off, so keep that in mind.
We talked about methods a bit. He does not recommend LON at all, because of the higher infection rate. He had one patient with deep infection, and said "one is enough." Therefore he prefers LATN, but his utmost recommendation was conventional Ilizarov without intramedullary nails. Yes, the patient will have to wear the frames for a while longer, but it has the best outcomes. Unfortunately it's not a reality for many, especially for those who travel abroad on limited visas, so use your best judgement.
He prefaced this by saying that it's only his opinion, and that the final judgement comes down to the professor (Dr. Solomin), but that he does not think that weight-bearing during lengthening is beneficial. He was also inconclusive about the S (or Z) cut osteotomy, saying that there's more research required.
We started talking about potential surgery dates and location. At first I thought my only choice was MEDEM since it can take 1-3 weeks to get an appointment at the municipal clinic, St. Elizabeth's Hospital. However Dr. Kulesh said it's possible and that he'd get back to me on it after he talks to the professor. We made loose plans on when I'd get to meet Dr. Solomin.
Which Clinic?
The very next day Dr. Kulesh let me know that they can book a room on Friday, June 29. I was mentally prepared for MEDEM, with its fancy architecture, hotel-like rooms, appetizing food, and English-speaking staff... But I originally asked for the municipal clinic, so I agreed.
Until then, I rounded up the advance payment, got an x-ray of my femurs, and met Dr. Solomin back at RNIITO. Dr. Kulesh was there as well.
Consultation: Dr. Solomin & Dr. Kulesh
Again with the help of Google Translate and patient staff, I was able to find Dr. Solomin's office at RNIITO. This time my mom came along.
While waiting, Dr. Kulesh arrived. A few minutes later, I saw Dr. Solomin briskly walking down the hallway. He was very energetic, and offered us coffee or tea, which he made for us. He started off by apologizing, that he has a lecture that morning, so that he'll have to leave in a few minutes.
He mentioned that while he was quiet, he has been reading my emails. Dr. Kulesh pulled up x-rays, checked my mechanical axis/lengths/diameters, and said it looked fine for LATN.
He then disappeared for a while for his lecture, which was about fractures of the femur for about 16 other doctors.
When he came back, we talked about my goals. I said that my wish is 7 cm femurs, 6 cm tibias. He said his recommendation is 10% of the starting bone length, and I told him yes, that was just my wish. He added that after we start lengthening, we can see how my body responds. If the femurs can get to 7 cm, then to 8 cm, that's fine by him. Dr. Kulesh added that a patient once came in for lengthening, and a day after surgery changed their mind, saying that they just want the bone back in one piece; you really don't know how you'll react to such trauma.
As for when we could start the next set of legs in the cross-lengthening journey, Dr. Kulesh recommended a year apart. Dr. Solomin said as soon as the bones look consolidated via x-rays. Dr. Kulesh admitted that only one patient has ever taken his advice, adding that they had a great recovery.
I asked how many patients he has worked on. "Thousands. Perhaps finally, you will be my first successful patient!" Really, he was a charming guy. He talks very fast, and when he was lecturing, I told Dr. Kulesh that she had a hard time understanding since he has an accent too. To which he replied, "yes, he can be hard to understand, he talks just as fast in Russian!"
My mom asked if they sell or recommend special underwear for patients like me, to which they said "our patients usually just figure it out." So yeah, think ahead about this one!
They let me know that I'll be checked into the hospital on Thursday morning, then surgery on Friday. It's Thursday evening as I write this.
After the consultation, Dr. Kulesh walked us to St. Elizabeth's Hospital since it's close by. Beautiful day, perfect weather. Once inside and up a few flights, Dr. Kulesh left us with Dr. Roslan (not sure about spelling), saying that he'll help me get some tests done while I'm there. Did a blood test, urine test, and cardiogram once more. We were done in under an hour.
(https://i.imgur.com/boY7zrzl.jpg)
Accommodation: Lengthening
Found a place a little north of the clinic which was affordable, just under $1500 for 91 days. Scoped the place out recently, there was a good restaurant downstairs that has free delivery until 11 PM. Score!
More about this place once I move in.
Preparing for Surgery
I was asked yesterday that I needed to shave my own legs, either the night before or on the morning of surgery. I have a lot of hair, so I decided to get a head start yesterday night.
Used my beard trimmer to chop away most of it, then used some shaving cream and a Venus razor to take care of the rest.
I haven't seen my nked legs in decades, it's a strange sight. It also feels very strange too. I'll admit that I've got some pretty legs!
(https://i.imgur.com/VvL5r1sl.jpg)
Moving into St. Elizabeth's Hospital
Got up early today and used Gett once more. I was asked by Dr. Kulesh to go to the emergency department and then call Dr. Roslan; it was a confusing few minutes for the staff since I came with two suitcases, a mother, and without an injury in sight. After a few minutes we saw Dr. Roslan, and we proceeded to my room.
(https://i.imgur.com/zwAxPVRl.jpg)
(https://i.imgur.com/pfJ25IGl.jpg)
(https://i.imgur.com/ab5vebUl.jpg)
I'll be staying here for two weeks, leaving around July 14th or so to the apartment I mentioned. So far I've had three meals, and while bland looking, I actually enjoyed them. I'm used to eating rice porridge, called okayu, which they served twice today. They gave me some cheese for dinner, which was pretty exciting. Thankfully I'm a small eater so I actually got full eating this, but I also get hungry really fast so I'm hungry again after only two hours. Mom left me snacks, but I'll be a good boy and abstain since you don't want a full stomach before surgery.
The rooms are more than adequate. Door from hallway leads to a common room, with a kitchen and separate doors to the bathroom and shower. Then there are two connected rooms, one of which I'm typing this from. The beds aren't very soft, but I've fared worse. I brought a memory foam travel pillow, and it has served me well so far when I want to sit and type with my back against the wall.
There's an older guy in the other room, no apparent injury, but is on IV sometimes. His meals are different from mine as well.
Just took a shower, it's pretty cramped and outdated. The handle on the side of the wall is practically coming off the wall, so I won't be able to depend on that. The shower head holder is made of plastic and is also coming off the wall, so I've really got to be careful. Actually, maybe they'll replace it if I break it...
Closing Thoughts
That's it for part one, while I'm still my old self. It's almost 11 PM and I'm getting pretty sleepy. Surgery after 9 AM tomorrow morning (June 29, Friday), still not sure when exactly really. Still pretty bright out, looks like dusk back at home.
Onward and upward!
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Which you the best for your journey!!
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Hey Android, I wish you the best! Thank you for this diary so far.
So will you be okay with ATL then if it has to be done ?
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Hello Android
You are such a friendly young man and deserve all the best.
I really wish you a safe and blessed journey.
May God protect you
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Oh my god, man. It's happening. Wishing you the best of luck this deterministic universe could possibly afford you.
If I can help you in any way with anything, you know where/how to reach me.
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You're so lucky your mom came with you!! Does the St. Elizabeth Hospital have wifi? I assume it has it since you are writing from there?
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Hey! Good to see you making the move brother! Best of luck and I’ll be following along on your journey hopefully things work out the best!
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Good luck android
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You can do it! I did Lon for 5.5cm. I am thinking of going to Dr. Solomin to do 5.5 on Femur next year.
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Finally! Good luck man. Might want to follow your footsteps by going to Russia.
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Android, you deserve all the best, have a successful surgery and recovery
So, you said you found an apartment which costs 1500 dollar for 91 days. That's actually cheaper compared to the price of rental houses in Dr kulesh's file. Did they help you to find that apartment? And your mom will probably stay with you during whole lengthening period,right?
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Good luck to your journey.
Stay strong!
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Hi Android! Wish you the best outcome man!
One question you said that you had meassured your legs before, and then you see that you were wrong can hoy tell us your before meassured, just to compare error.
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Wow Android! that's a great news!!. I hope the best for you.
I'll be waiting excited for your threads.
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Good luck Android...
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Wow Android!! You're there. It's happening!
Well deserved. I sincerely wish you the best!
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Wow the day has finally arrived! Good luck to you on your journey, Android.
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Good luck man! Will be following your progress!
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In my short time lurking here, you've been one of the most consistent and helpful voices.
Best of luck!
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Good luck Android! Wish you a painless journey :)
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Thanks everyone!
Mom arrived 40 min ago to see me but found out visitation hours start at 8 AM. So keep that in mind if you have visitors.
Let's answer some questions.
So will you be okay with ATL then if it has to be done ?
If necessary, I'll take my doctor's advice. But I'd like to give it my best shot with physiotherapy first and not rush into it, like what Body Builder went through (http://www.limblengtheningforum.com/index.php?topic=4266.0).
You're so lucky your mom came with you!! Does the St. Elizabeth Hospital have wifi? I assume it has it since you are writing from there?
Yep, very helpful to have someone here with you. She's leaving in only a few days, but still nice.
St. Elizabeth does have WiFi, but it's not free. It's 35 rubles a day (~$0.56), which isn't much more than buying a data SIM, so I followed Pope's advice (http://www.limblengtheningforum.com/index.php?topic=8963.msg91027#msg91027) and got the same plan (https://imgur.com/a/V3g8QWk) for $11/mo. Set up tethering/hotspot via my phone and using my laptop.
So, you said you found an apartment which costs 1500 dollar for 91 days. That's actually cheaper compared to the price of rental houses in Dr kulesh's file. Did they help you to find that apartment? And your mom will probably stay with you during whole lengthening period,right?
I found my apartment on Airbnb by myself, it's just north of the SPb border in Murino. Tons of housing there in very big complexes, so that's probably why it's cheaper.
Dr. Kulesh was busy, and working with a realtor seemed like a hassle, so I just looked around until I found something decent. Only had a few rules: standing shower, elevator, ramp to entrance of building, and kitchen (mainly fridge). Sent a request to one that looked great, unfortunately they said it wouldn't be good for a person with disabilities. Second place confirmed that it was wheelchair-friendly.
Mom's going home on July 2. The original plan was to get surgery last weekend at MEDEM and her visit me for about a week. She's got her own life going on, so this is fine with me!
One question you said that you had meassured your legs before, and then you see that you were wrong can hoy tell us your before meassured, just to compare error.
I watched some YouTube videos on measuring bones like this one (https://www.youtube.com/watch?v=yVm0o8KG2NU), but I was way off. Exact measurements were via x-rays.
Alright, mom's here. Surgery not too long from now I think, see you guys on the other side!
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If your mom leaves on July 2, may I ask who will stay with you in Russia? Have you hired an assistant?
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Nice reading, what was the overall cost of cross lengthening with Solomin&Kulesh?
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I wish you all the best Android! God knows you deserve it!
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I share your height, your goals and your desire to change. I wish I could've been your mate through this journey, just not my time yet :)
I admire you a lot, and I'm sure you will success throughout your journey to a better life, you definitely have the motivation, wisdom and awareness required to face this life-changing experience. I love the way you write things down and the extreme precision you put into details. And the pictures just add that bit of real life contact which most diaries lack of. I can feel this is going to be an outstanding and entertaining diary :)
for informational purposes could I ask you how much money you left your country with and how much money you estimate you're going to spend for the whole journey, all inclusive? I was already thinking about following your exact same path: same lengthening method and same places, so that would be very useful to me.
You should be just done with your surgery now, I'm sure everything went amazingly, looking forward to reading your updates :)
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Hey everyone, will reply later since I'm on my phone, but just wanted to say that the surgery was a success! Back in my room and no pain so far thanks to the anesthesia, I'll write in more detail later.
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Thank goodness!!! Soooo glad to hear that!!! Take care!!
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Holy crap I don’t look at the forum for one day and I come back and Android is in Russia. This surgery has been a long time coming brotha I’m really happy for you.I’m glad the surgery was a success. Get some rest and keep us updated when you can.
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First of all. I'm glad that the surgery was successful!
As for when we could start the next set of legs in the cross-lengthening journey, Dr. Kulesh recommended a year apart. Dr. Solomin said as soon as the bones look consolidated via x-rays. Dr. Kulesh admitted that only one patient has ever taken his advice, adding that they had a great recovery.
How long do you want to wait ? And how long will you have to wear frames in total if no complication occur?
what kind of methods have you decided for? (LON/LATN/Ilizarov)
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Android, why did you choose Solomin over Giotikas?
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F*ck yes dude. All the best! :)
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Good luck Android ! Wish you a very successful journey. I am sure that this diary is going to be very informative and it will help future llers a lot.
Regards
Cr7
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Wishing you all the best and hope you achieve your target. Stay strong bro!
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When you say exhange the money before you get there - do you mean as in change your currency into ruble and take it in cash so when you get there you pay in cash?
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Hoping we can get some news as soon as it is physically possible for you...
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Awesome detailed diary so far Android! I'm really excited for you, and glad to hear the first surgery was a success! Looking forward to hearing more about it.
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Just wanted to pop in and say that I'm still doing well. I'm off epidural anesthesia now, so life's a bit tougher. I've made notes along the way, so I'll write them out in detail later. Thanks for all the support!
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Hello Android,
I was the one who was with Dr Kulesh when you came to meet him - i'm now in saint elz. clinic doing external tibia - 6 days post surgery. i'm planing to move soon also to an apartment. i don't know what is the condition of your visa but if you here in Russia wit a visa make sure that the apartment owner can do the registration for you - other wise you will be in a big big trouble. i'm also looking for an apartment through airbnb
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Android have you felt any since the operation if so how would you describe it on a 1-10 ratio other then that glad to see your doing well looking forward to hearing more about your surgery.
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Time to answer some more questions!
If your mom leaves on July 2, may I ask who will stay with you in Russia? Have you hired an assistant?
She left today, I'll be alone for the lengthening phase. I'll go back home after correction and nailing, repeat once bones are consolidated.
Nice reading, what was the overall cost of cross lengthening with Solomin&Kulesh?
So far I've paid the doctors directly 240,500 rubles, just as the document says (200k for surgery at St. Elizabeth, 40.5k for frames).
for informational purposes could I ask you how much money you left your country with and how much money you estimate you're going to spend for the whole journey, all inclusive?
Thank you for your kind words. I expect to spend just over $30k total, I didn't take any cash with me (but you should, about $5k is safe). Money is still in US bank, accessible via debit card and wire transfers.
How long do you want to wait ? And how long will you have to wear frames in total if no complication occur?
what kind of methods have you decided for? (LON/LATN/Ilizarov)
I chose LATN, so I'll only wear frames during lengthening phase. So maybe 70 days or so if all goes well.
Android, why did you choose Solomin over Giotikas?
Although Dr. Giotikas offers Precice and seems experienced, I feel more comfortable going with a doctor that has had positive outcomes. And hey, can't deny that the price is more attractive!
When you say exhange the money before you get there - do you mean as in change your currency into ruble and take it in cash so when you get there you pay in cash?
From what I've read online, it's better to take USD/EUR and exchange it at a Russian bank since they have better rates. Don't bother trying to bring currencies like Japanese Yen though, so convert at home if not USD, EUR, or maybe GBP.
I was the one who was with Dr Kulesh when you came to meet him - i'm now in saint elz. clinic doing external tibia - 6 days post surgery. i'm planing to move soon also to an apartment. i don't know what is the condition of your visa but if you here in Russia wit a visa make sure that the apartment owner can do the registration for you - other wise you will be in a big big trouble. i'm also looking for an apartment through airbnb
That's funny, I was wondering if you were there for CLL too! I have a 3 year multi-entry, but I'll need to register my visa as well. I did it once at a hotel, I'm guessing I need to do it every time I change where I stay... Not sure. Hope to see you around!
Android have you felt any since the operation if so how would you describe it on a 1-10 ratio
Right out of surgery, no pain at all. Felt like myself, not even tired. First night was rough, called nurse three times. Second night, just once. Third night, which was yesterday, was absolutely awful since I'd been removed from epidural anesthesia in the evening. I'll write more about that in next entry now.
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Oh didn't know that the price is so cheap. May i ask you another question? I know it's an early stage but in your opinion what amount of money do you recommened to save for whole process (food/accommodation/extras etc.)?
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Thank you for your reply. Don't you think that it will be quite difficult to do dailly staffs with one broken femur and tibia alone there?
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I'm resting the laptop on my femur frame as I write this... Convenient!
(https://i.imgur.com/mZRdSewl.jpg)
Literally haven't used laptop since I made the first post. Been either using phone or sleeping. Time flies by.
FYI, I'm on Instagram as android_cll (https://www.instagram.com/android_cll/).
Forgot to link this in first post when I said:
"...wrote the book on external fixation..." (http://a.co/iTrKMiN)
Day 0: Night Before Surgery
Dr. Ivan, an anesthesiologist, came to visit me at night to briefly explain what he's going to do the next day in terms of anesthesia. Epidural catheter in my back, I said I trust him and that I'll see him tomorrow.
Day 1: Surgery
Here's me, enjoying crossing my legs for the last time in a while, waiting for my surgery.
(https://i.imgur.com/jn01ywTl.jpg)
Then without warning, three nurses came into my room in the hospital and told me to strip down. They said underwear too, so I made my mom turn around. They wrapped me in the blanket that was on the bed and rolled me to the elevator.
(https://i.imgur.com/iCvJJZol.jpg)
Went to the fifth floor, then carted across to another wing of the hospital. Asked my mom what time it was, 10 AM. Then she was told to wait outside.
(https://i.imgur.com/6MNLzDMl.jpg)
The operating room was pretty large, with a panoramic window that gave me a great view of the city. Russian pop music blaring on the boombox.
A little platform was extended from the operating table I was laying in, and had my arm placed on it. They installed an IV entry point, which I still have in me four days post-op.
(https://i.imgur.com/3VtKjLvl.jpg)
Exchanged WhatsApp info with Dr. Ivan, saying just message him if I have problems with pain. He then went over and turned down the pop music.
Got a nasal cannula installed, those plastic tubes that deliver air in your nostrils. I felt really nauseous, and I almost let someone know that I feel sick enough to vomit. Luckily it went away in about 20 seconds.
Dr. Ivan told me to lay on my side and to roll into a fetal position. Felt a tiny prick, but not painful at all, no pain after that. Legs started to get heavy, and I could feel my knees falling off the table so I let them know; a nurse rushed over to hold me in place.
I started to feel drowsy. They moved me so that I was laying on my back again, legs straightened, but my legs still felt like they were bent. Very strange sensation, like the nerves were frozen in time.
Fell asleep before seeing either Dr. Solomin or Dr. Kulesh.
Day 1: Post-surgery
No pain at all after surgery, I didn't even feel drowsy. I was wheeled back to my room, and the time was 2:40 PM.
(https://i.imgur.com/XUlybN0l.jpg)
They placed two metal apparatuses that elevated my legs. They use bandages to create a hammock of sorts for my legs to rest on, it's pretty comfortable.
(https://i.imgur.com/4Kljh1Gl.jpg)
I finally found out which legs got frames: right leg tibia, left leg femur.
(https://i.imgur.com/NDQZiF8l.jpg)
I was shivering, cold but not freezing. They brought me an extra blanket, which helped immediately. This was a side-effect of waking from anesthesia.
They hooked me up to a machine that slowly injects a syringe full of anesthesia over time. Each syringe lasts about 8 hours. Also had some fluids injected in me via hand IV entry point as well.
(https://i.imgur.com/OX9JmJ4l.jpg)
My toes started to move, at least on my right leg with the tibial frame. Mom touched my toes and I was able to guess most of them right. Femur side was not as responsive.
Got a whole laundry list of medications: Fraxiparine (https://chealth.canoe.com/drug/getdrug/fraxiparine), Cefotaxime (https://en.wikipedia.org/wiki/Cefotaxime), Perfalgan (https://www.medicines.org.uk/emc/product/60/smpc) to name a few.
(https://i.imgur.com/inC1BjFl.jpg)
Also taking a pair of Omeprazole (https://en.wikipedia.org/wiki/Omeprazole) capsules, once in the morning and at night.
(https://i.imgur.com/rXbA9Drl.jpg)
Before mom left at 5 PM, I was able to move my femur side toes. I could move my ankles as well, which the tibia side couldn't do.
https://www.instagram.com/p/Bknn1ynHERK/?taken-by=android_cll (https://www.instagram.com/p/Bknn1ynHERK/?taken-by=android_cll)
Dinner is at 6 PM, no trouble eating aside from having to eat slowly since I'm nearly horizontal. No nausea at all.
I felt muscle spasms in my femur leg once in a while, not painful. Just uncomfoirtable. Maybe happened six times.
Messaged Dr. Ivan at 7 PM, he said he'd come by in 3-4 hours to change the syringe.
Nurse came in at 8:15 PM to administer a shot right under my belly button. No pain, not idea what it is.
8:30 PM, she came back to give me an IV drip. Said to call her when bag is empty. I fell asleep and she woke me up to an empty bag at 8:55 PM, so keep in mind that it'll only take about 30 min. She swapped out a (probably) saline bag with a glass bottle of Perfalgan (https://www.medicines.org.uk/emc/product/60/smpc).
She emptied my urine bag at this point, it was shocking how much I peed since I can't feel a thing down there. For those who are against catheters... Get it! You do not want to be peeing your bed, because you won't feel the urge to go.
(https://i.imgur.com/PBfzyi3l.jpg)
30 min passed and the glass bottle is now empty too. Had nurse open the window since it was so hot; removed the extra blanket they gave me too. Nurse checked my temperature just in case, I told her not to worry via Google Translate because "I'm always hot."
Fell asleep around 10 PM. Woke up at 10:45 PM with some pain. Anesthesia was running out, but Dr. Ivan was on his way; good to have him on WhatsApp. What's strange was that the pain I felt was my ankle of the femur frame leg.
Topped up on anesthesia at 11:27 PM. Should last me through the night...
But at 12:30 AM, I felt VERY hot and nauseous. Left leg with femur frame started to hurt at the ankle, pain level 2-3. Waited a few minutes, called nurse. Two nurses arrived in a few minutes, opened window. They took my blood pressure and temperature, blood pressure was low. They suggested I drink some tea.
Then... Around 12:45 AM or so, my left leg started to hurt even more, especially the ankle. Strange, since no frames in the tibia; probably nerves from femur pins. I initially told nurse that the pain was tolerable, but by the time they brought back my tea, it pain level 5 or so, steadily increasing. She gave me a shot of anesthesia in my right thigh (she says it'll travel throughout both legs) and hooked me back up on IV. She used Google translate herself to say that the pain will get better in 20-30 minutes. Waited for it to kick in...
1:27 AM, nurse just left after removing IV. Still in pain, but it's better, still about 4. Hopefully it keeps improving. She told me to try to sleep. Asked if she ever sleeps, she chuckled and replied in English: "tomorrow, home."
Woke up again at 3 AM from left leg pain. Called nurse, she came immediately. Told her the same leg is hurting again, she left and came back with another needle for my right thigh. She said if I don't feel better in 40 minutes, ring again
She came again, can't remember if I called her or not. She said let's wait more since pain was going down a little. Then I was able to finally sleep until 8:15 AM.
Day 2: Not Too Bad
My mom came to visit with full energy while I was trying to catch up on sleep. After listeing to her troubles visiting me, I told her that I need to rest some more.
Felt some pain in catheter, just enough to know that anesthesia was wearing off. Got another top up and IV too, which is also a mild pain killer. I did't feel loopy or lethargic at all. Pain takes a while to go away, but it's not too bad.
However my back was killing me. There's a metal bar that goes under my back, right on the border where anesthesia doesn't reach (of course). Tried all kinds of ways to help with the pain, like using my memory foam travel pillow and even squeezing my hand under my butt. These methods worked okay.
(https://i.imgur.com/YV2qVbvl.jpg)
Napped for 90 minutes, very deep sleep without pain.
Lunch came around, main dish was soup so my mom transferred it to a mug so I can drink it easier.
Mom managed to ask around and find a cushion for me, one that's really thin so that I can slide it under my back. The difference is night and day, feels awesome! Still using it.
(https://i.imgur.com/EjsVqGel.jpg)
FYI, in above pic. My hand gets rebandaged after IV injection, and that clear tube is for the urinary catheter.
The other guy in the suite moved out. Picture of bed frame is his bed, but same thing as mine. Mom took the photo since I haven't left the bed yet.
Woke up from nap at 7:38 PM. Minor uninary catheter irritation and left leg with femur frame starting to hurt. Getting injection.
Dr. Kulesh came to visit me at 7:45 AM, just to check on me. He said I don't look terrible (he's a funny guy), and that he'll get my bandages changed tomorrow, July 1.
8 PM, I can move right foot (tibial frame) toes up and down, ankle in all directions, but not much. Left foot (femoral frame), I can bend toes downwards but not up, and can move ankle in all directions much more than right.
8:20 PM got a shot under my belly button. Small prick, nothing bad. Seems like it's time for an IV too.
She came back around 8:45 PM, put syringe into IV plug, and then hooked me up to IV too. Got a couple more pills, told me to call her once IV bottle is empty.
Briefly woke up around 11:30 PM and 12:30 AM due to discomfort with urinary catheter and also proctalgia fugax (https://en.wikipedia.org/wiki/Proctalgia_fugax), which I get from time to time. For those who don't know, it's a really strong pain right in the butt, which lasts around 5 minutes. I usually just get up from bed and writhe on the floor, but can't do that with frames. It went away, then Dr. Ivan arrived at 1:05 AM to exchange anesthesia syringe once more. I am very sleepy at this point.
2:51 AM, woke up from pain in legs, worse in right leg at the foot. Got an injection just a minute after calling nurse. First injection of the night, despite all this I'm getting much better rest than yesterday night.
Day 3: Heaven and Hell
6:22 AM. Well fellas, it happened... Morning wood. I think it started a little the day before, but it happened a few more times today, and for longer. Thank God for the pain killer, because I suspect this would hurt more with a urinary catheter inside. All I can do is think about random stuff or read the news to make it go away.
Dr. Ivan came in this morning to replace anesthesia syringe, also told me that he'll remove the epidural catheter in 7-8 hours. I misunderstood this thinking that he'd remove the urinary catheter, this would haunt me later.
So far I haven't had the need to go No. 2 (AKA poop), so that's a relief. Hopefully I'll be able to go myself soon enough.
1:55 PM Sunday July 1: first rebandage change by Dr. Kulesh and a very cute nurse. Some delays in getting extra equipment, just finished at 2:45 PM. Tibias were ok, but femurs were very painful. Dried blood stuck to pins and stitches equals pain. It's also strange to have a cute girl look at your flaccid catheter penis in all its glory before even knowing her name.
Here's how it looked before rebandage:
(https://i.imgur.com/fUlYnx9l.jpg)
Dr. Kulesh said that I didn't need to pay attention to the rebandaging, since this isn't the pinsite care that I'll be taught later. He suggests that a doctor do it once a week, saying that perhaps I'll be more inclined to follow his advice if Alice did it. I said to them that I'd be happy to do it five times a week if that's the case.
6:37 PM, anesthesia machine started beeping. Messaged Dr. Ivan, he said call the nurse, and that he'll come over later. It's 7:24 PMm, and it's really starting to hurt. Ahhhhh!!!!
Alice, the cute nurse, fixed the beeping after a few tries. We talked a bit, turns out we somewhat have similar backgrounds. She asked me questions, joked a bit... Very good for pain management.
Still no Dr. Ivan, 8:25 PM. Pain level around 6.5 or 7, bearable but very uncomfortable. Nurse Alice did what she can with injections to the thigh.
Doctor replied saying no more epidural catheter anesthesia due to risk of infection. All this time I thought we were removing the urinary catheter, so it hit me that I'd be going to sleep without local anesthesia. He instructed Alice with alternative pain killers. It's 9:06 PM.
About 9:20 PM, Alice came to remove my epidural catheter from my back. Also gave me a shot of pain killer in the thigh once more.
Pain is still the same, called Alice again at 10:55 PM. Got another shot. Pain is about 7.
Stuck it out, no painkiller for the rest of the night. Alice asked next morning how I slept, I said terribly. She asked why I didn't call her, I just didn't think it'd help.
Day 4: Post-Op X-rays
Morning came, mom visited but I was not in the best mood. We talked a bit, she helped me eat, and brush my teeth. She prayed for me and went to the airport. Tried to sleep.
Around 11:45 AM, nurses came with a stretcher. Dr Roslin was there, explained to me it's time for x-rays. Got my urinary catheter removed; I audibly said "ohh!", it felt strange but not painful at all. Put my arms around Dr. Roslin's neck, nurses grabbed my legs, and transferred me onto the stretcher.
Went all the way to the x-ray room on a different floor. Every bump hurt a little. On the x-ray platform, it was pretty tough getting into the right angles; upper body strength was required for femur shot. After a lot of pain, I'm back in my room at 12:20 PM. They give me a shot in the thigh. Now I don't have a urinary catheter anymore, I have a urine bottle. Pain level is about 5 or 6 right now.
Met new next-door neighbor, an English speaker. He's scheduled for surgery tomorrow, classic Ilizarov on his tibias. Talked a great deal about our issues and decisions that lead up to where we are. Great guy in his mid 20s. Gave him an idea of what to expect for the next few days.
Used urine bottle for first time at 4:50 PM. No problem! Just positioned it between my legs, noodle it in, and go. Keep baby wipes around for good measure, call the nurse when you're done.
(https://i.imgur.com/fO53ZMZl.jpg)
Dr. Kulesh came to visit around 6:20 PM to show me my first post operative x-rays. He said they looked good, no problems. I only looked at them briefly, but I have Z-cut osteotomy for my tibias and a straight osteotomy for the femurs; will need to double check.
He gave me some pain killer tablets (10), no more than 3 per day. It's Nurofen (http://www.nurofen.co.uk/our-products/core/nurofen-200mg-tablets/), basically ibuprofen, so I'll try not to take these as it may delay bone regeneration. Pain level as I write this at 10:03 PM is at 1-2, but I've had some shots and IV earlier this evening.
(https://i.imgur.com/sggiGPal.jpg)
Got the same nurse as I did on first day, Dr. Kulesh said that she is the best and I believe him; she's great!
I asked when I'd be able to walk assisted, he said there's no way to tell since every one is different. I'll see a physical trainer tomorrow at 5-6pm and we'll see from there.
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I know it's an early stage but in your opinion what amount of money do you recommened to save for whole process (food/accommodation/extras etc.)?
I'd have at least $40k if you intend to follow the doctor's recommendations, which I plan to do (namely regular rebandages and physiotherapy sessions). I went with the cheaper clinic and plan to go with the Russian (i.e. cheapest) nails, but I plan to play it very conservatively for recovery.
Don't you think that it will be quite difficult to do dailly staffs with one broken femur and tibia alone there?
I do think it will be difficult, yes. I plan to have a cleaning person once a week or so, and there are grocery stores that deliver (https://www.okeydostavka.ru/spb). Luckily there's a restaurant that has free delivery until 11 PM daily at my apartment as well, so that'll come in handy.
Dr. Kulesh also mentioned that physiotherapists can visit you instead of going to the clinic, so that's a nice option too.
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Thanks for the detailed updates Android they're great and I hope you continue them in a similar fashion throughout your process.
So damn. You're getting injected many times per day between pain killers, IV, etc? You've probably been pricked quite a bit since you've arrived there lol with the blood tests and epidural as well. I hate needles myself but don't avoid them when I need them.
So do you recall anything from the operating table? How was it? You pretty much saw Solomin and Kulesh walk in and then you were out and woke up? Was it like people say, you felt like you were falling asleep and that no time passed and you woke up right away?
So is external femur as painful as you would have thought it would be so far? I know we discussed before how we think it's a bit barbaric but is it better or worse than you had thought?
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Happy to hear from you!
A few things. You actually don't feel the urge to pee because of the catheter, because the bladder is being emptied constantly before you can even develop that urge. At least that's my experience with surgeries. Or do you mean you couldn't feel your lower areas at all?
Also when you said "I'm always hot" the nurse might have thought you want to flirt with her ;D
Good night ! Hopefully you'll be able to sleep. I can relate to the back pain. It was the worst when I had to lay on my back for a longer time.
This product - I only know the German version - : ( https://www.amazon.de/ENSBONA-Teufelssalbe-hei%C3%9F-200-Salbe/dp/B00Q98VFVA )
helped me. In the beginning it is really hot and you feel like burning but that goes away soon and you don't feel your backpain anymore. After that I was able to sleep. But never mix it with other gels, always clean your back before trying something else as you could be allergic to the chemical reactions. And wash your hands afterwards! Maybe someone else can help you, too...
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So glad to see you doing this well to be posting all that. I know it must still be super rough right now, but you're still doing well enough to write and hit that "post" button, and that's what matters to me.
Super glad Solomin & Kulesh elevate the legs of their patients! I wasn't sure if they would, and I was really worried about that after the tragic case with the Korean man.
They also already prescribed you anticoagulants and painkillers... I'm so relieved now. Of course, thanks for such detailed posts and the pictures, too. Love the mini-Android!
And hey, your hands look much bigger than mine from the pics! So weird how the body can vary drastically like that (like my shoes' size not matching my height at all). Your legs are also quite hairy. You won't have to worry much about the scars!
Still wishing you all the best!! Onward and upward!
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Thanks for the detailed updates Android they're great and I hope you continue them in a similar fashion throughout your process.
So damn. You're getting injected many times per day between pain killers, IV, etc? You've probably been pricked quite a bit since you've arrived there lol with the blood tests and epidural as well. I hate needles myself but don't avoid them when I need them.
So do you recall anything from the operating table? How was it? You pretty much saw Solomin and Kulesh walk in and then you were out and woke up? Was it like people say, you felt like you were falling asleep and that no time passed and you woke up right away?
So is external femur as painful as you would have thought it would be so far? I know we discussed before how we think it's a bit barbaric but is it better or worse than you had thought?
I've had general anesthesia before, and, indeed, for me it was: I just went unconscious in a matter of about 10 seconds, then I was instantly up "moments" later with everything finished. The actual procedure actually took at least half an hour.
Your mind will have trouble comprehending time had even passed. To this day, I still know on a logical and scientific level everything that happened, but it just doesn't feel like anything transpired; it felt like I was turned off, then on again.
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Also, Android, I can help with transliterating the name of any meds you're taking from Cyrillic, should you need any of that at any point! Seems like you've got it all handled, however!
EDIT:
Got my urinary catheter removed; I audibly said "ohh!", it felt strange but not painful at all.
That's one annoying inconvenience off my list. ;D
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That femur frame looks grim. Hopefully you will be able to sit on a toilet somehow. Anyway try to stay positive and maybe watch the office US. It saved my life during lengthening.
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Hello Android i wish to see you too - i send you a PM.
my situation is different than you even my body but i had some tough days. for me i walked 4 days after the surgery - i guess that i may able to do it earlier but i was in a great pain - swollen legs - and right knee sharp pain ( reduced now but still exists ). and also Dr Kulesh doesn't encourage to walk a lot - just train train train as much as you - i wish that you will be able to walk as soon as possible laying down in bed is such a terrible idea.
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Dr Ivan came to me the day of your operation and told me that there is a guy who has frames in his tibia and femur he is American, I didn't take time to figure out that it was you. any way i wish you and me good luck and please don't ever forgot to do any registration of your visa you will be fined and i don't know what is else in the Russian law.
I hope to see you soon
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Hey Android, thank you again for such a detailed diary.
Your femur frame looks more bulky compared to the ones that Pope have . Have u noticee that? Once Dr kulesh told me that it is possible to use more compact femur frames instead of monorail. Maybe you didn't ask him to use something compact before surgery
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Hi Android. Thanks for very detaile dairy. From what I read so far, I think these two doctors are the bests in russia. I am saving money for surgery and consider them for my first option. We will appreciate if you inform us, at what centimiter you need ATL surgery on your tibia. Prof Catagney belives after 4 cm, 90% of the patients need it. I will follow your dairy carefully.
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Great job Android, obviously the cross leg thing will look a lil confusing to those who don't know much. How will it help you gain more length though?
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Hey Android, loving the diary, you really know how to paint a picture. How is it compared to what you imagined? better? worse? or is it pretty much how you imagined it was going to be like?
Stay strong and God speed brother. I’ll be sending good vibes your way.
Oh and happy 4th of July!
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Yes, that's right. I'm in Russia.
About Me
I learned about cosmetic limb lengthening maybe a decade ago, most likely late at night, seeing what the internet can tell me about height increase. I found the old forum, and during those days it seemed as if every other patient was going to Beijing, as it was the affordable option at the time. I read into the surgery a bit back then, but not too much in depth since I was a busy student with a girlfriend. My mind was occupied and I didn't feel the need for the surgery, so I forgot about it for many years.
Fast forward to around 2017, and I was looking into increasing my height again. After a couple long (and one short) relationships, I was single. I've been at the same job for a few years, and while it paid well for the amount of work I had to do (there were weeks that I'd just surf the web), I didn't feel that I was growing professionally. I began to spend a lot of time on this forum, learning and planning.
I told my mom about it pretty early on. She was at first hesitant, but later agreed that this would be good for me. She's quite short herself at around 159 cm (4'11"), and confided in me that she too wanted to be taller--like her mom--when she was younger.
While planning, a couple things happened. First, I met a girl. She's beautiful, intelligent, ambitious, and thoughtful. Then I got approached for a job that would pay considerably more. I decided that if one of those two things worked out, I'd postpone the surgery. Obviously they didn't pan out, but I'm still in touch with the girl, so we'll see what happens after my journey.
Why Doctors Solomin and Kulesh?
Let's get the obvious one out of the way: the price. The dollar is quite strong compared to the ruble right now, so it's an advantageous time to look across the pond. I'm not particularly wealthy, nor do I want to take on debt, so doctors overseas looked particularly attractive.
My shortlist for a time was Dr. Solomin/Dr. Kulesh, Dr. Parihar, Dr. Birkholtz, Dr. Giotikas, and Dr. Mahboubian. I didn't contact all of them, but their combination of experience, reputation, location, and price were what made them attractive to me. After exchanging emails, the expertise and punctuality had the most impact.
With a starting height of around 163 cm, I wanted to lengthen both tibias and femurs. Only a few offered cross-lengthening (good primer on the method here (https://legslengthen.com/services/cross-lateral/)), and Dr. Solomin's reputation both on the forum (specifically Overdozer (http://www.limblengtheningforum.com/index.php?topic=1671.0), badwolf (http://www.limblengtheningforum.com/index.php?topic=2672.0), and later Jim_dabarber (http://www.limblengtheningforum.com/index.php?topic=5016.0)) and among his peers sealed the deal for me. He co-created the Ortho-SUV hexapod (http://ortho-suv.org/) (the "S" is for Solomin), wrote the book on external fixation, and the forward was written by Dr. Paley (https://i.imgur.com/B05ltz7.png). That was enough validation for me.
Contacting the Doctors
I emailed both Dr. Kulesh and Dr. Solomin for the first time in January 2018, with the same emails in the doctor information threads. For the most part you will be talking to Dr. Kulesh; in fact, I've yet to receive an email from Dr. Solomin, aside from the occasional out-of-office reply.
My impression is that Dr. Kulesh is punctual, to the point, and helpful. He seems to work late often, so I was surprised when he'd email me past his midnight.
After a couple dozen emails, Dr. Kulesh and I decided when the surgery would take place: late June. He asked me to remind him a month before I arrive and to ask any questions that I may have before then.
Sharing My Journey
I've told several people in real life about my journey. I've told my mom and around six friends. My mom has shared it with her closest friends as well, including her church pastor (who is surprisingly very positive about this idea).
I told my friends after my plans were in place, so it was matter of fact. I wasn't looking for direction, just telling them that my real reason for moving was for my surgery.
So far the reactions are at first surprise, curiosity, then support. No one has said that it's crazy (at least not to my face!), and they're looking forward to seeing the new me.
There are some people that I'm really close to that I haven't told yet, because I can't imagine their reaction being that great. It's harder for me to share with men, especially if they're about my height. I don't want to seem like a "traitor," as silly as that sounds. I haven't told my dad yet either, since he's a tough guy that managed to combat height neurosis with a strong--and sometimes abrasive--personality.
It won't be a secret for long, so I'll cross that bridge when I get to it!
Preparing to Move
I decided to stay in St. Petersburg for the entire duration of the lengthening phase to maximize the success rate. So I had to quit my job, sell all my things, and completely change my life. It was tough, but it wasn't too bad in hindsight.
As for the job, I told them half truths. I said that my mom's living alone in Japan, and I'm an only child, so I wanted to help her out in a time of need. All of that is true, except that she doesn't quite need my help so badly; she just wants me to help her create side gigs down the line. I liked my coworkers and didn't want to burn bridges, so this worked out fine.
The logistics of completely selling my accumulation of stuff was pretty stressful. I didn't start selling things until a couple months before the move, so it's really my fault. I used Facebook Marketplace (had the most success here), eBay (best for big-ticket items), letgo, and Craigslist (large furniture) for all my sales.
I was planning to sell my car, but my dad offered to fly to me and drive it back home. He's several states away, but likes to drive so it wasn't a big deal for him. It also allowed me to pack some things I wanted to keep for my eventual return.
Payment
This was a huge headache, as both Pope (http://www.limblengtheningforum.com/index.php?topic=8963.msg91027#msg91027) and shortygirl (http://www.limblengtheningforum.com/index.php?topic=8969.msg91236#msg91236) already mentioned. I was naive and arrived without a ruble to my name, since I could use the ATM for small purchases and pay the doctors with PayPal, an accepted payment method according to their files.
But! PayPal has recently become more strict, and payments to Russian accounts are unreliable. My payment to Dr. Kulesh was blocked almost immediately, and he also got the failure message. I then tried to wire the money, but it takes several business days, so it's not ideal if your surgery date is soon after arrival.
So next I tried Western Union. I tried to send it directly to Dr. Kulesh, but I didn't have all the details (his address), so I had the bright idea of sending it to myself. Unfortunately that was blocked as well.
So then, ATMs! I found a few down the street, was able to withdraw 9000 rubles a few times. Then I got an error, so I hit another ATM. Got a few thousand more, then another error. Called my debit card company (Chase), and they informed me that I hit my daily $500 withdrawal limit. They allowed me to temporarily increase my daily limit to $1000 for a week, so I got some more rubles after the call. Be sure to only use a debit card, as you'll get a hefty charge for cash advances with a credit card.
However! I didn't have enough days to gather the required funds. So I tried Western Union again, this time for $2000 worth of rubles via debit card... And it worked! I walked to three banks listed on the Western Union site, and the doors even had the Western Union logo on it, but they turned me away. Found a place right across from MEDEM (the private clinic) called Alfa-Bank, and was able to transfer rubles on the same day. It's inside this mall on the first floor (https://goo.gl/maps/A1zsb5P2cSq), go inside past the escalators and it'll be on the right side (not the one right by the entrance!). Here's a business card:
(https://i.imgur.com/DcNz60gl.jpg)
This was a stressful few days. If the rates and fees are reasonable, I suggest transferring your home currency to rubles before you take off for Russia.
As for paying the doctors, I finally did this yesterday after all the consultations and tests. I hadn't paid a ruble before that. So far I've given only the advance payment of 240,500 rubles for step one of the surgery (i.e. putting the frames on).
Prepping for Russia
As much as you think you're ready, you won't be.
For the visa I got it processed at a local Russian visa agency, Rush In Documentation Center (https://www.yelp.com/biz/rush-in-documentation-center-west-hollywood). It was quite easy, and it felt more secure than sending the passport myself. It cost about $500 for a 3 year multi-entry visa (https://waytorussia.net/RussianVisa/3-Year-Russian-Visa-US-Citizens.html), which is only applicable for citizens of the United States.
Be sure to have the right power plug adapter for your devices. I bought myself a compatible adapter (http://a.co/cAun9Rw), but it's pretty awful since the shape is all wrong for Russia; it's a square peg trying to fit into a smaller circular outlet, so the adapter keeps falling out. I'll need to buy better ones online, like this one (https://www.aliexpress.com/item/New-Arrival-2016-Best-Price-Universal-UK-US-AU-to-EU-White-European-Charger-Power-Socket/32770043802.html).
I asked my mom to get me a power strip (with USB ports if they have it), and she came through beautifully: no more adapters popping out with any small movement! I plugged my power strip from te US into it and it admittedly looks a bit crazy now, but it works. Quick note, I can buy things for myself, but asked mom since I'm in a hospital room now (more on that way below).
(https://i.imgur.com/awBnJdZl.jpg)
I brought my Nintendo 3DS, but the charger doesn't work even with a plug adapter! I found a couple stores selling the handhelds but not the charger, so I'll have to get it online (I recommend AliExpress). I recommend getting the USB charger cable if you have one, I unfortunately donated it during the move.
Only clothing I brought were shirts (around 10), underwear (5), socks (4), shorts (3), pants (1), and jackets (2). Brought one pair each of sneakers and sandals as well. Toiletries like toothbrushes and shavers are a given, but be sure you bring your favorites like toothpaste and deodorant since you might not be able to find one that you like. I had this problem, but luckily you can find Old Spice here.
I also bought some awesome pajamas from Uniqlo called Ultra Stretch (https://www.uniqlo.com/us/en/men/loungewear/lounge-sets). They're extremely stretchy, so they should be able to accommodate frames. I'll probably need to cut the cuffs, we'll see soon enough.
Supplements
I was concerned about nutrition, so I stocked up on protein powder. First, I've been consuming Schmilk (http://superbodyfuel.com/shop/schmilk/) (I like chocolate flavor) for a couple years now, which is a nutritionally complete meal in powder form; just add milk. I won't be completely replacing meals, but it'll be a good supplement.
Losing weight due to muscle atrophy is common, so I bought weight gainer protein powder as well: Optimum Nutrition's Serious Mass (https://www.optimumnutrition.com/en-us/product/serious-mass). We'll see how well this works, I really liked Gold Standard whey while I was hitting the gym.
I bought some supplements for bone growth as well, Vitamin Code's Grow Bone System (https://www.gardenoflife.com/content/product/vitamin-code-grow-bone-system/). It has the nutrients that I was looking for, namely vitamins D, K, magnesium, and silica. I'm hoping that this helps in the long run.
Flight to Russia
Pretty normal stuff, flew via Aeroflot. Food wasn't too bad. In-flight entertainment was extremely slow, I audibly and visibly saw a woman getting frustrated with it. Airport bathrooms were filthy!
Worthy of mention, wear a hygienic mask if you can. They're cheap, and Dr. Solomin & Dr. Kulesh won't operate on patients with influenza!
St. Petersburg, Russia
This is a beautiful city, especially this time of year. June through July is what they call White Nights, in which the sky remains bright even throughout the night. Here's the city at 1 AM:
(https://i.imgur.com/wp4aemql.jpg)
I picked a relatively expensive time to be here, since it's also during the FIFA World Cup. Silver lining is that the city is very lively now, and it probably helped restaurants prepare English menus. Not too common, but they're around!
Speaking of costs, this is a much less expensive city compared to Los Angeles... Even in the city! Draft beer can cost around $6-8 in LA, but it's under $3 here in SPb. I was worried that I'd dislike the food, but everything has been delicious (and affordable) so far.
ATMs are everywhere, so you won't be stranded for cash as long as you have a Visa or Mastercard debit card. Many restaurants take card, and they even bring their card reader machine to the table.
Tipping is sometimes included, so be sure to read the receipt first. Tipping isn't necessary, but it's becoming more common, so I leave 10% in cash (you can't tip via card). So be sure to get some smaller bills when you can.
Accommodation: Pre-operative
My mom came with me, and will be with me a few days after surgery, so we had to get a place that we could share. Hotels are expensive right now, so I only stayed at one for a couple nights, since we landed past midnight; a bit difficult to find a 24-hour Airbnb.
Another merit to staying at a hotel is that they'll register your visa without breaking a sweat. Registration of a visa is strange: basically you have to register with your host within your first week of being in Russia, there's no cost to you. Be sure to do this, as failure to do so will mean fines and/or (though rare) deportation.
After that we relocated to a rental I found on Airbnb. It cost just over $1000 for two weeks, and it's in the heart of the city. It's also in walking distance to MEDEM, which made it convenient. This apartment was obviously newly created for short-stay users, since there were a few similar units next door inside a comparatively old building.
(https://i.imgur.com/s24QAb5l.jpg)
(https://i.imgur.com/p6iI6lTl.jpg)
Getting Around
At first I thought I'd be using Uber, but it turns out that the local market is more saturated with Gett. I had no idea what it was, but I saw ads in the airport and decided to give it a try.
If you've used Uber, it's pretty much the same deal. Gett is cheaper though, so I recommend using it if in Russia.
X-rays and Tests
The day after I landed, I went to RNIITO to get x-rays by Dr. Nikita, who works with Dr. Kulesh. This was about 35 minutes away (15 km or 9.3 miles) from where I was staying; this cost around 718 rubles ($11.40). I initially had some trouble on seeing him since the hospital staff didn't speak much English. After using Google Translate, showing emails, and of course name dropping, they managed to find Dr. Nikita for me.
(https://i.imgur.com/qdWWvqsl.jpg)
Dr. Nikita spoke some English, so I had an easier time communicating with him. He walked me through corridors to get to the x-ray room, and I was asked to take my pants off. We took some long film x-rays while standing, and then I laid down for some tibial x-rays. Dr. Nikita said he'd email the results to Dr. Kulesh, then he walked me out. I think I was there for 30 minutes or so total.
(https://i.imgur.com/YXfcw63l.jpg)
(https://i.imgur.com/huj6ez7l.jpg)
Since I have a birth defect of the heart, I was recommended to see a cardiologist. Dr. Kulesh scheduled an appointment for me at MEDEM, so I headed back to the city. After some paperwork and waiting for a few minutes, I got a cardiogram and got the results right away. This cost me just under $25.
(https://i.imgur.com/IH1IsuBl.jpg)
Consultation: Dr. Kulesh
The very same evening I went to see Dr. Kulesh at St. George's Hospital. Very nice building, much newer than RNIITO. After some more Google Translate, I was able to find Dr. Kulesh's office, but there was another person waiting outside his door. There was already another patient inside his office as well, so I waited about an hour or more before being seen. Luckily they had Wi-Fi, so I was able to kill time pretty easily.
(https://i.imgur.com/ns79Kvdl.jpg)
(https://i.imgur.com/O9lrjI1l.jpg)
At last, meeting the man himself, Dr. Kulesh! We talked about my goals, method, timeline estimates, and recommendations. He showed me a handful of patient x-rays and photos to give me a better idea of what's to come, and the first patient was Jim_dabarber! He said that Jim is a good patient, and that he's doing very well with physiotherapy.
The doctor also shared stories of non-compliant patients, like a person who flew home one day post-op (!) and decided to lengthen 3 mm a day (!) because he was in a hurry. In the end the doctors were able to help him to recovery, but it was a tough one. Another patient lengthened 13 cm on his femurs and 7 cm on his tibias. Again, very tough recovery, and having joint problems.
He explained that they can only offer recommendations and guidelines, but if a patient is insistent, they will do it. But please, use some common sense. Those two guys mentioned above are not shining examples of good outcomes.
He also had a funny anecdote about patients wanting absolute perfection. One patient would scrutinize his x-rays, saying that one leg was 1-2 mm longer than the other. After correction, the nails were inserted since the method chosen was LATN; the meticulous correction wasn't fruitful, since jamming intramedullary nails will shift your bones a little bit. In the end there was minor discrepancy, but the mechanical axis was good, and the patient was happy with their result.
Another patient had curvature problems with their femur, which was not detectable from the outside. During lengthening the patient became concerned, Photoshopping the x-rays to straighten the femur, to say that is the result they wanted. Local doctors were also concerned, saying it should be fixed. However, the mechanical axis of the bones were good, so it was a non-issue. And again, it was undetectable from outside the body.
As for me, I currently have near-perfect mechanical axis, very slight valgus deformity (3-4 mm) at the knees. Right femur is around 47 cm, left within 4 mm of that. Right tibia is 36 cm, left is within 2 mm of that. I've tried to measure my own legs before and I was waaaay off, so keep that in mind.
We talked about methods a bit. He does not recommend LON at all, because of the higher infection rate. He had one patient with deep infection, and said "one is enough." Therefore he prefers LATN, but his utmost recommendation was conventional Ilizarov without intramedullary nails. Yes, the patient will have to wear the frames for a while longer, but it has the best outcomes. Unfortunately it's not a reality for many, especially for those who travel abroad on limited visas, so use your best judgement.
He prefaced this by saying that it's only his opinion, and that the final judgement comes down to the professor (Dr. Solomin), but that he does not think that weight-bearing during lengthening is beneficial. He was also inconclusive about the S (or Z) cut osteotomy, saying that there's more research required.
We started talking about potential surgery dates and location. At first I thought my only choice was MEDEM since it can take 1-3 weeks to get an appointment at the municipal clinic, St. Elizabeth's Hospital. However Dr. Kulesh said it's possible and that he'd get back to me on it after he talks to the professor. We made loose plans on when I'd get to meet Dr. Solomin.
Which Clinic?
The very next day Dr. Kulesh let me know that they can book a room on Friday, June 29. I was mentally prepared for MEDEM, with its fancy architecture, hotel-like rooms, appetizing food, and English-speaking staff... But I originally asked for the municipal clinic, so I agreed.
Until then, I rounded up the advance payment, got an x-ray of my femurs, and met Dr. Solomin back at RNIITO. Dr. Kulesh was there as well.
Consultation: Dr. Solomin & Dr. Kulesh
Again with the help of Google Translate and patient staff, I was able to find Dr. Solomin's office at RNIITO. This time my mom came along.
While waiting, Dr. Kulesh arrived. A few minutes later, I saw Dr. Solomin briskly walking down the hallway. He was very energetic, and offered us coffee or tea, which he made for us. He started off by apologizing, that he has a lecture that morning, so that he'll have to leave in a few minutes.
He mentioned that while he was quiet, he has been reading my emails. Dr. Kulesh pulled up x-rays, checked my mechanical axis/lengths/diameters, and said it looked fine for LATN.
He then disappeared for a while for his lecture, which was about fractures of the femur for about 16 other doctors.
When he came back, we talked about my goals. I said that my wish is 7 cm femurs, 6 cm tibias. He said his recommendation is 10% of the starting bone length, and I told him yes, that was just my wish. He added that after we start lengthening, we can see how my body responds. If the femurs can get to 7 cm, then to 8 cm, that's fine by him. Dr. Kulesh added that a patient once came in for lengthening, and a day after surgery changed their mind, saying that they just want the bone back in one piece; you really don't know how you'll react to such trauma.
As for when we could start the next set of legs in the cross-lengthening journey, Dr. Kulesh recommended a year apart. Dr. Solomin said as soon as the bones look consolidated via x-rays. Dr. Kulesh admitted that only one patient has ever taken his advice, adding that they had a great recovery.
I asked how many patients he has worked on. "Thousands. Perhaps finally, you will be my first successful patient!" Really, he was a charming guy. He talks very fast, and when he was lecturing, I told Dr. Kulesh that she had a hard time understanding since he has an accent too. To which he replied, "yes, he can be hard to understand, he talks just as fast in Russian!"
My mom asked if they sell or recommend special underwear for patients like me, to which they said "our patients usually just figure it out." So yeah, think ahead about this one!
They let me know that I'll be checked into the hospital on Thursday morning, then surgery on Friday. It's Thursday evening as I write this.
After the consultation, Dr. Kulesh walked us to St. Elizabeth's Hospital since it's close by. Beautiful day, perfect weather. Once inside and up a few flights, Dr. Kulesh left us with Dr. Roslan (not sure about spelling), saying that he'll help me get some tests done while I'm there. Did a blood test, urine test, and cardiogram once more. We were done in under an hour.
(https://i.imgur.com/boY7zrzl.jpg)
Accommodation: Lengthening
Found a place a little north of the clinic which was affordable, just under $1500 for 91 days. Scoped the place out recently, there was a good restaurant downstairs that has free delivery until 11 PM. Score!
More about this place once I move in.
Preparing for Surgery
I was asked yesterday that I needed to shave my own legs, either the night before or on the morning of surgery. I have a lot of hair, so I decided to get a head start yesterday night.
Used my beard trimmer to chop away most of it, then used some shaving cream and a Venus razor to take care of the rest.
I haven't seen my nked legs in decades, it's a strange sight. It also feels very strange too. I'll admit that I've got some pretty legs!
(https://i.imgur.com/VvL5r1sl.jpg)
Moving into St. Elizabeth's Hospital
Got up early today and used Gett once more. I was asked by Dr. Kulesh to go to the emergency department and then call Dr. Roslan; it was a confusing few minutes for the staff since I came with two suitcases, a mother, and without an injury in sight. After a few minutes we saw Dr. Roslan, and we proceeded to my room.
(https://i.imgur.com/zwAxPVRl.jpg)
(https://i.imgur.com/pfJ25IGl.jpg)
(https://i.imgur.com/ab5vebUl.jpg)
I'll be staying here for two weeks, leaving around July 14th or so to the apartment I mentioned. So far I've had three meals, and while bland looking, I actually enjoyed them. I'm used to eating rice porridge, called okayu, which they served twice today. They gave me some cheese for dinner, which was pretty exciting. Thankfully I'm a small eater so I actually got full eating this, but I also get hungry really fast so I'm hungry again after only two hours. Mom left me snacks, but I'll be a good boy and abstain since you don't want a full stomach before surgery.
The rooms are more than adequate. Door from hallway leads to a common room, with a kitchen and separate doors to the bathroom and shower. Then there are two connected rooms, one of which I'm typing this from. The beds aren't very soft, but I've fared worse. I brought a memory foam travel pillow, and it has served me well so far when I want to sit and type with my back against the wall.
There's an older guy in the other room, no apparent injury, but is on IV sometimes. His meals are different from mine as well.
Just took a shower, it's pretty cramped and outdated. The handle on the side of the wall is practically coming off the wall, so I won't be able to depend on that. The shower head holder is made of plastic and is also coming off the wall, so I've really got to be careful. Actually, maybe they'll replace it if I break it...
Closing Thoughts
That's it for part one, while I'm still my old self. It's almost 11 PM and I'm getting pretty sleepy. Surgery after 9 AM tomorrow morning (June 29, Friday), still not sure when exactly really. Still pretty bright out, looks like dusk back at home.
Onward and upward!
At last, was waiting for you my man Android to start it, was keen to see whom you choose, all the best mate - you are an awesome dude and I know you will do great. Keep us posted please and keep being as helpful as you always have been.
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Sorry I haven't updated or replied to new questions, my laptop has refusing to connect to my phone as a hotspot. I'll either fix it soon or wait for WiFi, which is a little over a week away.
I started lengthening today, officially in the distraction phase! Here's a short video:
https://www.instagram.com/p/Bk5iGTvHTiF/?utm_source=ig_share_sheet&igshid=94zcj7tn45hy
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"Actually, maybe they'll replace it if I break it..."
- haha, that's what I call a smart guy, break it dude - for convenience of future LLers and yourself
"Epidural catheter in my back"
- I thought they put one in your johnson as well,right? that's for pissing right? what is this 'back' catheter for? by 'back' do you mean the hole where the sun does not shine?
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Hooray, phone's hotspot works again! Let's answer some questions.
So do you recall anything from the operating table? How was it? You pretty much saw Solomin and Kulesh walk in and then you were out and woke up? Was it like people say, you felt like you were falling asleep and that no time passed and you woke up right away?
So is external femur as painful as you would have thought it would be so far? I know we discussed before how we think it's a bit barbaric but is it better or worse than you had thought?
I honestly don't remember anything other than the stuff I wrote: epidural catheter in back, nasal cannula, and I was out not much long after that. I briefly remember someone with a bolt cutter shortening the pins in my frames, but can't remember if that was in operating room (must have been). But that's it, so far the easiest part of the journey hands down: instant and painless.
External femur isn't that painful, just has its own challenges like much more restricted range of motion. I can bend my tibia frame leg 90 degrees, but it's like 15 degrees on my femoral frame leg. Granted I need more PT, but that's how it starts. I've had more pain in my tibial frame leg actually. Even now the femur is painless while tibia is about a 2-3.
You actually don't feel the urge to pee because of the catheter, because the bladder is being emptied constantly before you can even develop that urge. At least that's my experience with surgeries. Or do you mean you couldn't feel your lower areas at all?
This product - I only know the German version - : ( https://www.amazon.de/ENSBONA-Teufelssalbe-hei%C3%9F-200-Salbe/dp/B00Q98VFVA (https://www.amazon.de/ENSBONA-Teufelssalbe-hei%C3%9F-200-Salbe/dp/B00Q98VFVA) ) helped me.
Ah, makes sense. Add to that, yes, my lower half of the body was a little numb too, so I wasn't sure.
Thanks for the suggestion! Back's better now, but you never know when it'll strike again... And then there's always round two.
They also already prescribed you anticoagulants and painkillers... I'm so relieved now. Of course, thanks for such detailed posts and the pictures, too. Love the mini-Android!
And hey, your hands look much bigger than mine from the pics! So weird how the body can vary drastically like that (like my shoes' size not matching my height at all). Your legs are also quite hairy. You won't have to worry much about the scars!
Yeah, just today I started taking Pradaxa (another drug to prevent blood clots) to replace the shots I was getting on my belly. I'll be taking these for months! Yeah, glad I found this mini-Android while packing to go to Russia. Unfortunately one of the antennae broke, hopefully I'll find it in the suitcase one of these days...
My hands are small, I assure you! Dr. Kulesh poked fun at nurse Alice, saying she has chicken fingers. Then later when she administered my hand plug IV, she laughed and said I have chicken fingers too. Not offended, enjoyed the moment.
And yeah, I got plenty of body hair to spare. Let's see how it plays out!
That femur frame looks grim. Hopefully you will be able to sit on a toilet somehow. Anyway try to stay positive and maybe watch the office US. It saved my life during lengthening.
So far it has been really comfortable, I can sleep fine with it. My butt cheek completely touches the bed, so there's no frame around back. Haven't sat on a toilet yet, but I think the bigger issue will be knee ROM.
I'll definitely keep The Office in mind, I've started and stopped it because I was busy at the time. This is my chance!
Hey Android, thank you again for such a detailed diary.
Your femur frame looks more bulky compared to the ones that Pope have . Have u noticee that? Once Dr kulesh told me that it is possible to use more compact femur frames instead of monorail. Maybe you didn't ask him to use something compact before surgery
Nope, didn't ask at all for smaller frames, didn't even think to ask. His definitely must be more comfortable, but maybe it doesn't weight bear as much since he expects him to stay in bed more often... Who knows. Honestly I don't mind the ones I have now that I have them.
Great job Android, obviously the cross leg thing will look a lil confusing to those who don't know much. How will it help you gain more length though?
Simple, both femurs and tibias are being lengthened! This method is a compromise as external femurs are not as well tolerated by patients due to discomfort. For those that can afford it, internal femurs are the way to go, then do the tibias either way.
How is it compared to what you imagined? better? worse? or is it pretty much how you imagined it was going to be like?
I wasn't prepared for how long I'd be stuck in bed, that's for sure! Bed sores, itching, neck pain, and the like were unexpected. But really, it's not that bad. Surgery was quick, hospital staff are friendly, I've eaten every bite of the food, and the doctors are friendly. The pain can really suck sometimes, but it's managed in around 30 min by readjusting.
"Epidural catheter in my back"
- I thought they put one in your johnson as well,right? that's for pissing right? what is this 'back' catheter for? by 'back' do you mean the hole where the sun does not shine?
Epidural catheter is to administer local anesthesia which goes along my spinal cord, urinary catheter is for the urine bag and goes right into the urethra.
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Day 4: Continued
After the last post I tried to sleep. My IV plug hand felt a little sharp pain for a few minutes since I was typing so much! Took about an hour to write that update.
Because it took so long, the mild IV pain killer had started to wear off, so pain level was around 4. Manageable, but harder to fall asleep. My left foot with femur frame was practically resting directly on the metal rack, and it was really starting to hurt. I tried repositioning and stretching for a LONG time, gave up and called the nurse to place my memory foam travel pillow under my foot.
Instant relief! But I had and new pain from readjusting the leg, which wasn't too bad. Most of the pain I felt was the right tibial frame leg, specifically the top of the foot. The foot is dropping, classic ballerina foot in the works. For those unaware, this is due to a tightening Achilles tendon, making your foot point downward like a ballerina's feet.
I'm stretching every 30 min or so when awake, at first I could only move a few millimeters but I can extend it back to the neutral 90 degree angle and beyond now. Takes a little warming up to do it again after a break. It feels like muscle pain you feel when you stretch the day after a very hard workout. Somewhat feels like the veins on top of the foot are going to pop out. It's not pleasant, but it reminds me of muscle soreness from the gym, which is tolerable.
I couldn't sleep right away and my body was itching, so I decided to give myself a cleaning with baby wipes. Haven't been able to shower yet which drives me crazy since I usually shower at night; I prefer to sleep in a relatively clean bed every night. Buy baby wipes, and don't forget deodorant! You never know who you might meet along your journey.
Anyway, was finally able to sleep. Woke up an hour later at 1:27 AM, Dr. Kulesh had sent me some emails so I replied and went back to sleep. Woke up again later, back to sleep.
Day 5 (July 3): The Bedpan
Finally was able to sleep undisturbed, waking up after 8 AM. On a rare sunny day, the sun sears through the missing window blinds, making the room pretty hot at 9 AM. I learned how to say "open/close window" in Russian pretty fast.
10:48 AM, my suitemate just got wheeled away for his surgery. Good luck to him, he's in good hands!
10:50 AM, I called the nurse to say that I need to use the bedpan.
It's about 11:15 AM now, took maybe 10 min to use it. It was no big deal, though managing to fit the bedpan in front of my leg raisers was a challenge. Again, upper body strength came in handy. I was a bit constipated so it took a while, and it's really hard to get a good angle, but the deed was done. Luckily the person that helped was a sweet told lady that really got to be friendly with my mom and I, she's like a grandma figure. She has seen it all, not a hint of disgust in her eyes. I feel 1000% better.
Again, I can't stress this enough... Get baby wipes!! Bring some small plastic bags too, like from the produce section of the grocery store. Or, come to think of it, dog poop bags. I had a few with me, and I asked the staff for more and now I have an endless supply of trash bags. Really handy for the little bits of trash you'll accumulate, which I tie off after the bedpan wipes are in there. I place it next to the bedpan when I call them again, and they throw it away.
11:30 AM, doctors Solomin and Kulesh came to see me. First time seeing Dr. Solomin since our consultation, at least for me since I was unconscious during surgery. He asked why I didn't have my tibia frame foot in a 90 degree position via bandage, Dr. Kulesh responded it has only been like this for a day (he removed it during rebandage for my comfort). Dr. Solomin said that I should see the Canadian girl who didn't do any physiotherapy, I'm guessing because she has ballerina feet. I told them I'm ready to put them back on, that I've been stretching often, that I'm ready for physiotherapy! They smiled and rushed off to my suitemate's surgery.
Time for another IV. This time my hand hurt, so she removed the entry point and injected into my arm. Much less painful, just less convenient I guess. Feels good to have that thing out of my hand. It was fine most of the time, but it would hurt once in a while if I moved my hand in a certain way, like readjusting on the bed or scratching an itch. I don't mind needles so the arm works better for me anyway.
(https://i.imgur.com/GkSP9fOl.jpg)
Got in contact with AR on WhatsApp. Nice guy, glad to have someone to talk to that is a few days ahead of you, much like I was able to chat with my suitemate before his surgery. He has been able to walk much earlier than me, so hopefully I'll start soon too. My legs feel so heavy, but I'm sure they'll cooperate once I get some initial help.
Took a long nap, woke up to lunch. Lots to eat today, but the sweet tea made it easier to eat. My suitemate just came back at 3:05 PM. Congrats to him!
It's 5:38 PM, just finished physiotherapy with Irina. She spoke English well, no problems with communication. Lasted about 25 minutes, and it was brutal! Simple stretching and bending exercises of the feet, ankle, and knees. Sat for the first time today off the edge of bed with her assistance. I'll see her again in three days, wish it was sooner so I can get better faster.
Doctors Kulesh and Nikita came to visit at around 6 PM. Talked about my first PT session and that first day of lengthening will be determined by Dr. Solomin. We may do rebandages tomorrow.
Injected last IV for mild pain killer before 10 PM. Fell asleep ASAP, since the night before I stayed awake to post on the forum after injection. The painkiller doesn't last long, so it's best to fall asleep right after.
Day 6 (July 4): Pain
It's 2:12 AM, and my legs feel very heavy, pain level 3-4. Uncomfortable. A lot of neck pain.
Took Nurofen. Neck pain is almost gone, legs seem a little better, but not enough to fall asleep. It's 3:45 AM, been reading news and talking to friends on the other side of the world. Another benefit to sharing your journey with a select few that you trust. Listing to podcasts while playing a game, I'll take a nap later after my day time injection.
The pain feels like a heavy plate is pushing down on your legs. It's not sharp pain, but constant pain. It's not dull pain since it's a higher level than that; it feels like blunt force trauma, like getting hit with a bat or getting slowly squished between two cars. It won't make you cry, it's just nonstop pain that prevents you from getting good rest.
4:27 AM, pain is not as bad now. Might be able to sleep, but now I'm mentally awake!
5:08 AM, let's try this again.
5:30 AM, nope. Not gonna work, too awake and now I'm hungry. I'll do some stretches to prevent ballerina.
Finally fell sleep at around 7:11 AM, it's 9:12 AM now. Woken up for food, neck hurts again. After breakfast I had an IV of three different fluids. Went to sleep.
1:15 PM, Dr. Nikita is here for rebandages, my second one. It took an hour and went fairly well, a few pins and wires hurt (sharp but short-lived pain lasting up to 10 seconds), while some don't at all. Feels good to be disinfected!
https://www.instagram.com/p/BkzuhIUHtlc/?taken-by=android_cll
https://www.instagram.com/p/Bkzu2C9Hhkp/?taken-by=android_cll
First time I got a good look at the parts that I'll be lengthening. Looks simple enough.
Rest of day was peaceful, I managed to stretch my right foot to prevent ballerina as much as possible. Dr. Kulesh liked my solution of using my stretchy sweatpants to do it, but felt that it was unnecessary until distraction phase begins.
Barrage of shots and IV starting at 8:30 PM. Asked for bedpan, wiped myself down, brushed teeth, and going to sleep at 10:10 PM.
11:40 PM, woke up to pee. Right leg feels heavy again, painful. Not sure why.
5 AM. Same issue, stretching legs again to help me sleep. Pain level 6 or 7. Hour has passed, still stretching.
Eventually fell asleep again, woke up for breakfast. Right leg with tibia frame still hurts, pain level 5/10.
Day 7 (July 5): Lots of Sleep
Slept well during the day after another hot morning. Nothing really happened until Dr. Nikita came over around 4:40 PM to create a makeshift dorsiflexion boot for me, to prevent ballerina foot on my tibial frame leg. The stretch feels good!
(https://i.imgur.com/EzRMAiMl.jpg)
Ok, so it's 7 PM now, and the foot is really starting to hurt. It's like a sore pain, as if you've been walking all day with a bad shoe. I twitched my leg while sleeping and it was a jolt of sharp pain. This is going to suck, but additional surgery for Achilles tendon lengthening (ATL) will suck more, so I'll suck it up.
Call button for the nurse seems to be linked to the suite, not the individual room. Called nurse three times, each time they went to my suitemate. Had other people drop by help me instead. Fourth time, as she finished with the other guy and was about to leave, I called out for her. Very strange.
Woke up at 2:20 AM to really bad neck pain. Took Nurofen, still waiting for it to kick in.
Day 8 (July 6): First Lengthening
Slept through the night! Woke up around 8:30 AM. Shortly after breakfast at 9:45 AM, Dr. Kulesh and came over with a colleague, who measured my frames to make custom covers. Briefly saw Dr. Solomin, just to say things are fine.
4:10 PM Dr. Nikita and a new person came to rebandage, plus teaching me to lengthen for the first time!!!! Very simple, here's a short video.
https://www.instagram.com/p/Bk5iGTvHTiF/?taken-by=android_cll
Second PT session with Irina, invaluable for me. Right leg with frame dangled off the bed, what a milestone! Femur leg not so much, there's also the fact that I can't bend it 90 degrees anyway since my calf hits the frame before that.
Trying to sleep, but there's knee pain on tibia frame leg. Took a while to figure out, but it was because it was bent too much. Funny, since it bent so much more during PT; like it has reset. To be fair, I did lengthen them again; they're a different beast now. I straightened it, fell asleep. Got 7.5 hours!
Day 9 (July 7): Easy Day
Not much happened today, though there's some good news: cute nurse Alice is in, nice old ladies brought me cookies & peaches, and... Dr. Kulesh brought me a walker! Too bad I can't reach it, I doubt I can even use it right now.
(https://i.imgur.com/KwaAxqyl.jpg)
Had a lot of trouble getting comfortable to sleep again. Placed a cushion under my butt to minimize right leg's knee angle. After fixing that, I slept like a baby.
Day 10 (July 8 ): Walker
Irina came at around 2:40 PM for a surprise physiotherapy session. Did some of the usual stretches, then cracked open the walker!!
Practiced getting up from the bed and sitting back down, which was brutal. Did this twice, then my legs became stiff as a rock. Irina suggested we remove the leg raisers from the bed permanently, feels great.
(https://i.imgur.com/9dPPacpl.jpg)
Day 11 (July 9): Crazy Freaking Itching
2:40 AM, woken up by extremely tight legs. I can barely bend them and they're extremely itchy. Driving me absolutely crazy.
Took what felt like an hour to fall back asleep. It was misery to feel an itch that you can't scratch. I will order antihistamines ASAP.
Not much happened today, did finally look at my tibial frame leg to see why my sole is a little numb. Inflammation, gross! Wish they would poke a needle and drain this mess.
(https://i.imgur.com/DpXWAd8l.jpg)
Did some self-PT today, managed to dangle tibial frame leg off the side of the bed. Thought about it for my other leg, but knee wouldn't bend so I decided not to do it. Good thinking, because it was a pain getting back into my neutral bed position. I really don't want to fall off the bed with these things on!
No more belly shots, replaced with Pradaxa pills. Once per day, no big deal.
Time to sleep, starting to itch again...
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"Actually, maybe they'll replace it if I break it..."
- haha, that's what I call a smart guy, break it dude - for convenience of future LLers and yourself
"Epidural catheter in my back"
- I thought they put one in your johnson as well,right? that's for pissing right? what is this 'back' catheter for? by 'back' do you mean the hole where the sun does not shine?
Is it necessary to have epidural catheter, can't we have a general anaesthesia given?
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Happy to hear from you Android!
Is it possible for you to get sleeping pills since sleep is really important to recover...and if you just take it for the first 2-3 weeks I'm sure you won't get addicted to it. I took strong sleeping pills whenever I was in a hospital.
The itching, do you think it's an allergic reaction, since you mentioned antihistamines?
What helps against the inflammation of your foot?
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Hate hate hate feeling itchy on my feet especially the sole or the palm of my hand and neck pains. Praying for you Android.
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How much have you spoken to the docs about scar tissue inhibiting your ROM with external femur lengthening, of at all? If so. how do they respond to you as far as dealing with ex femur complications?
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Thanks Android. Do you care about too many scars on both tibia and femur with externals ? or do you believe that scar removing surgery can fade those to insignificance? did you discuss the scar topic with Kulesh and SOlomin? thanks a lot.
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Now this is the most interesting diary I've seen in a while. Cross-lengthening, relatively low-cost, and external femur. I too am planning on doing both segments, but I thought external femoral lengthening was hell on Earth that should be avoided at all cost.
Do you know your wingspan? What will you do if you manage all 13cm and see that your arms don't fall as low as you want them to go? Iamready did ~12cm if I recall and he ended up doing arm lengthening, though I don't know how low his wingspan was.
Best of luck, and hopefully you'll keep updating and not disappear like some others.
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Now this is the most interesting diary I've seen in a while. Cross-lengthening, relatively low-cost, and external femur. I too am planning on doing both segments, but I thought external femoral lengthening was hell on Earth that should be avoided at all cost.
Do you know your wingspan? What will you do if you manage all 13cm and see that your arms don't fall as low as you want them to go? Iamready did ~12cm if I recall and he ended up doing arm lengthening, though I don't know how low his wingspan was.
Best of luck, and hopefully you'll keep updating and not disappear like some others.
I agree with you that Android is undergoing a tough journey with external femur. Android is a good helpful guy and a long timer here , he won't disappear I am sure.
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Hey, man, hoping from here that your sleep has been getting increasingly better since your last updates!
Glad that external femurs isn't being the worst segment, in terms of pain levels, in your lengthening too! Surprised about the tibial pain levels being higher. Just goes to show everything regarding CLL is not a very precise science, and will greatly vary on an individual basis.
Even among non-cosmetic LL, we still haven't fixed protocols for pin-site cleaning!
Not that any of this matters, anyway. As you shared once in the forums, your father was a super tough in guy in his life. You have those genes in you. You'll manage everything.
I'm sure some days are suc king really badly, but try to keep the adage in mind: the pain is only temporary, while the gain is not. Onward and upward, supra et ultra!
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We want to see more pictures, android! Please give us an report every 3-5days
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We want to see more pictures, android! Please give us an report every 3-5days
Hey, he's sharing this very personal journey with all of us out of his own accord. There's way more proof than even necessary that he's a real patient currently undergoing CLL with the mentioned doctors, and also not having anyone else (like the doctors themselves) posting in his place. When something as big as that is out of the way, whatever he wants to do with his diary should be left entirely to himself alone (not that it already isn't): update frequency, amount of pictures/info he's sharing, etc. He could even agree with your position, but not be able to physically do that right now. Have you thought about that?
I hope you understand. :D
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We want to see more pictures, android! Please give us an report every 3-5days
How entitled do you have to be to post something like this? Be grateful he’s contributed what he has.
Anyways great diary Android, stay strong. I’m hoping I can have a consultation with Solomin soon. I know you did your research so I’m now strongly considering him.
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We want to see more pictures, android! Please give us an report every 3-5days
If Android's experience is anything like mine, he will be very apathetic during this stage of lengthening. Probably more because I imagine external LL is more painful. The dull pain and lack of sleep saps your motivation. This is really asking too much. In fact, I'm really impressed with how dedicated Android is in updating his diary with such detail at this point. Him and OYG have been giving extremely detailed updates after starting the lengthening process. I remember when I was at that stage, it took me forever to fill out a simple online form (applying for ACA as I was no longer under my employer's insurance). A simple task like that took me a long time (and my parents had to pester me really hard to get me to fill it out).
Asking him to update every 3-5 days is really too much to ask. Be patient. Updates will come.
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Android did the doctor say it’ll be harder for your bones recovery or will it be as if your only lengthening one segment thanks for all the information and your diary.
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Time for more questions!
Is it necessary to have epidural catheter, can't we have a general anaesthesia given?
I think you can ask for general during surgery, but you'll probably be hooked up to a epidural anyway because the post-operative pain lasts several days. Seriously, it hurts when the anesthesia syringe runs out before the doctor can change it. It's a very thin tube that runs along your back, and I didn't feel it so it didn't bother me to have it.
Happy to hear from you Android!
Is it possible for you to get sleeping pills since sleep is really important to recover...and if you just take it for the first 2-3 weeks I'm sure you won't get addicted to it. I took strong sleeping pills whenever I was in a hospital.
The itching, do you think it's an allergic reaction, since you mentioned antihistamines?
What helps against the inflammation of your foot?
I didn't specifically ask for sleeping pills, but got some melatonin. Didn't work so well since all it does it induce sleep, not knock you out.
The itching is basically due to poor hygiene. You can't shower while in the hospital, and since it's been hot in St. Petersburg, you accumulate sweat. Your legs are still covered with Betadine from the operation, and that doesn't help I'm sure.
The inflammation of the foot was basically caused by constant pressure and rubbing from the homemade dorsiflexion boot. Hard to avoid if you have sensitive baby feet like me.
How much have you spoken to the docs about scar tissue inhibiting your ROM with external femur lengthening, of at all? If so. how do they respond to you as far as dealing with ex femur complications?
They haven't mentioned scar tissue at all, though I do feel some harder skin near one of the pins. Jim suspects that it's due to a different frame setup, specifically wires near the knee.
Do you care about too many scars on both tibia and femur with externals ? or do you believe that scar removing surgery can fade those to insignificance? did you discuss the scar topic with Kulesh and SOlomin? thanks a lot.
Not really, otherwise I wouldn't be doing this. I hope to have most of the scars fade via creams. If there's an especially bad scar, I'll consult with the doctors. Jim and I wondered if they offer scar revision, but haven't asked yet.
I thought external femoral lengthening was hell on Earth that should be avoided at all cost.
Do you know your wingspan? What will you do if you manage all 13cm and see that your arms don't fall as low as you want them to go? Iamready did ~12cm if I recall and he ended up doing arm lengthening, though I don't know how low his wingspan was.
It's not so bad when it's only on one side. I have more pain on my tibia more than my femur. It's certainly in convenient when trying to sit on the toilet, but I can still rest my butt cheek on the seat!
My wingspan was slightly longer than my height, but not significantly so. Proportions don't bother me as much, I'm in the camp that believes that longer legs look attractive. And it's not like I'm lengthening my torso so I can't reach my pants pockets anymore, that won't change.
Hey, man, hoping from here that your sleep has been getting increasingly better since your last updates!
Sleep has been a rollercoaster! Sometimes I get pain at night, sometimes I can't sleep, and yesterday I slept undisturbed until morning. If I lose sleep I catch up during the day, so it's not a big deal overall.
We want to see more pictures, android! Please give us an report every 3-5days
I might have a lot of free time, but somehow it passes quickly! Using the laptop was very inconvenient for me in the hospital as well, so that makes it less enticing to update frequently. CLL takes a lot of patience, so perhaps it's good practice that you'll have to wait patiently for updates!
If Android's experience is anything like mine, he will be very apathetic during this stage of lengthening.
I'll be honest, I'm a lazy guy to begin with! And these updates usually take an hour or more to write, so naturally I'd rather just play games, talk to friends, or take a nap. And this 2010 MacBook Pro is heavy and hot!
Android did the doctor say it’ll be harder for your bones recovery or will it be as if your only lengthening one segment
No mention about that, though I'm sure the more bones you break, the tougher the recovery. But honestly I'm not having much trouble right now.
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Alright, daily updates are going to stop eventually, since things get a bit boring from now on. Changing the date format since I'm tired of counting. Off we go!
July 11: Don't Mind the Blood
Did training by myself a bit, basically getting my right leg with tibial frame dangling off the bed. Left leg with femur frame won't bend much, so left that alone.
(https://i.imgur.com/DWgOwryl.jpg)
Irina came for another training session. Sat at the edge of the bed, stood up with the walker, transferred to chair, back to walker, and back to bed. One of the pins started bleeding; I didn't even feel it, she had to point it out to me. Wiped it up, no big deal.
Showed Dr. Kulesh my blister when he visited. He said that he'll have Dr. Nikita drain it during tomorrow's rebandage... Heck yeah! I hate this thing. It's getting huge, so walking feels really awkward with it. I'm worried it's going to pop and get infected. Dr. Kulesh said this is why he doesn't like foot holders, not sure what he would use instead.
July 12: Drain That Sucker
Dr. Nikita and another doctor arrived around noon for rebandages, and yes... Drained my blister! Simply disinfected it, sliced it with a scalpel, and drained tons of yellowish fluid with gauze swabs. No pain at all, didn't feel good either, but psychologically it was amazing.
Decided to try to sit at the edge of the bed by myself. Got pretty far, tibial frame leg has no problems dangling from the bed. Femoral frame leg however, the knee ROM is still so limited that it took about 15 min to get it in this position. I gave up and laid back down, but within minutes a caretaker came in to change the sheets. She asked if I can transfer onto the chair, so with her help I did it. Felt good! Got back on bed with her help. This high bed makes it pretty difficult.
(https://i.imgur.com/fen121pl.jpg)
Physiotherapist arrived around 5 PM. Started with stretches on bed, then I sat on the edge of the bed. Stood up with the walker, actually took a couple steps forward, then back, before sitting back down! Rested a little, got back up on the walker... Was too tired to take another step. Sat back down, end of session. Baby steps.
July 13: It's Normal to Not Be Normal
Doctors Solomin and Kulesh came to visit. Dr. Solomin was concerned about my femur frame leg, saying it shouldn't be this restricted in ROM; that it gets like this after 5 cm. He abruptly lifted my femur frame to check it, which was painful. I told him I'll train harder. Dr. Kulesh said he'll drop by again later.
Dr. Nikita came at 3:40 PM for rebandages. Told him about my femur knee problem. He said it's normal. That's it's not normal, but that's normal... Femur is harder.
Dr. Kulesh visited at 6:20 PM. He said that my knee is normal, that this is typical for his patients.
July 14-15: Eye of the Tiger
Talked with Jim a lot, got inspired to train myself harder. Took his advice and got on the walker and just stood for as long as I could, which was about 3-4 minutes. Repeated this a few times, then also walked in place. It was tough at first, but I was encouraged since I was better at it the very next day.
(https://i.imgur.com/PfVi4ovl.jpg)
Asked Dr. Kulesh for some supplies like more wet wipes and melatonin to help me sleep. Also asked for a Big Mac since Jim mentioned getting McDonald's!
July 16: I CAN WALK
I walked!!!!! I walked around the room and was able to do stuff that was impossible just a few days ago. I looked in the closet to see what's inside since I was really curious; my mom had put stuff in there for me but I couldn't remember what. Found some toilet paper and paper towels, score. Moved some things away from the window, because it gets scorching hot early in the day.
A little later, I decided that I'll go to the bathroom. Hobbled my way over, saw my suitemate for the first time in weeks. Advantage of being male: don't need to sit to pee! Still took a while, but not too hard. Saw myself in the mirror for the first time in over two weeks, was really strange. I looked better than I felt, so that's nice. It was amazing to wash my hands with running water, and felt great to use soap. Washed my face too, awesome.
Talked to suitemate for a bit to catch up. Decided to take a look in the fridge, I had some expired milk I needed to trash. Found yogurt that was still good, which I proceeded to drop. Picking that up was a pain, but I did it. Suitemate couldn't see this entire ordeal, but said that it was the most interesting thing to happen after getting here. Goes to show just how mundane hospital life can be!
Got my Big Mac. Dr. Nikita didn't quite understand what a "meal" was, so no fries or drink. I'll have to use words like "set" or "combo" moving forward. But I said it's ok, don't spoil me; it'll give me something to look forward to for next time. And let me tell you, this tasted like the best food ever. It was the first non-hospital food since I got admitted, and it was glorious. It was gone within seconds.
Later on I decided it was time to go to the bathroom again, this time to do the deed. Definitely more work, but it was possible. It's a really tight bathroom so it was tricky. Getting back up was a little scary too, since all I could grab onto other than the walker was the sink. But wow, it was great. Goodbye, bed pan!
Irina came for training again. Showed her that I could walk, was very impressed. She said if I ever need more training, I know her contact info.
Later in the day I decided to pee again. This time my legs felt like bricks. I guess getting up five times was a bit much for my first day walking. I'll probably end up peeing in a bottle once I move into an apartment too, emptying it every few hours in batches. I need to conserve my energy for cooking and emergencies.
Speaking of apartments, I emailed Dr. Kulesh that I can walk, and that I'm ready to move out. He said he was happy for me, and that two staff members will assist me in my move on Thursday. It's amazing how fast he replied and got the ball rolling, it's all happening so fast!!!
July 17: First X-Rays Since Starting Distraction
Actually managed to put on underwear so that I could get transported to St. George's, where I had my first consultation with Dr. Kulesh. They have better equipment there, and I think the machine at St. Elizabeth's wasn't working right that day.
Back to the underwear bit, holy smokes. It was tough to do alone with a leg that doesn't bend. Basically I threw them down on the floor and wiggled my feet until they went into the leg hole. Slowly pulled them up, stretched it past the frames and pins, and it worked.
(https://i.imgur.com/58YApndl.jpg)
Dr. Nikita also came to wrap up my frames since I don't have my custom frame covers yet. He told the caretaker that I'm moving out on Thursday, and she was happy but sad at the same time. She said a lot of things, recognized a few ("he tells me thank you so often when he doesn't have to!"), and Dr. Nikita summarized it has: she says you are good people.
Anyway, got on a stretcher and went for a ride. It was about 10 minutes away, and I didn't get to see much. Took me through the back entrance and bam, I'm in the x-ray room. Made a few uncomfortable but tolerable poses and went back; the whole process was about an hour or two out of my day.
Awful sleep this night! Maybe two hours max total, basically was awake the entire night and into the morning. It wasn't specifically pain, but restlessness and crazy itching. Luckily I can catch up with naps.
July 18: X-Ray Results & Last Night at the Hospital
Had a pretty uneventful day. Two of the older ladies that help around with caretaking and food was telling me how they'll miss me. It was really nice of them.
Got an email from Dr. Kulesh asking how much I had lengthened. I replied 10.5 mm. He replied saying that my x-rays show 13 mm lengthened, so please be more accurate. I double checked my spreadsheet and I was missing a day; told him that it was actually 11.5 mm. Still overshot, but not as bad.
In that email he attached my x-rays, which I think was a mistake. I didn't have to ask for them, so that was convenient. So here they are, S-osteotomy for the tibia and a straight cut for femur.
Femur:
(https://i.imgur.com/F2bjt5Il.jpg)
(https://i.imgur.com/ZsGMWiAl.jpg)
Tibia:
(https://i.imgur.com/2rfBsGRl.jpg)
(https://i.imgur.com/MZ15n5Il.jpg)
Slept really well this night. Took a while to fall asleep, but once I did, I was out until 7 AM since I heard the nurses moving around.
July 19 (~3 weeks post-op): Moving Day
Today's the day! Said some good byes, got another rebandage, and off I went on my stretcher. The apartment is just north of St. Petersburg, about 4 km (2.6 miles) away from St. Elizabeth's.
As for rebandage, this was about three weeks post-op. So Dr. Nikita finally decided to remove my stitches. Feels good, man.
(https://i.imgur.com/TSbHrlHl.jpg)
(https://i.imgur.com/z7HUgwLl.jpg)
He gave me a ton of supplies to do it myself. He didn't specifically teach me, but I've seen him do it so many times that it won't be a problem.
Unfortunately my leg won't bend and my wheelchair didn't arrive in time, so I went to the apartment with a stretcher. I have no idea what went through my Airbnb host's mind, but hey... Money's money! By some miracle the stretcher fit in one of the two elevators, just barely.
(https://i.imgur.com/bYeaAQbl.jpg)
The place is nice. It has no TV, but I don't care since it has WiFi. No air conditioning, but it's not as hot as the hospital so I won't need it. I really want Smart Homes to catch on, because it's getting dark and I don't want to go to the light switch!
(https://i.imgur.com/QgzDvZgl.jpg)
I tried using the bathroom earlier, and it worked out great. There's a sink on my right and a washing machine on my left, so I can use them to lift myself up after I sit. This is awesome. Wish that the seat was higher, sort of want a raised seat installed.
It's a real chore to feed myself three times a day. Really, the freedom is great and it's much cheaper, but having to think about food -- and more importantly getting up to eat -- is daunting. But at least it'll taste better!
Speaking of cheaper, this place is way cheaper than the hospital. The municipal clinic, St. Elizabeth's Hospital, charges 4400 rubles ($70) per day. This Airbnb cost me $1471 for 91 days, or just over $16 per day. At this rate, I can order food every day and still save.
And speaking of ordering food... That's exactly what I did about 20 minutes ago. There's a restaurant on the ground floor that serves all kinds of food, from burgers, pizzas, pasta, to borscht. Tonight I got a huge burger, pasta, fresh OJ, and dessert for 1159 rubles ($18). I ordered extra so that I can heat stuff up later, pretty excited!
*A little later* It's 10:38 PM now, ate dinner. Rushed to the door to answer it, was very painful. It was my fourth time getting up to walk, so my legs were not happy. The food was good, fifth time getting up to put the leftovers in the fridge... Wow, that was painful. For a good 25 minutes I just didn't want to think about anything because of the pain. Now I barely feel anything, so I really have to limit the number of times I walk every day, especially since the distances are a little greater now. Hopefully it's easy to get in and out of that wheelchair!
Lastly, Dr. Kulesh asked me to lengthen 1.5 mm per day on my femur, so two more turns per day. Good news, it means I have healthy regenerate and I'll finish faster. Bad news, it might be a little less comfortable.
That's it for now. Onward and upward!
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Great stuff Android..I am not sure whether I will have the time or resources to do this surgery but reading diaries here gives me a great idea on what to expect..
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great update
btw arent they supposed to rim you bones if youre doing latn?
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Glad you've been keeping us updated, android!
Is it true that you have to wait for 1 till your current tibia and femur is consolidated? And another year lengthening the other tibia and femur? So in total 2 years?
In the first 3 weeks you couldn't walk? How did you manage to go to the toilet for taking a crap ?
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btw arent they supposed to rim you bones if youre doing latn?
If LATN is planned, the doctors will place pins and wires slightly off-center to leave room for the IM nail. Reaming will be performed during the second surgery just before the IM nails are inserted. It's a good idea to do reaming after distraction and correction, because then the nail will have less resistance going in (even tiny misalignments during distraction would make it very difficult for insertion).
Is it true that you have to wait for 1 till your current tibia and femur is consolidated? And another year lengthening the other tibia and femur? So in total 2 years?
In the first 3 weeks you couldn't walk? How did you manage to go to the toilet for taking a crap ?
Mentioned both these things already.
As for when we could start the next set of legs in the cross-lengthening journey, Dr. Kulesh recommended a year apart. Dr. Solomin said as soon as the bones look consolidated via x-rays. Dr. Kulesh admitted that only one patient has ever taken his advice, adding that they had a great recovery.
Source (http://www.limblengtheningforum.com/index.php?topic=8993.msg91662#msg91662)
Nope, could not walk for almost three weeks. I used a bedpan, it's in the diary under July 3 (http://www.limblengtheningforum.com/index.php?topic=8993.msg92131#msg92131).
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Hey Android,
Long time lurker, short time poster.
I have seen you in every thread and you are most helpful and positive.
I honestly did not see this coming.
Especially cross lengthening.
I am in the same boat.
I actually made a post about 2 months ago, that I was planning to go to Medem for Cross lengthening.
Mainly because of the price and doctors.
My issue is that after the first phase is complete.
I want it to remain a secret from my family.
Would that be possible after returning home to consolidate, assuming I can walk normally or half decently by then?
Is the knee height difference apparent in walking? or when wearing clothes?
I know you answered this but you will complete the first phase then come back in a year or at the first sign of consolidation?
You are doing 7 femurs and 5 tibia?
I want to do the same exact thing,
Really, do I need to save $40k even for Russia for LATN cross lengthening?
I am up next
I am confirming all of these details because truly its about my time as well.
Just saving up now, working 2 jobs.
Yes I could have PM'ed but maybe it is better to restate the specifics down the thread.
Anyways man let me tell you that I have been in Trauma as my name suggests. Do not want to reveal anything specific but I know the fight in the hospital and the recovery period.
Especially with all the drugs, pain, and being alone.
It drives you insane, and sometimes into a dark place. Watch Comedies. It may sound dumb but it worked for me, I spent a few months in the hospital. Truly my mom was my savior though. It may not be possible but it is good to have a friend that visits. Not necessarily someone you know though, anyone really just to talk and smile with. Even PT, or a nurse, maid, anything.
Another thing I will tell you is that, when it is dark and gloomy, that is one of the best things, because there is only up from there.
Yes you might face a minor complication or even a bigger one (doubt it ). But thats really as low as it gets, and it sucks but there is a light at the end of the tunnel.
When it is all said and done and the rods are out. You will forget all about the most sucky days. Yeah you will remember the journey, but the worst moments will only be remembered as a time you persevered and won.
my 2 cents because you are a helpful member of this forum and I experienced something 10 times worse then lengthening, I came out on top and I did not know if I would ever walk again or live a normal life. Now I am better than ever, truly, but it was a long journey.
It is really just down to these details of being able to hide it , the time frame, and the price. Obviously recovering as well but I think if you work hard and follow these doctor's advice, in conjunction with trying your best, you will be a fine.
One more thing, and this is a long post lol,
Scars man, I know you have not had your frames out yet or even finished lengthening but are they anticipated to be really bad?
The bad ones are atrophic or the pitted, sunken in ones. They get excised or cut out and restitched for a smaller linear, flat scar.
I do not mind scars and they are inevitable but I have met a girl in my college who had achondroplasia and she lengthened her arms and legs using ex fix.
Her scars were horrible. I mean you could tell there was something really fuc*ked up that happened to her. But I think she lengthened over 10 years ago with much larger pins
I have seen other threads for scars like KiloKahns and that is totally doable. So just throwing that out there if you have any insight.
Again man wish you all the best. Hey if you need anything just PM me. We might be strangers but you got a friend in me.
Edit: for typos
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Hi Android, what did your doctors say to you regarding athletic recovery? Did they say that you'll lose much more than if you only did one segment?
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Thank you for your informative and detailed posts.
I am going to St. Petersburg in September and will essentially repeat your process.
While at St. Elizabeth's, where did you keep you phone, and laptop, and other valuables during surgery?
Did you bring your own wheelchair or walker or crutches?
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How have you been lately android any new pain any new information on this hope everything is going well for you
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Would that be possible after returning home to consolidate, assuming I can walk normally or half decently by then?
Is the knee height difference apparent in walking? or when wearing clothes?
I know you answered this but you will complete the first phase then come back in a year or at the first sign of consolidation?
You are doing 7 femurs and 5 tibia?
Really, do I need to save $40k even for Russia for LATN cross lengthening?
Scars man, I know you have not had your frames out yet or even finished lengthening but are they anticipated to be really bad?
Hey Troma!
It'll take a few weeks before you can walk normally, even if you get nailing. Observant friends and family will notice that something is wrong. Knee height difference won't be noticeable if you wear pants. You can wear lifts on one foot to even out any discrepancy if you lengthen more on femur.
I'll probably return to Russia as soon as consolidation is at an acceptable level. I will send my doctors regular x-rays so that they can confirm.
My goal was 7 cm femurs and 6 cm tibias, but I may lower the latter to 5 cm. I don't want to risk ballerina for 1 cm, I'll cross that bridge when I get to it.
If you don't have any cash flow while doing this, and you're doing cross lengthening with LATN, then I recommend having $40k. I say this because you may run into surprises, like having to stay at the hospital for entire duration for distraction instead of an apartment.
I'm not too concerned about scars at the moment. I won't deal with it until nail removal a few years in the future.
Thanks for the advice, there are definitely tough days!
Hi Android, what did your doctors say to you regarding athletic recovery? Did they say that you'll lose much more than if you only did one segment?
I didn't ask about it since it's not a concern of mine since I don't play sports.
While at St. Elizabeth's, where did you keep you phone, and laptop, and other valuables during surgery?
Did you bring your own wheelchair or walker or crutches?
I just kept my stuff in the room. Keep them out of sight and you'll be fine.
I didn't bring my own wheelchair or walker. The walker is pretty flimsy, so you might want to pick one out that you feel comfortable with.
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July 20-24: Apartment Hell
So, the past week was rough. First couple days of being in the apartment seemed great, but it quickly dawned on me that this isn't practical for a person with a knee that won't bend.
First, I have to get up a lot more often. Answer the door for food delivery, carry food to kitchen to eat, put leftovers in fridge, answer door for grocery delivery, etc. My legs really couldn't take it, because I feel stabbing pain every time I have to walk. Doing this a couple times a day is tolerable, but some days I had to get up five times. Not being able to answer the door fast enough meant that the delivery person had to come back later, adding an unnecessary trip to the door for me.
Then there was the fear factor. What if I fall? What if I drop my phone? No one will come to check on me, I felt scared. With my painful, shaking legs, it was completely possible for me to eventually collapse and become helpless.
I got a wheelchair delivered, but it was useless with my locked knee. It really hurt to use it, so it was impractical to use.
And... What the heck do I do with the trash? I couldn't even leave the apartment since the walk to the trash schute was so far.
I eventually emailed Dr. Kulesh and Dr. Nikita on the 21st, saying that I need to return to the hospital because I don't feel safe. Dr. Nikita responded that he can get me on the 24th, but then Dr. Kulesh added that I might have to wait until the 29th since there's no agreement with the hospital. I was panicking. But thankfully Dr. Nikita was able to work it out, and picked me up on the 25th.
July 25: Back in the Hospital
I was at the apartment for less than a week, but it felt like eternity. Dr. Nikita and two guys came to pick me up with a stretcher, and I was shuttled back to St. Elizabeth's. The nurses and staff welcomed me back with big smiles, felt great to be back!
https://www.instagram.com/p/BlqAw5iBv-o/ (https://www.instagram.com/p/BlqAw5iBv-o/)
This is the kind of thing I warned about when it comes to money; be prepared to spend more than you initially plan. Apartment was way cheaper, and probably manageable with bilateral tibias, but it was impossible for me.
This night I started to feel really sharp pain on my femur frame knee. Burning, needles, numbness... Seems like nerve pain. The pain goes away if I constantly rub on it, but it surges back up if I stop for 15 seconds. The pain level can range from 6 to 8, I had to get an injection painkiller that night to sleep.
July 26-27: Pain!
I'm currently in pain as I write this, for now the main culprit is the tibia frame leg. The shin feels like it's been hit with a bat, pain level 6-7. Femur frame knee pain comes and goes. I may need to meet with a neurologist to get prescribed some neuropathic painkillers like gabapentin, which Jim recommended. I have to go to Medem, the private clinic, to get a prescription; sort of want to avoid that since it's so much work to go there with a stretcher... We'll see.
I'll get x-rays on Monday, hoping for good progress.
Total Lengthened so Far:
Tibia 22.5 mm (1 mm day)
Femur 24.5 mm (1.5 mm day)
Estimated Days Remaining Before Correction/Nailing: 33 days
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Almost only one more month until correction... Hang in there!!
So glad Dr. Nikita was able to arrange for you to get out of the apartment, and that it didn't take any longer. Was very glad to hear you were managing to walk, otherwise!
Sorry to hear about the recent pain. I hope it becomes better now that you're back at the hospital again. Have to try believing in it.
I've only been logging in here to check your diary. I'm glad you're still able to at least play games and such while lengthening. Others have described their experience as becoming total zombies! Thank you very much for the all updates, Android.
Now's the final lap. You do - multiple - one hour updates, despite even getting 6-8 pain levels. You'll handle this!
I also honestly thought I would have a lot more questions when your journey finally came. Yet, I can almost never think of anything.
You have already shared it before, but I guess it doesn't hurt asking again?
- What meds and supplementations are you on right now, at this specific part of your journey? Were there any changes regarding those (as in: swapping for another brand with much of the same effects)?
- Did you stop taking any med or form of supplementation that you were taking after your initial week(s) post-surgery?
- Did you recently stop taking anything else?
- Did you recently add any new form of supplementation to your daily routine?
Haven't managed to check on here as much as I wish I could, but the feelings stay the same: still wishing you the best everyday. Wardon and wardup!
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i had the same problem but got the arrangement with my nurse daughter and she was coming every other day to cook some stuff and keep me company. Doing LL on your own seems almost impossible and i was doing tibias.
edit
as far as i know Dr kulesh can arrange some lady to cook and clean the house. Wouldnt that be enough?
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Thanks!
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Nice update! Hang in there, Android!
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Hey myloginacc! Yeah, I can't wait to get these frames off. Pain is manageable now with injections, but it doesn't mean I can walk without pain. Basically I'm fine if I don't move much, so I'm still anchored. I get an injection in the morning and at night, Dr. Kulesh said it's better for my body than pills if it continues to work.
Now, the questions:
- What meds and supplementations are you on right now, at this specific part of your journey? Were there any changes regarding those (as in: swapping for another brand with much of the same effects)? Still just Omeprazole and Pradaxa. Nurofen (ibuprofen) if I need something for the pain, but now I just ask for injections since I'm in the hospital. I need to ask what it is.
- Did you stop taking any med or form of supplementation that you were taking after your initial week(s) post-surgery? I planned on taking supplements like weight gainers and bone growth pills, but I decided to save that for consolidation. Shakes, it's just hard to make it without a blender; clumps a lot. As for the bone growth pills, I don't want above-average regenerate because then I'd have to increase my daily distraction rate!
- Did you recently stop taking anything else? Nope
- Did you recently add any new form of supplementation to your daily routine? Nope
as far as i know Dr kulesh can arrange some lady to cook and clean the house. Wouldnt that be enough?
From what I recall during consultation, he no longer offers this. I'm sure he'll help if you ask nicely though.
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Android have you done any weight baring exercises yet and if not has the doctors told when it’ll be possible to try and put weight on your legs
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So how did it feel to have your femur sawed completely through? Can you describe the pain once the meds first started to wear off post surgery?
My fear is that it comes up like "Oh my god, oh my fking god!!" And it just comes rushing to you.
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Hello Android
I am really glad to see you progressing. 1,5 mm a day is not bad at all. As you mentioned, you will finish earlier than expected. But I hope it will not be uncomfortable. Just listen to your body and adjust the lengthening accordingly.
I wish you truly good luck. May God bless you.
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Hey Android
It's quite impressive how you are handling on your own in a place like this, in a foreign country without language knowledge. And somehow you also have the will to update the diary with quality info. I couldn't do that for the life of me when I was lengthening. I did definitely enjoy reading the diary.
How much did you lengthen already and how much do you plan to? I suggest doing a smaller amount such as 5/5 tibia/femur or perhaps 4/6. Lengthening the tibia over 5 cm hurts the ankle joint quite a bit. With 5/5 cm you will have less time lengthening, faster bone healing and recovery, better proportions and joint function.
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Android have you done any weight baring exercises yet and if not has the doctors told when it’ll be possible to try and put weight on your legs
Ilizarov frames are weight bearing, so I've been doing some standing and walking exercises with a walker. It's pretty painful for me, so I don't walk much. This is Dr. Kulesh's opinion, but he doesn't necessarily recommend weight bearing during lengthening, so I don't feel so bad that I'm mostly immobile on my bed.
So how did it feel to have your femur sawed completely through? Can you describe the pain once the meds first started to wear off post surgery?
I don't feel pain at the osteotomy sites at all. I don't feel pain inside my leg where the bones are broken either. After the anesthesia wore off, I just felt general pain all over my legs, not a particular spot. So don't fear the osteotomy itself, it's no big deal.
I am really glad to see you progressing. 1,5 mm a day is not bad at all. As you mentioned, you will finish earlier than expected. But I hope it will not be uncomfortable. Just listen to your body and adjust the lengthening accordingly.
I wish you truly good luck. May God bless you.
Yeah, 1.5 mm is not bad at all. Jim and Pope did higher rates and that seemed painful though. Thanks Rocky, may God bless us all!
It's quite impressive how you are handling on your own in a place like this, in a foreign country without language knowledge. And somehow you also have the will to update the diary with quality info. I couldn't do that for the life of me when I was lengthening. I did definitely enjoy reading the diary.
How much did you lengthen already and how much do you plan to? I suggest doing a smaller amount such as 5/5 tibia/femur or perhaps 4/6. Lengthening the tibia over 5 cm hurts the ankle joint quite a bit. With 5/5 cm you will have less time lengthening, faster bone healing and recovery, better proportions and joint function.
Whoa, hey Overdozer! Your diary was my main inspiration for doing cross lengthening, Jim's helped me to pull the trigger. Glad that you're enjoying my diary.
So far the language barrier hasn't been too bad thanks to Google Translate. I've learned some Russian as well, so I can at least communicate with the nurses. They really like it when I speak Russian, their faces light up.
The main reason why I don't update my diary as often as I'd like is because I'm using an old, heavy Macbook Pro with a terrible battery life. Definitely bringing another laptop when I come back for my second session.
I've lengthened over 3 cm on both segments, hoping for 6 cm tibia and 7 cm femur. I might lower my tibia goal to 5 cm if I face any difficulty, so far I don't feel any pain at all and my dorsiflexion is OK.
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A general update and some topics of interest!
Latest X-rays: July 30, 2018
At this point, the total distracted was 2-2.5 cm for the femurs, 2.2-2.5 cm on the tibias.
Tibia:
(https://i.imgur.com/RKsK6OIl.png)
(https://i.imgur.com/AyvWewCl.png)
Femur:
(https://i.imgur.com/bC2b1fYl.png)
(https://i.imgur.com/5snjfu1l.png)
Pain
I started getting some really bad nerve pain on my femur frame leg shortly after returning to the hospital. I received injections (I think it was ketoprofen) for the pain twice a day, a few times twice at night an hour apart since it was so bad. It's a sharp, burning pain that you can't ignore; it can range from pain level 6 up to 9.
Once I reached pain level 9, I asked Dr. Kulesh to set up an appointment for me with a neurologist. A day or two later Dr. Kulesh and the neurologist came to my room to do some tests, and I got a prescription for some meds. Dr. Nikita came by later that day with my meds, which are pictured here:
(https://i.imgur.com/n2HTw4dl.png)
Lyrica (150 mg) is the main actor here, and it does a good enough job. I need 2 to 3 of these a night to sleep well.
The other two are Ipidacrine and thiotic acid.
As for my tibia frame leg, it doesn't hurt much at all. Sometimes the shin hurts, but it hasn't made me want to call the nurse for it or anything. Hurts really bad when I walk, and will remain painful for about 30 min, but that's about it.
What do you do all day?
I really don't do much other than lengthen and take pills, which I do every couple hours. I use my phone a lot to watch YouTube, listen to podcasts, and play games. Honestly, this is pretty much what I did in my able-bodied days if I didn't get invited to hang out.
While I was living in the apartment with WiFi, I binge watched a few shows: Better Call Saul (Season 2), The Americans (Season 6), and Cobra Kai. Cobra Kai was a surprise for me, it was as awesome as all the reviews claimed it to be.
When I'm up to it, I work on an online Udacity course, the Android Basics Nanodegree (https://in.udacity.com/course/android-basics-nanodegree-by-google--nd803). I got a free scholarship for it and was selected among my peers to advance in the program. Hell of a timing for this, but I'll do my best to complete it so I can get my certificate.
What happened to the cute nurse?
Ah, Alice. Great person. One night she came into my room to just chat until she was summoned by another patient. She came back and asked if she was bothering me, and I said no. We talked until the buzzer went off again, and did that one more time. She asked a lot of questions about me, so I'm guessing there's some interest.
Two days later it was her shift again. This time she didn't chat with me much since she had newer nurses to babysit and teach. I had to call her though for my knee pain, gave me a shot. An hour later I was still in very bad pain, so I got a second shot.
I complained that I was hungry, saying that the dinner that night was awful (curd, bread, and tea). I was just making small talk really, but after a few minutes she came back with two plates loaded with food!
Here's my dinner:
(https://i.imgur.com/Z10iHAql.png)
And here's what Alice brought:
(https://i.imgur.com/AQexYFcl.jpg)
(https://i.imgur.com/yHh5dCCl.png)
She heated up the meat pies and even cut up some veggies. I was overwhelmed with gratefulness.
So yeah, next time I see her I'll ask for her WhatsApp. Wish me luck.
Total Lengthened so Far:
Tibia 31.5 mm (1 mm day)
Femur 34.75 mm (1.5 mm day)
Estimated Days Remaining Before Correction/Nailing: 27 days
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Most detailed diary by far and thank You for keeping us updated. I wanted to get LL this month as I had planned to do 2 segments. I tried to consider a few options, cross lengthening was one of them. From what I can read from this and other diaries that Femurs and externals are unwelcoming. Probably i will save more money and do external Tibias and internal Femurs. Still not sure what is better to do first.
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A general update and some topics of interest!
Latest X-rays: July 30, 2018
At this point, the total distracted was 2-2.5 cm for the femurs, 2.2-2.5 cm on the tibias.
Tibia:
(https://i.imgur.com/RKsK6OIl.png)
(https://i.imgur.com/AyvWewCl.png)
Femur:
(https://i.imgur.com/bC2b1fYl.png)
(https://i.imgur.com/5snjfu1l.png)
Pain
I started getting some really bad nerve pain on my femur frame leg shortly after returning to the hospital. I received injections (I think it was ketoprofen) for the pain twice a day, a few times twice at night an hour apart since it was so bad. It's a sharp, burning pain that you can't ignore; it can range from pain level 6 up to 9.
Once I reached pain level 9, I asked Dr. Kulesh to set up an appointment for me with a neurologist. A day or two later Dr. Kulesh and the neurologist came to my room to do some tests, and I got a prescription for some meds. Dr. Nikita came by later that day with my meds, which are pictured here:
(https://i.imgur.com/n2HTw4dl.png)
Lyrica (150 mg) is the main actor here, and it does a good enough job. I need 2 to 3 of these a night to sleep well.
The other two are Ipidacrine and thiotic acid.
As for my tibia frame leg, it doesn't hurt much at all. Sometimes the shin hurts, but it hasn't made me want to call the nurse for it or anything. Hurts really bad when I walk, and will remain painful for about 30 min, but that's about it.
What do you do all day?
I really don't do much other than lengthen and take pills, which I do every couple hours. I use my phone a lot to watch YouTube, listen to podcasts, and play games. Honestly, this is pretty much what I did in my able-bodied days if I didn't get invited to hang out.
While I was living in the apartment with WiFi, I binge watched a few shows: Better Call Saul (Season 2), The Americans (Season 6), and Cobra Kai. Cobra Kai was a surprise for me, it was as awesome as all the reviews claimed it to be.
When I'm up to it, I work on an online Udacity course, the Android Basics Nanodegree (https://in.udacity.com/course/android-basics-nanodegree-by-google--nd803). I got a free scholarship for it and was selected among my peers to advance in the program. Hell of a timing for this, but I'll do my best to complete it so I can get my certificate.
What happened to the cute nurse?
Ah, Alice. Great person. One night she came into my room to just chat until she was summoned by another patient. She came back and asked if she was bothering me, and I said no. We talked until the buzzer went off again, and did that one more time. She asked a lot of questions about me, so I'm guessing there's some interest.
Two days later it was her shift again. This time she didn't chat with me much since she had newer nurses to babysit and teach. I had to call her though for my knee pain, gave me a shot. An hour later I was still in very bad pain, so I got a second shot.
I complained that I was hungry, saying that the dinner that night was awful (curd, bread, and tea). I was just making small talk really, but after a few minutes she came back with two plates loaded with food!
Here's my dinner:
(https://i.imgur.com/Z10iHAql.png)
And here's what Alice brought:
(https://i.imgur.com/AQexYFcl.jpg)
(https://i.imgur.com/yHh5dCCl.png)
She heated up the meat pies and even cut up some veggies. I was overwhelmed with gratefulness.
So yeah, next time I see her I'll ask for her WhatsApp. Wish me luck.
Total Lengthened so Far:
Tibia 31.5 mm (1 mm day)
Femur 34.75 mm (1.5 mm day)
Estimated Days Remaining Before Correction/Nailing: 27 days
Good one, keep us posted. BTW, you can get some action from Alice next time she comes to you at night to chat grab her hands and start from there. Once I got some action with my friends hot mom like that - I was sleeping in their house one night, she came to chat, I felt she needs some action, and escalated her and then..my first bang bang
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Your femur regenerate looks very good. Tibia isnt too bad as well. I just wonder how this osteotomy in tibia affects consolidation. Any info from Kulesh on previous patients?
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Good one, keep us posted. BTW, you can get some action from Alice next time she comes to you at night to chat grab her hands and start from there. Once I got some action with my friends hot mom like that - I was sleeping in their house one night, she came to chat, I felt she needs some action, and escalated her and then..my first bang bang
wtf?? ::)
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wtf?? ::)
LOL WTH man theres some weirdos on this forum.
Anyways Android you're doing awesome. Keep up the good work ! Im planning my trip shortly.
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wtf?? ::)
? All I am saying is that if a woman is coming to you at night to chat - that is a golden chance to gradually escalate her and make her hot/horny and get action . In fact, many a times she may already be on heat and may be coming expecting you to escalate and take some lead/give some cues, in that case it will be easy/fast escalation, if she is not coming with the intention to get action then the escalation is still possible may take more time and if you don't see positive reaction to your escalation then you can let it go and just chat.
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Wow, that's different!
Do they teach these "escalation" techniques in your school or is this just something you figured out on your own?
I wonder if maybe you just might be weirding up Android's journal a bit? Do you think? Just maybe?
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Good one, keep us posted. BTW, you can get some action from Alice next time she comes to you at night to chat grab her hands and start from there. Once I got some action with my friends hot mom like that - I was sleeping in their house one night, she came to chat, I felt she needs some action, and escalated her and then..my first bang bang
Riveting tale, comrade.
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A general update and some topics of interest!
Latest X-rays: July 30, 2018
At this point, the total distracted was 2-2.5 cm for the femurs, 2.2-2.5 cm on the tibias.
Tibia:
(https://i.imgur.com/RKsK6OIl.png)
(https://i.imgur.com/AyvWewCl.png)
Femur:
(https://i.imgur.com/bC2b1fYl.png)
(https://i.imgur.com/5snjfu1l.png)
Pain
I started getting some really bad nerve pain on my femur frame leg shortly after returning to the hospital. I received injections (I think it was ketoprofen) for the pain twice a day, a few times twice at night an hour apart since it was so bad. It's a sharp, burning pain that you can't ignore; it can range from pain level 6 up to 9.
Once I reached pain level 9, I asked Dr. Kulesh to set up an appointment for me with a neurologist. A day or two later Dr. Kulesh and the neurologist came to my room to do some tests, and I got a prescription for some meds. Dr. Nikita came by later that day with my meds, which are pictured here:
(https://i.imgur.com/n2HTw4dl.png)
Lyrica (150 mg) is the main actor here, and it does a good enough job. I need 2 to 3 of these a night to sleep well.
The other two are Ipidacrine and thiotic acid.
As for my tibia frame leg, it doesn't hurt much at all. Sometimes the shin hurts, but it hasn't made me want to call the nurse for it or anything. Hurts really bad when I walk, and will remain painful for about 30 min, but that's about it.
What do you do all day?
I really don't do much other than lengthen and take pills, which I do every couple hours. I use my phone a lot to watch YouTube, listen to podcasts, and play games. Honestly, this is pretty much what I did in my able-bodied days if I didn't get invited to hang out.
While I was living in the apartment with WiFi, I binge watched a few shows: Better Call Saul (Season 2), The Americans (Season 6), and Cobra Kai. Cobra Kai was a surprise for me, it was as awesome as all the reviews claimed it to be.
When I'm up to it, I work on an online Udacity course, the Android Basics Nanodegree (https://in.udacity.com/course/android-basics-nanodegree-by-google--nd803). I got a free scholarship for it and was selected among my peers to advance in the program. Hell of a timing for this, but I'll do my best to complete it so I can get my certificate.
What happened to the cute nurse?
Ah, Alice. Great person. One night she came into my room to just chat until she was summoned by another patient. She came back and asked if she was bothering me, and I said no. We talked until the buzzer went off again, and did that one more time. She asked a lot of questions about me, so I'm guessing there's some interest.
Two days later it was her shift again. This time she didn't chat with me much since she had newer nurses to babysit and teach. I had to call her though for my knee pain, gave me a shot. An hour later I was still in very bad pain, so I got a second shot.
I complained that I was hungry, saying that the dinner that night was awful (curd, bread, and tea). I was just making small talk really, but after a few minutes she came back with two plates loaded with food!
Here's my dinner:
(https://i.imgur.com/Z10iHAql.png)
And here's what Alice brought:
(https://i.imgur.com/AQexYFcl.jpg)
(https://i.imgur.com/yHh5dCCl.png)
She heated up the meat pies and even cut up some veggies. I was overwhelmed with gratefulness.
So yeah, next time I see her I'll ask for her WhatsApp. Wish me luck.
Total Lengthened so Far:
Tibia 31.5 mm (1 mm day)
Femur 34.75 mm (1.5 mm day)
Estimated Days Remaining Before Correction/Nailing: 27 days
Good progress!
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Wow, that's different!
Do they teach these "escalation" techniques in your school or is this just something you figured out on your own?
I wonder if maybe you just might be weirding up Android's journal a bit? Do you think? Just maybe?
Learned on my own, basic instincts - you don't need to learn basic instinct. Maybe - IDK - am just sharing my input.
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Cool story, bro. Regarding the cute nurse: don't assume that the whole hospital isn't reading about your escapades /getting the highlights relayed by those who do. Save Alice the questionable pleasure of becoming the laughing stock of the entire hospital.
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First post but I've been lurking a while.
Firstly thanks very much for taking the time to document your journey, it's incredibly helpful.
My only question is: how long is this entire procedure going to take? aren't you going to be out of action for like 2years?
Also why do they leave so long between the two lengthening stages?
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This is the first time I've checked the forums in months. I'm glad you finally did it!
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I've finally thought about the perfect questions to ask you. However, it'll have to wait until you're done with the first phase of cross-lengthening. :)
I hope you've been doing good (as far as LL is concerned), man.
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Hi Android.
I am new to LL as you can see, but first of all I want to thank you for sharing the diary!!! I also share the same height as you @ ~5'4 (well you are taller than me already!) and also want to do a LL that at least bumps my height up by 10cm+ So you are a big role model I am looking up to right now!!! ;)
Seeing how this journey goes from your point of view really convince me to get a LL procedure from this two amazing Russian doctors at the end of this year or beginning of next.
Again, I am really new to the whole LL scene as you can tell... Would you also let me know what long would each stages of recovery take so I can plan out time leave for my job ? You mentioned you will stay for 3 months in Russia. Are you fully recovered after 3 months, or is there more recovery to be done ??? Stupid questions but you know, I am a total newcomer ;D
Thank you and best wish to you!
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I reeeeaaally don't feel like writing a long post on the phone, and my laptop is a pain to get up and going (very heavy, loses charge fast). Here's a quick rundown on Instagram:
https://www.instagram.com/p/BmvgcgxnpnL/ (https://www.instagram.com/p/BmvgcgxnpnL/)
Summary: I developed a complication! Stopped lengthening my femur and started corrections a few days ago; will install hexapod on tibia tomorrow. Surgery for nailing and frame removal for both segments is planned on August 31, this upcoming Friday!
I'll go back and fill in the blanks later in the familiar format.
P.S. - Jim and I were in the same suite for a good while, great guy! Glad that we were able to meet face to face.
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Yo Android!
How much are you planning to lengthen in total for each segment?
What caused the problem for you to stop turning? Is it because your body do not longer accept the stretching of the ligaments or?
Could this complication have been avoided?
Good day!
Arch
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Hey y'all, just wanted to update to say that my nailing surgery yesterday was a success! Gained 5 cm on both tibia and femur for my first step, for a total gain of 10 cm when all is said and done. Will update in more detail in the future, bit too tired for now.
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Thank you. This is very helpful. I’m just wondering how can it cost you just 30k in total when it seems to cost 1000 USD for every 2 weeks to stay in an airnib apartment. Or did I misread and it’s not 1000 USD for every 2 weeks. Is that 30k in total including accommodation for all 4 sections?? So just 30k for the full cross lateral with accommodation? How many months in total will that take?? What about complications, how much spare cash do you need to cover those?? I would like to go to Russia but am worried about how much I would need to cover complications. Will your mum stay the whole time. Is it possible to stay alone I the apartment??
I wasn’t tvto do cross lateral too but have no idea how much I will need in total for everything, including accommodation.
May I ask why you did you not choose Armenia?? What I like about Armenia is that you can pay each month and get all services covered, so no need to worry about finding a carer, finding food, somewhere to stay, etc. I know there were a few bad cases from there but to be fair that is nothing, it seems all doctors get bad cases. Also one of them the guy had already had the surgery elsewhere and had had complications already. I’ve seen their FB page and they appear to have many successful patients.
Thank you for info. And good luck.
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Hey y'all, just wanted to update to say that my nailing surgery yesterday was a success! Gained 5 cm on both tibia and femur for my first step, for a total gain of 10 cm when all is said and done. Will update in more detail in the future, bit too tired for now.
I remember you saying you ran into a few compilations did you get them fixed and also how has the pain been since you’ve gained 5 cm
Have you also been walking any since the 5 cm gain
Sorry about the questions just curious glad to hear your doing good
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Hey y'all, just wanted to update to say that my nailing surgery yesterday was a success! Gained 5 cm on both tibia and femur for my first step, for a total gain of 10 cm when all is said and done. Will update in more detail in the future, bit too tired for now.
Awesome, man!
Take as much time as you need!
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My admiration for you. Brave guy!
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Be strong android.
I wish u the best my friend
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HELLL YEAH Android for the win!
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I've finally thought about the perfect questions to ask you. However, it'll have to wait until you're done with the first phase of cross-lengthening. :)
I hope you've been doing good (as far as LL is concerned), man.
Hey, Android!
I've thought about it for a bit, and I think it may be wiser if I post those questions now? This way you have more time to think about them, while you are still planning/writing/getting well for the next big update. I hope you've been doing as fine as you can be! Again, take as much time as you need.
I wanted to start with the obvious:
- You're obviously the member who has done the most research on distraction osteogenesis on this forum. Even more than that: you actually went through it, and are just finished with the first phase of cross-lengthening. Having all of this in mind, would you say that all your research gave you a good picture of what CLL really is like? Or, as some vets say, you're never truly prepared for, or truly knows, what CLL entails until you actually go through it?
- Has your opinion about height thresholds and CLL changed?
- Was the first phase harder, easier, or just about what you expected it to be, based on all of your research?
- I know it's still early to ask and you have a second phase to go through still, but have you felt the extra 5cms you have are already worth it?
I have a few other more minor and major questions. I'll wait for a more appropriate time to post them. :)
All the best, man.
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Oh, I knew I was forgetting one question. (I ended up asking another question in its place...) This is the last one, I swear. I also don't mind if you only reply to these questions at a much later date! You're, understandably, not in an optimal situation for Q&As, and these are not simple questions.
The other question I wanted to ask was:
- Once, you replied with "Sound advice." to the comment of "Take a deep breath, and look forward to the LL." in a certain thread. Many here seem to struggle with self-hating or suicidal thoughts. How did you take your "deep breath"? What is your advice to stay calm, and look forward to a brighter future, rather than overthink a dire present? It seems you may have had dealt with such emotions in the past, but they don't show through your posting. It's like you reached a higher state of mind. I realize this is a very vague question, so feel free to answer this question however you want to - or to just skip it completely, in case it feels too personal.
Again, wishing you all the best!!
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Thank you Android for all the effort you put to this diary that surely will help others as well as myself. I really hope all is going well with you because LL is not an easy process not to mention in a distant foreign country.
I am an old user from the last forum (2012 I think), I just recently came back with the idea to proceed with LL perhaps this year or the next one and I am very interested in doing it with Dr. Solomin and Dr. Kulesh.
Since you have been very detailed with your diary and you update it quite frequently and because you may have heard it from both doctors or seen patients in similar conditions, I decided to ask you all these questions (sorry) instead of the not so active user diaries from the same doctors, nor I want to spam the forum...
Here are my questions:
- Do you think its possible to remove the Ilizarov frames totally awake without anesthesia? (arms and legs). Do you think any of the 2 doctors may complain about it?
- Do you think its possible to remove the Ilizarov frames once one reaches consolidation stage? even if its not recommended at all, do you know if someone has done it before over there? I know its a bad idea because the bone could break but so is I believe do lengthening at home in your country and some people go that way and end up being ok, at least I assume that is not the ideal thing...
- Correct me if I am wrong but I think the only consequences are for the bone to break and/or losing height because of pressure.
- Now the most extreme one to add to this great combo...do you think it would be possible to do cross lengthening and at the same time do one humerus and after all is done (consolidation) proceed with the other half?
I know you are no doctor to answer all of this to a 100% because there are too many variables, I just want your opinion as well of knowledge that you may have heard from the doctors or seen from other current or past patients like yourself over there or MEDEM.
My dream would be to grow 14-15 cm in height and 7-10 cm in wingspan but I am open to adapt.
And as you may figured it out already, my biggest priority is time, grow, take the frames off and recover on my own with a lot of help back home. Although I guess I wouldn't mind having the frames on for consolidation on the first stage of cross lengthening just take them off on the second stage after distraction...
I would like to length at home because I could eat much better, be more comfortable and do much more, not to mention save money and avoid visa problems...
A little about me so maybe it helps you when answering them...
- EU citizenship.
- Male.
- This year I will turn 26.
- 1.66-67 tall (I guess 5'5-6) and a wingspan of 1.70 (5'7).
- I do not know my sitting height at all, maybe 90 cm (35 inches I think). More or less I guess...but not too many people tower me when I sit, even when compared to much taller men (6+).
- I am pretty sure my body type is of a Mesomorph but I really don't do much exercise or go to the gym, I have very strong and muscular legs, like that of the footballers, naturally because I do nothing. As well as strong arms and forearms. Literally I wouldnt need protein shakes or anything of the sort to grow muscle quickly, I know from experience and comments from fitness friends, I hope it doesnt sound like I am bragging...
Sorry for the long message and the number of questions...and thanks once again!
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Hello Zion ,
If you and android don't mind let me ( not answer your questions ) but post my opinion .
- It's not recommended at all to remove the frame without anesthesia. If u can handle the pain and be calm to remove the wires and screws from ur bone u won't handle ur skin being cut and open to remove the inner screws that dr kulesh uses to support the fibula ( check android tibia x ray ) at the end part of the bone u will find small inner screw that connects the fibula to tibia for better support (Dr kulesh is building more than required stable frame , he wants to play it safer )
- the second quesion : you want to remove the frame after lengthening without even add nails : no dr would do that . In the best case you will be in cast and won't move at all and u will risk more than break bone u will risk non union because of the lack of un stability.
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Hello Zion ,
If you and android don't mind let me ( not answer your questions ) but post my opinion .
- It's not recommended at all to remove the frame without anesthesia. If u can handle the pain and be calm to remove the wires and screws from ur bone u won't handle ur skin being cut and open to remove the inner screws that dr kulesh uses to support the fibula ( check android tibia x ray ) at the end part of the bone u will find small inner screw that connects the fibula to tibia for better support (Dr kulesh is building more than required stable frame , he wants to play it safer )
- the second quesion : you want to remove the frame after lengthening without even add nails : no dr would do that . In the best case you will be in cast and won't move at all and u will risk more than break bone u will risk non union because of the lack of un stability.
So I’m guessing best bet is we be unconscious when they put the nails in and out
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Hello AR,
No problem man, if other users have the knowledge I am more than happy to know it and know other opinions.
Well I wasnt planning on removing them on my own but I did not know that, thanks!
Right, I guess I shouldnt overestimate my weak bones in such state and one functional arm (possibly)...I think it would be a blessing to be able to do one arm at a time (humerus), that alone could save so much time...dividing exactly everything for 2 instead of many...
Thanks!
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Zion,
My own personal opinion regarding doing cross lengthening and one arm . U are limiting ur mobility . You won't be able to use walkers or crutches just imagine 2 broken legs and one broken hand . You won't be able to walk. Walking and standing is very important for muscles and regaining flexibility so you are delaying your recovery for a very long time. LL requires patience and time. And always always play it safe. LL is life changing so make this change to better life not the opposite.
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Hello Android, hope all good. Just a quick one: I remember you said your goal was 12/13cm, what made you change your mind thus settling down to 10cm?
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I'm not surprised you developed a complication, externals is just not safe at all and really painful especially on your femur, internals is the way to go.. whoever wants to do externals to save money just do it on your tibias
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Hey Android, just checking in, I hope all is well now. 10 cm is a great gain and you will still look very proportional! That's a win-win situation if you ask me.
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Android My man how are you ?
If you need anything I'm here for you bro.
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his Instagram hasnt been updated since 9. september
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How much does it cost to use a Solomin doctor to do a traditional llizarov extension of the 6.5cm tibia in Russia? the full cost
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I hope you've been well, friend... It's been a while since your last instagram updates.
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Yo Android how have you been, any updates?
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dear android, thanks for your sharing and you are always so kind to help us with your knowledge.
Could I ask you a question that it is possible to start second cross after the first cross locking nail? Do you think it is possible to finish 4segment lengthning in 6months and go home for start weight baring?
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@Android, you logged in today. Why are you not updating this diary? is everything okay? ???
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@Android
What was the total price you paid for your cross lengthening. It's exactly what I want to do as well.
I want to do 5cm femurs, 5cm tibias. (And how much would you say you're spending monthly on accommodation + food
Sorry if you've mentioned the price, i'm unable to read through the paragraphs as I have dyslexia.
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@Android Hope everything is going well man.
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Hey Android..How are you doing dude?
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I hope there is no major complication..
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Hello Android May I ask how your operation recovery is going?? I’m planning to do cross lateral next year. I can’t see any further updates. Is everything ok??? I hope so. Are you posting updates elsewhere??
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Not speaking for Android, but this procedure is very demanding folks. I'm sure he's doing fine, as he is a very determined individual. It's amazing how lengthening, PT, etc, can take up your whole day and make you forget about anything else (this forum). He will update soon, I'm sure of it, but keep the thoughts and prayers coming.
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I understand. I’m feeling so anxious as I’m planning to do it next year and am still thinking that cross lateral seems too risky and may just do tibias. I always enjoy Android’s input on this forum, he comes across well. I really hope he is ok.
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Hope all is well Android, literally thinking of doing the same surgery as you in a few years, keep going and stay positive.
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Hope all is well brotha, keep strong and God Speed.
Not speaking for Android, but this procedure is very demanding folks. I'm sure he's doing fine, as he is a very determined individual. It's amazing how lengthening, PT, etc, can take up your whole day and make you forget about anything else (this forum). He will update soon, I'm sure of it, but keep the thoughts and prayers coming.
I agree 100%
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Keep strong Android,
I'm not taking android place , he is the only one who can talk about himself, but i guess he had developed some complications, we as dr kulesh patients were pushed to lengthen faster and the dr didn't recommend walking. Which will lead to soft tissues problems. I'm sure that all the complications will be solved but need time . I my self lengthend 4 cms only and I developed bad ballerina and knee bending and i was disappointed everyday because i didn't expect that bad income for small amount like 4 cms. Yes i've solved some problems but I'm still tight and didn't restore my full flexibility 5 months after
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Does the dr punishes the patients who write bad reviews?
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Keep strong Android,
I'm not taking android place , he is the only one who can talk about himself, but i guess he had developed some complications, we as dr kulesh patients were pushed to lengthen faster and the dr didn't recommend walking. Which will lead to soft tissues problems. I'm sure that all the complications will be solved but need time . I my self lengthend 4 cms only and I developed bad ballerina and knee bending and i was disappointed everyday because i didn't expect that bad income for small amount like 4 cms. Yes i've solved some problems but I'm still tight and didn't restore my full flexibility 5 months after
But did you stretch a lot? This is definitely what I notice in many diaries is the lack of stretching. Even simulating weight bearing can be done lying down, just push your feet against a flat surface. My doc was pretty vague and said to stretch a lot, but really I had to be motivated and research to find what’s best to do. Right now I am walking and weight bearing and stretching like crazy, for sure my body would be crap if I only was laying in bed lengthening.
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guys before you speculate about stretching and weightbearing, please note that the complication is caused by knee cap misalignment. This is not solved through stretching. It is serious issue and probably caused by external frame.
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Does the dr punishes the patients who write bad reviews?
I don't think so at all. Dr kulesh had proven that he cares about the patients in the first place even he can go beyond that and assist you himself so anyone will be operated with him you are in a safe hand. he is professional regarding the bone cut applying fixator and correction. what i didn't like he is not restricted regarding stretches and weight bearing. we are human that at sometimes we can feel pain and lazy so if we aren't pushed we will fall. imagine that you feel pain and tired and you find that your dr doesn't recommend walking and he buys a wheelchair for you. for sure you will develop complications.
I wasn't that lazy and that active. i was stretching and wearing the footholder for more than 12 hrs per day and i pushed myself to walk the little distance to bathroom. but i didn't walk or stood a lot. adding to that the most tightness i felt was after the correction phase which last 3 days ( I was manpulating the bones using hex bods ) 6 rods to form hexagonal around the frame and are turned according to predefined turns by a computer. so this add alot of tightness to me.
my current situation 5 month after the operation (pure external tibias - 4cms) :
- I don't have knee bending ( I used to had them for 2 month but now gone )
- I don't have ballerina while walking my heel are on the ground but i need to walk and stretch 2 to 3 mins before they touch the ground.
- I didn't restore my full dorsiflexion my foot are almost 95 degrees which make me miss so much activities like standing without aids. standing straight, going down stairs.
- I have tibial splint in my left leg because of tight frontal tibia muscle.
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Are you the fake android?
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Man oh man, this diary absolutely terrifies me. I've spoken to plenty of doctors, friends, and even read many diaries. I cannot believe that this doctor is recommending people to sit in bed and not promote physiotherapy and exercise. Walking and weight bearing promotes the bones to set in correctly. I'm trying to spend at least 2 hours training my legs, as well as upper body with weights in bed. I understand how little Russian doctors give a flying fook once the patient has paid and they aren't paying for extras, my doctor is the same. But at least my doctor said to "walk walk walk" whenever I could, and I figured it out from speaking with previous LL people to take stretching/PT seriously. It is undoubtedly painful, but every 2 days I'll get into the city and just try to walk to a coffee shop 600m away or something, even just to break the monotony of this horrible bed.
I am really hoping you can recover quickly man. Absolutely shocking about the misinformation that these guys get away with.
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be very careful with russian chicks, once she is legally in the USA she will be the same as US women :D
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What do you specifically mean when you say your foot doesn't move well? Any specific motions? General weakneas? Ans what about sensation?
Wish you the beat of luck and a speedy recovery!
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People who lengthen sometimes get foot movement problems. Sometimes it's ballerina. Sometimes it's nerve damage. The type of movement issue you have shows your problem. What type of movement issue do you have Android?
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Jim and Pope asked if the lastest "update" was real.
Nope! Don't believe it.
I'll be back, nothing personal guys. I'm just a bit lazier than you thought.
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Glad that you are back Android. Keep strong!
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Woe that's such an evil thing to do. Looking forward for a real update. Stay strong!
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dear android！ wow awesome you are just like always with us! Thanks for your message and hope your recovery well. Best regards.
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Jim and Pope asked if the lastest "update" was real.
Nope! Don't believe it.
I'll be back, nothing personal guys. I'm just a bit lazier than you thought.
So relieved to see you posting from your real profile.
Thanks for dropping by and letting us know.
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Hey Android..How is it going?
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Android... whatever has happened I believe its healthy for your mind and soul to talk about it.
Please reply and explain everything. It will be a relief to get it off. Besides, this forum is still frequented by veterans who may have suffered the same complications as you, they may provide valuable advice for recovery.
I hope to hear from you.
edit:
i just saw he updated his instagram 7 days ago.
seems like he stopped lengthening and has consolidated partially.
+ nerve damage and dropfoot
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Once again we see the exactly same pattern: previously very talkative user, is no longer willing to post even a basic update. Personally, I find it disturbing. Could any of you, dear Veterans, help us understand the mechanism behind?
-> Is it like a plain support circle: once you recover, you no longer feel the need to look back? (That would be the optimistic variant).
-> Or is it a spiral of despair: you have enough pain and fear in your everyday life to even bother posting? (I hope it is not).
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Once again we see the exactly same pattern: previously very talkative user, is no longer willing to post even a basic update. Personally, I find it disturbing. Could any of you, dear Veterans, help us understand the mechanism behind?
-> Is it like a plain support circle: once you recover, you no longer feel the need to look back? (That would be the optimistic variant).
-> Or is it a spiral of despair: you have enough pain and fear in your everyday life to even bother posting? (I hope it is not).
The forums are pretty toxic (hell, I often am too), so Android is most likely (rightfully) avoiding it while he focuses on his own life.
Remember that we pay nothing for these diaries. These are people who are using their savings, enduring horrible pain and quality of life, and still bothering to write us about their experience. Let us allow real CLL vets to handle their own diaries as they see fit.
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To Wheels:
I'll help you understand. Android or any other LLer does not owe you an update or an explanation.
Any post made by any LLer is a gift; not an obligation.
Second guess motivations at your pleasure or peril--your conclusion likely means nothing.
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To Wheels:
I'll help you understand. Android or any other LLer does not owe you an update or an explanation.
Any post made by any LLer is a gift; not an obligation.
Second guess motivations at your pleasure or peril--your conclusion likely means nothing.
I understand, however, many people who have done or are now doing this surgery relied on others’ diaries. It’s a reciprocal thing isn’t it. I will say that if someone starts a diary and then stops without saying if they are ok is quite worrying especially a worry over the person’s welfare, how is that person etc. So it causes double worry, worry about the person and worry about a possible future surgery. Many diaries have helped me so I think it’s only right I do one or at the very least say how I am if I decide to start one etc.
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However I will say that it’s possible someone doesn’t want to give too much info on here or elsewhere online when things go wrong and they are relying on their doctors to fix it and want to stay quiet until things have hopefuly resolved. This is probably quite common, where you don’t want to name doctors with things going wrong right now at risk of making the situation worse. Maybe some are worried about doctors reading these forums and/or other online platforms. So it’s understandable.
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Why external femurs?
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(...) Android or any other LLer does not owe you an update or an explanation.
Any post made by any LLer is a gift; not an obligation. (...)
This is all correct. And I'm not surprised by the fact, that some of us contribute with detailed diaries while others prefer to stay anonymous. It's very much personal, nobody owes us anything.
What truly disturbs me, is why the same person can so much change his approach before/after cll. And why it is not an exception, but rather a repetitive pattern. I only suspect, that they are experiencing life-changing events, and I would really like to know if positive ("What CLL forum?! I have my life now!") or negative ("Shame on me for even starting this process!").
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This is all correct. And I'm not surprised by the fact, that some of us contribute with detailed diaries while others prefer to stay anonymous. It's very much personal, nobody owes us anything.
What truly disturbs me, is why the same person can so much change his approach before/after cll. And why it is not an exception, but rather a repetitive pattern. I only suspect, that they are experiencing life-changing events, and I would really like to know if positive ("What CLL forum?! I have my life now!") or negative ("Shame on me for even starting this process!").
I think it’s a very long process especially when confronting complications
It’s just overwhelming and not be able to have enthusiasm to report online
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You seem to conclude that because someone was active in posting while active in the LL process; that if that same poster stops posting; then, something must be wrong.
Perhaps your conclusion is accurate in some cases but your conclusion may be inaccurate in most cases.
I found that once I began the consolidation process and begin to reintegrate with my life, I also began to lose interest in posting on this forum. This is so for multiple reasons.
The primary reason is that the bulk of feedback received as a result of posting is from others who do not seem sincere about the process yet are highly opinionated as if they know things which they clearly do not know.
Another significant group of feedback comes from posters who seem too lazy or disinterested to read an entire diary and just want "their" question answered.
Another group is the group that is experiencing challenges--some ask legitimate "did you experience this" type questions buy others want to replace interaction with their surgeon with interaction with this forum.
Because I am getting back into my life and have moved past these topics, there is little give and take, back and forth, or quid pro quo in continuing to post.
Some LLers continue to post regularly and offer opinions but it is these posters I am most leery of BECAUSE they continue to post rather than devote their time to getting back to their lives.
For me, I know this will be one of my final posts because I need to get on with my life. This does not mean I do not wish others well--I certainly do; however, my time as a resource for others is coming to its natural end. I suspect the same is true for many who actually undergo and complete the process or a discrete phase of the process.
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California2,
You seem to be a solid "positive", given the lengthen amount, your age and the total cost.
Wouldn't you mind staying around for a while, or uploading more pics or movies of your life "after"?
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I will probably post once or twice more updating my consolidation; however, I see no point for me to "hang around" this forum.
I understand others may get something from me hanging around; but, to be frank, what is in it for me?
Some LLers, just like some people who served a short time in the military, tend to draw a significant portion of their identity from those experiences. But these experiences make up only a brief portion of our lives.
It would be odd for me to hang around the forum and to keep talking about my LL experience. Naturally, I will always remember my experience but my experience is but one thread that makes the fabric of my life.
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Why don't people post on these forums? it's pretty straightforward, when you post a pic on proportions you get judged, you say something, you get judged, you give information about you're doctor, then you get blamed and also judged for promoting him. You have a good outcome, then they call it a lie. So on and so forth. These forums are the most depressing place to be. It's not motivation or any kind of insight. I am simply here to follow like three people who lengthened, nothing else. This forum is also full of fake news and fake patients and even more fake complaints. Hating on the doctors, ect. When I am not on these forums I feel better. Many here think this is f$%#ng reddit for god sakes, they relate EVERYTHING to height. Sh%t job? height, no GF? it's because of the height, no respect? it's the height. It gets extremely depressing. There are thousands of folks out there lengthening who don't post. They do the surgery and move on. And like some of the lads said on the replies, LLers don't owe anyone anything, it truly is a gift if someone posts a diary or any kind of picture. There is even this sad c#nt who made like a wikipedia page of some of the guys who previously lengthened (not just APO). Thats what happens when you give out too much pictures or information. I could go on and on because there are a thousand different reasons why Android or anyone for that matter will not post updates or even diaries.
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Does anybody have any info about Android? It doesn't look good...
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He used to be the most active member on this forum.
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What is his Instagram ?
It is strange because most Solomin diaries are good, maybe he just go over his insecurity but we really need to know if a least he is going well
There is a feeling of frustration
Also he didn’t come back from February but maybe he is just honest and too lazy, hope so
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I sent a message on Instagram maybe he will answer
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The forums are toxic, so Android probably doesn't want to deal with the mental stress of having to post here or lurking in such a place.
Just leave him be. I'm sure he'll come back with an update (or more) when he feel he is ready, whenever that may be.
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Jim and Pope asked if the lastest "update" was real.
Nope! Don't believe it.
I'll be back, nothing personal guys. I'm just a bit lazier than you thought.
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I hope so
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Yeah this forum is toxic.
It's the lack of moderation. At the same time nothing is censored so theres a plus side to it
knowing android he will be back and will be rock solid.
Hes a smart guy.
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Hes a smart guy.
Cross Lengthening with Dr. Solomin & Dr. Kulesh
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Android, any update?
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Android, any update?
Same I would like to know
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One more diary without ending which probably had a terrible outcome.
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Did you see his instagram?He has nerve damage from traction on his left leg--which had femur frame--meaning the nerves were not ruptured, but stretched too much (probably too fast).
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Did you see his instagram?He has nerve damage from traction on his left leg--which had femur frame--meaning the nerves were not ruptured, but stretched too much (probably too fast).
what is his instagram?
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Nerve damage is a very bad complication. It's permanent sometimes.
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His Instagram is:
@android_cll
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He was the most active user in the forum and most exciting about cll and suddenly he disappears. Remember leechlet.
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do you think the nerve damage is caused by the lengthening rate or by the fact that he had cross LL?
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:-[ r.i.p android. Heard he passed away
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:-[ r.i.p android. Heard he passed away
?? How do you know that?
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Why did he pass away?
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:-[ r.i.p android. Heard he passed away
Are you sure? Wtf
Related to cll or no?
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I hope and wish for the very best for him wherever he is.
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Lol.. no in fact, Android is not dead...
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he answered me on instagram
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he answered me on instagram
Well what did he say?
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Everyone..
I just talked to Android on Instagram. He said to make sure to tell everyone he's still alive ;D He's 9 months recovering now. His femurs have consolidated and he is walking without a cane/completely unassisted. He said he had very bad nerve damage which will take up to 12-18 months to recover. He also still has a brace on his foot but said his recovering is going good.
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That is definitely relieving. the nerve damage sucks, but if it's able to be overcome in the end, that's better than permanent pain by far. I'd say leave him be for a while until he's ready to post again.
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This forum is toxic, the more you read and the more you get depressed even if you didn't do LL. What's the moderators doing. Lots of liar's and some very frustrated guys as well. Recover well Android.
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Everyone..
I just talked to Android on Instagram. He said to make sure to tell everyone he's still alive ;D He's 9 months recovering now. His femurs have consolidated and he is walking without a cane/completely unassisted. He said he had very bad nerve damage which will take up to 12-18 months to recover. He also still has a brace on his foot but said his recovering is going good.
Honestly now I feel like if you can’t afford stryde for femurs don’t do them at all, precise 2 is like 10% cheaper but the benefits of stryde are way more than worth it.
Poor guys isn’t even halfway done, still has to do the other side. Might as well have just done Tibias with external and paid the extra 30-40k for stryde femurs
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To quote Mark Twain...
The reports of my death are greatly exaggerated.
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To quote Mark Twain...
The reports of my death are greatly exaggerated.
<3
I needed a smile this week.
Take your time.
Don't even feel the need to come back to this place!
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Hey Android, considering your experience so far, do you think it is safe to do full external tibia with Dr. Solomin or Dr. Kulesh to achieve 5 cm?
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To quote Mark Twain...
The reports of my death are greatly exaggerated.
Aside from nerve damage on femur, how was your tibia lengthening? Have you fully recovered and how about athletic prowess after cll
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How much has android lengthened in total?
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Legend has it that Android is still lengthening and now up to an unprecedented 30 centimeters.
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Legend has it that Android is still lengthening and now up to an unprecedented 30 centimeters.
You’re joking right? I think you are at least lol
Think he lengthening like 5-6cm tibs + femurs separately
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You’re joking right? I think you are at least lol
Think he lengthening like 5-6cm tibs + femurs separately
Totally joking. He seemed in good spirits on his Instagram. Got to admire a guy with guts. He's going for it all.
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Aside from nerve damage on femur, how was your tibia lengthening? Have you fully recovered and how about athletic prowess after cll
How much has android lengthened in total?
Hi guys
Android is having a hard time lengthening and/or recovering. Just leave him alone for a while, until he will come back with his own will. Let's pray for good luck on his journey to the CLL.
Wish you the best of luck on your journey, Android. Hope you recover well!
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Hi guys
Android is having a hard time lengthening and/or recovering. Just leave him alone for a while, until he will come back with his own will. Let's pray for good luck on his journey to the CLL.
Wish you the best of luck on your journey, Android. Hope you recover well!
Prayers sent and my good thoughts as well. We're on your side, Android. Feel free to reach out if you want to talk about anything.
Take care of yourself, buddy.
IFS
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Well, when i read he was dead, I thought: is there a special heaven for midgets? (just joking)
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Wrong thread
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Did Android die?
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Did Android die?
He is alive as of June 22 where his most recent update on Instagram shows a walking video and a long update about his progress. His Insta is @android_cll
From June 22, 2020 on his Instagram:
"I'm alive! Recap, I got my left femur and right tibia lengthened via Ilizarov. While left thigh is fine from the lengthening, the same left lower leg had foot drop due to nerve damage (no cuts or tears, it's due to traction). I have sensory and motor loss, meaning most of my lower leg and foot is numb and can't move.
It's been quite a while, but I've made progress. Plantar flexion (pointing foot down) is quite good now, I can almost lift my own weight. You can see the calf muscle now, was completely flat not long ago. I can move left and right, but no dorsiflexion (lifting foot up) yet; the foot moves, but not perfectly up.
My physical therapist is impressed with my progress, since I had little to no movement when I started. We're quite confident in the recovery process, and hope to see dorsiflexion soon. It feels like yesterday that my plantar flexion was barely visible, but it's very normal now.
Second video is a side view of me walking with the brace on. Keeps my ankle from flopping around, and of course keeps the foot at a 90 degree angle so that I don't drag my feet and trip! It's quite hard right now since it was custom made many months ago, but due to my improvements, my physical therapist is considering alterations to make it more flexible so that I can use my own muscles more.
FYI, my weekly physical therapy sessions consist of using the EMS machine (10 minutes each of three placements on left leg), stationary bike for 15 min, stretches and exercises with physical therapist, and of course..Chatting. It's important to get along with your therapist!
Last video is climbing the stairs. I don't need hand rails, though it was scary climbing while filming myself :D
Sorry about the jerky video, but my phone is on its last legs (no pun intended). Anyway, thanks for reading, and have a good (and safe) day!
P.S. - the pandemic is awful, nut now I have a pretty good excuse as to my disappearance huh? :D"
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I read almost the whole diary, unless I miss something, I understand that Android developed a complication while on the 1st stage of cross lengthening? And he did not as a consequence do the next stage?
So now he is basically having difficulties with his legs and on top of this having one leg with long femur and other with long tibia? And just hope his complication resolves so he can do the next step?
Damn, cross lengthening is much riskier than I thought.
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你还好吗
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I read almost the whole diary, unless I miss something, I understand that Android developed a complication while on the 1st stage of cross lengthening? And he did not as a consequence do the next stage?
So now he is basically having difficulties with his legs and on top of this having one leg with long femur and other with long tibia? And just hope his complication resolves so he can do the next step?
Damn, cross lengthening is much riskier than I thought.
Yeah, I'd never do cross lengthening. From what I read, there's just too much that can go wrong--even with an amazing doctor like Dr. Solomin. I'll just suck it up and do bilaterial tibias, then I'll get internal femurs after I'm fully recovered and lifting the same weight (or more) than I could pre-op.
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He is alive as of June 22 where his most recent update on Instagram shows a walking video and a long update about his progress. His Insta is @android_cll
From June 22, 2020 on his Instagram:
"I'm alive! Recap, I got my left femur and right tibia lengthened via Ilizarov. While left thigh is fine from the lengthening, the same left lower leg had foot drop due to nerve damage (no cuts or tears, it's due to traction). I have sensory and motor loss, meaning most of my lower leg and foot is numb and can't move.
It's been quite a while, but I've made progress. Plantar flexion (pointing foot down) is quite good now, I can almost lift my own weight. You can see the calf muscle now, was completely flat not long ago. I can move left and right, but no dorsiflexion (lifting foot up) yet; the foot moves, but not perfectly up.
My physical therapist is impressed with my progress, since I had little to no movement when I started. We're quite confident in the recovery process, and hope to see dorsiflexion soon. It feels like yesterday that my plantar flexion was barely visible, but it's very normal now.
Second video is a side view of me walking with the brace on. Keeps my ankle from flopping around, and of course keeps the foot at a 90 degree angle so that I don't drag my feet and trip! It's quite hard right now since it was custom made many months ago, but due to my improvements, my physical therapist is considering alterations to make it more flexible so that I can use my own muscles more.
FYI, my weekly physical therapy sessions consist of using the EMS machine (10 minutes each of three placements on left leg), stationary bike for 15 min, stretches and exercises with physical therapist, and of course..Chatting. It's important to get along with your therapist!
Last video is climbing the stairs. I don't need hand rails, though it was scary climbing while filming myself :D
Sorry about the jerky video, but my phone is on its last legs (no pun intended). Anyway, thanks for reading, and have a good (and safe) day!
P.S. - the pandemic is awful, nut now I have a pretty good excuse as to my disappearance huh? :D"
are there any updates on android's condition?
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If you have recent imaging data please put it at this thread. Redact any information that could be used to dox you.