Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: Pope on June 16, 2018, 02:04:09 PM
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About Me
Leg lengthening has been something I’ve considered for years (Which is the case for most people). I was actually arranged to have this surgery done last year. I had already purchased my plane ticket, gotten my visa, paid for an (non-refundable) apartment through Airbnb and even scheduled my surgery date but unfortunately, I backed out last minute. In some ways it was actually a good decision for me to wait a year later because I learned so much since the
. Honestly, even now, I’m learning more as I actually undergo leg lengthening.
A little about myself, I’m a 22 year old male from US and I just recently graduated college in May (Had to make sure I was able to walk at graduation lol). So of course I rewarded myself by breaking my legs a couple weeks later. I co-own a landscaping company which is how I can afford to go to school and pay for this surgery. I do well on my own but I think it’s quite obvious that my company doesn’t do well enough that I can go to Paley. I still have graduate school to become a physical therapist but I’ll be taking a gap year to (obviously) undergo cosmetic leg lengthening. I’m 165 - 166 centimeters (5’5) short but have worn uncomfortable 2 inch lifts since high school. My wingspan is conservatively 170cm. I’m very athletic and my reason for this surgery is because I’m insecure about my height. I have no issues with women at all, I know I haven’t lived out that many years, but I’ve always been in some type of relationship for the most part. So for readers who are considering leg lengthening solely for women, I would recommend improving yourself in other ways first before concluding to leg lengthening.
Wearing lifts was my way of coping with my insecurity. Being at roughly 5’7 - 5’8 with lifts on was good enough for me. However, there’s so many instances where lifts would be a huge inconvenience. Such as taking really long walks for an entire day or having to reveal my true height when shoes have to come off in places such as the beach. And it doesn’t help that I live 5 minutes away from the shore lol. I have several other personal reasons but everyone has their own reasons to why they want or believe that they need this surgery. Whether a persons reasons are justifiable to undergo this surgery or not is so subjective that it’s such an abstract topic that I’d rather avoid.
Traveling Tips to St. Petersburg
Luckily, traveling and visiting foreign countries is something I’m already familiar with. Not many Russians in my experience speak English so you will definitely need a translator, have an offline application on your phone if you don’t plan on getting a SIM card.
The prepaid phone services are so cheap and having a working phone is extremely helpful that I’d recommend just getting it. Don’t forget that your phone needs to be unlocked. The phone service I use here is Beeline and I pay 650 Rubles per month (~$11USD) for 32GB. There’s other plans with minutes and SMS but those were useless to me.
The phone plan I use:
https://imgur.com/a/V3g8QWk
Examples of other phone plans:
https://imgur.com/a/yiStm0T
If you’re not from Europe, make sure you bring a universal power adapter, this is the one I’m currently using:
https://www.amazon.com/dp/B075JFPC42/ref=cm_sw_r_cp_api_IFljBbX9SRRBW
Here is the website where I got my 3 year multiple entry visa. You’re only allowed to stay for 6 months max in one visit with this visa. It cost me roughly $500. It was very easy and took about a month for them to send back my passport with my visa:
http://www.russia-travel.com
When you get to Russia, you have 7 business days to register your visa. If you stay at a hotel or the hospital, they’ll do this for you. But if you stay at an apartment where the owner may not be willing to register you at the post office or police station, like in my situation, you can go to this hotel that offers registration services (They charge 1500 Rubles for one month which is about $25 USD):
Piterskaya Hotel
Address: Liteinyi lane, 63
Phone: +7 (911) 266-3268/ +7 (951) 673-8980
E-mail: reg@v-piter.com
One of the reasons why having a phone with internet was so useful was that I could use Uber. You set your pick-up location and destination and you’re done! No communication issues in trying to explain where you want to go. The Uber rides here were very cheap, here’s a few rides I took (Uber doesn’t save the distance or duration of the ride):
-Ride from apartment to St George hospital, one of the hospitals Dr. Kulesh works at (~$3 USD):
https://imgur.com/a/ZBDIJYQ
-Apartment to St Elizabeth municipal clinic where I am currently staying and had my surgery (~$3 USD):
https://imgur.com/a/9Y0ciWW
-Apartment to Piterskaya Hotel where I registered my visa (~$5 USD):
https://imgur.com/a/BJPnqnh
Getting money over here is also a bit difficult. What I did was have one of my friends send me my money through Western Union. But it’s not that simple, the first time we tried, Western Union took my money and we received a tracking number that said pending, which was strange because the site said it would be ready to pick up within minutes and they already have my money. It was just stuck like this for the entire day and we just gave up that day cause they kept my friend on hold for half an hour:
https://imgur.com/a/gmVAo6W
We make another call the next day and turns out we have to call Western Union first so they can verify the transfer which was so odd because they took my money before telling me this. They said they do this because there’s a lot of fraud, especially in Russia. They were making sure that the person my friend was sending the money to (me), was actually me. So if you are going to use Western Union to receive money, call this number before you attempt to transfer money (This number is for US customers):
1-800-325-6000
Consultation with Dr. Kulesh & Dr. Solomin
I had my initial consultation at Vreden institute. Dr. Nikita, one of Dr. Kulesh’s assistants first took my X-Rays here:
https://imgur.com/a/Fg2pNF7
Afterwards, I met with Dr. Kulesh who accessed my x-rays and biomechanics with this program on his computer. He explained the surgery to me and whether or not LON or LATN was even possible. He measured my bone lengths, measured my medullary cavity, measured all these angles regarding my biomechanics and then adjusted my X-Rays to see how my biomechanics would be if I added 7cm on my femur. A couple minutes later, Dr. Solomin comes in. We discuss what I wanted to do and how much I want to lengthen. They were suggesting against doing both femurs at the same time but I insisted. They definitely aren’t here just to make money. They answered all my questions, and gave me a few days to make a decision. They weren’t trying to push me to do the surgery at all. They gave me the details I needed to know and left me to decide for myself. If anything, they actually had me thinking twice if I actually wanted to go through this. Dr. Solomin seemed shocked when I said 7cm on the femurs and said that it was a lot. They suggest up to 10% of the original bone length. But that going over 20% would be way too much. The length of my femurs (measured by the x-rays) were 43cm, so by numbers a 7cm increase for me would be between 16%-17%.
Each person is different and these numbers are just based off of previous cases. One patient may do well lengthening 20% while another patient might have have trouble even doing 10%. I prefer not to look at us like were machines or computers because everyone will have a different experience, especially with this surgery. My goal is to lengthen 7cm but I plan to stop distraction as soon as my body tells me to.
At the end of this consultation, I chose to go with external lengthening or lengthening and then nailing. I still have not decided which of the two. I won’t have to decide until after lengthening. But I personally preferred LATN over LON because with LATN, you can get better alignment during the correction period, the nail will be longer and more stable, and complications are generally easier to fix without the nail in the bone.
The Surgery
I arrived at the St. Elizabeth municipal hospital and was immediately taken to my room. It was the day before my surgery and I had an electrocardiogram and several blood tests done. My anesthesiologist came in the afternoon and explained to me how she was going to put me under general anesthesia and how I had to curl into a ball for her to see my spine. She then said I had to stop eating and drinking at 10:00pm and left.
Here are some pictures of the room:
https://imgur.com/a/yJI3sXA
https://imgur.com/a/IbzyTTe
https://imgur.com/a/oIHcmM2
The next day, I shave my legs for the first time and wait on my sofa thinking about the worse that could happen. I was mainly concerned with going under a coma because of the general anesthesia. This would be my first surgery ever. I know I was being over dramatic but I was extremely nervous.
The nurses came at around 9am, told me to undress, and had me lay down on a stretcher then covered me with a blanket. I can still remember being wheeled into the operating room. From my bedroom, going down the hall, up the elevator. I was really comfy wrapped in the blanket, just enjoying the ride and at that point my mind was somewhere else. My mind was blank, I wasn’t scared, I wasn’t nervous. I accepted reality.
In the operating room, there were- if I recall correctly, three connected rooms in which surgeons can operate in. In between each room was a window. To my left I saw a woman who was completely still. To my right there was a man, I couldn’t see him completely through the window, but people were going in and out of that operating room so I assumed his room was being prepped for surgery as well. There were about 5 nurses around me preparing the room, hooking me up to things. Every few minutes the blood pressure monitor would go on, that was really the only thing that was uncomfortable for me so far. I was still just laying there relaxed, probably for around half an hour. Soon, I saw Dr. Kulesh, Dr. Solomin, Dr. Nikita, and Dr. Roma walk in. I was so glad to see familiar faces, not long after though, my anesthesiologist put me under and the last thing I saw was having the catheter put inside me. This was actually one of my bigger fears but at that last second before I was out, the drugs had already kicked in and I didn’t feel a thing.
The next thing I know, I was awake with frames on my femurs in the operating room. I woke up smiling, I was just happy I was alive lol. Getting wheeled back to my room was a completely different feeling than getting wheeled to the operating room. I was excited and really looking forward to gaining the height. I looked forward to when I no longer had to wear my lifts or worry about taking my shoes off at the beach.
Test of Patience
I felt no pain after the surgery, but of course that’s because I’m still on anesthesia. I was hooked on to this machine for about 5 days which would administer the anesthesia at the rate the anesthesiologist sets it to. Every time it would run out, the pain would get worse over time. The pain at its worst was maybe an 8/10, but that only happened for about an hour or two because my anesthesiologist was busy that day and the nurses aren’t allowed to dispense it. For the most part however, the pain was sitting at 1/10.
Here’s the machine that was administering the anesthesia:
https://imgur.com/a/d5TsBh7
Sleeping straight through the night was (and still is) a bit difficult because I would wake up extremely uncomfortable and would have to reposition my legs. It’s not so much because of pain but the discomfort. After I got off the anesthesia, the pain stayed at a 1/10. At night, it wouldn’t go anywhere above 4/10.
Here are my frames:
https://imgur.com/a/h2jjEQa
Here’s the upper part of the frames:
https://imgur.com/a/SARqfFc
My catheter was removed around the same time. I was glad that there was finally nothing sticking inside me. I graduated from the catheter to peeing in a plastic container. Dropping a deuce was a different story though. I knew I wasn’t going to use that damn bed pan. The nurses said I had to if I couldn’t get to the bathroom so I did everything in my power to learn how to walk (using my walker). It was difficult to walk at first, but eventually I got the hang of it. I’ve been wearing the frames for about a month now and it’s still hard to walk but I’m happy as long as I don’t have to take a on my bed.
I think the hardest part of this is just sitting around all day and doing nothing. I wake up, eat, stretch all day, turn the nuts on my rods, sleep, and then do it all over again. I watch movies and/or shows but I have to use my phone’s internet since there’s no WiFi here at the municipal clinic. It’s no big deal for me though since it’s so cheap but- just a heads up for anyone who planned on WiFi being available to you here.
The food isn’t all that enjoyable either. I email Dr. Kulesh things I want/need from the store and he has one of his assistants buy the food/items for me. The meals at the hospital usually has some kind of potato in it (Potato soup, mashed potatoes, chopped potato, etc). Then there’s also other types of soup, oatmeal-like breakfasts, sometimes rice, and then the famous macaroni and hot dog dinners. Most meals come with bread and you get breakfast (9:30AM), lunch (2:30PM), and dinner (6:30PM). Haha, I’ve been here for way too long.
https://imgur.com/a/BF8lrRi
https://imgur.com/a/H9CdH1T
https://imgur.com/a/Atq2bpO
Just to give you an idea on cost of food (If you stay at an apartment you can actually use this site to have them deliver you your groceries):
https://www.okeydostavka.ru/spb2
There’s a lot of time to fill while you’re here. So make sure you have something that will keep you occupied. I really wanted to stay productive while I was here, so I’m studying to take my test to become ACSM certified in exercise physiology. I dreaded the first few days I was here. But now days just go by really fast, I feel like my concept of time has really changed. Being stuck here makes you appreciate simple things that you wouldn’t have thought of before. Like simply walking outside to get fresh air or being able to have decent conversations with someone. It gets lonely sometimes because Dr. Kulesh and Dr. Solomin are really the only people that visit who know enough English to actually have a conversation with.
Distraction & Schedule
I started distracting on May 25, exactly a week after I got the initial surgery. I distracted 1mm per day for 20 days and today is my third day lengthening 1.5mm per day. So at the end of today, I would have lengthened 24.5mm (2.45cm) on paper. Ever since I got off the anesthesia about 5 days after the surgery I haven’t had the need to take any painkillers, so I’m hoping it stays that way.
X-Rays 9 Days After Distraction:
https://imgur.com/a/YdNlzqO
X-Rays 20 Days After Distraction:
https://imgur.com/a/CtojCLL
After initial surgery, I was getting shots under my skin every night near my stomach, I was told it was blood thinners. After about a week, I went from that to taking Pradaxa once a day.
I get bandages changed 3 times a week, X-Rays about every 10 days and have physical training 1-2 times a week with a trainer. I stretch all day (every day) and train on my own when I’m not with the trainer.
Price
These are prices most relevant to me right now. You can contact Dr. Kulesh if you want a much more detailed document regarding prices. It’s extremely detailed and has everything you need to know on it when it comes to money.
Dr. Kulesh’s e-mail is: kulesh_pavel@mail.ru
As I mentioned earlier, my 3 year multiple entry visa (6 months stay max in one trip) cost roughly $500 USD
One way plane ticket cost about $350 USD
Consultation plus X-Rays with long films: 6.000 Rubles (~$95 USD)
To install frames: 166.000 Rubles (~$2630 USD)
Price for a single room per day at the municipal clinic: 4.400 Rubles (~$70 USD)
Each bandage change by doctor: 1.500 Rubles (~$24 USD)
Each 30 minute session with the trainer: 1.500 Rubles (~$24 USD)
X-Rays with 4-short films: 3.000 Rubles (~$48 USD)
Installation, calculation, and removal of reduction modules for corrections: 27.000 Rubles (~$430 USD)
If I decide to go the LATN route, removal of the frames and installation of Russian nails cost: 126.000 Rubles (~$2000 USD)
A Little Taste of St. Petersburg
https://imgur.com/a/rbkNGEM
https://imgur.com/a/Gt3d5n0
https://imgur.com/a/l1kZFRw
https://imgur.com/a/O9PM3Uv
Anyway, this is my experience so far. I’ll do my best to keep my diary updated and try to respond to everyone, please don’t take it personally if I don’t get to you.
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lol i got quoted at 25k for very similar but I had wanted to stay at the private clinic and housing for 150-200 days. Yours is extremely cheap and I don't know why.
I'll also mention that this was extremely detailed and well done and I wish you the best of luck seems you're in good hands. This is a great example of how ideally detailed each log should be so far.
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Very detailed, good luck. So what amount of money you recommend to save if you want to do the surgery in Russia?
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lol i got quoted at 25k for very similar but I had wanted to stay at the private clinic and housing for 150-200 days. Yours is extremely cheap and I don't know why.
I'll also mention that this was extremely detailed and well done and I wish you the best of luck seems you're in good hands. This is a great example of how ideally detailed each log should be so far.
Well the surgeries are a lot more expensive at the private clinic. Everything is more expensive there including rebandaging, IM nails, physiotherapy, etc. For example, the initial surgery to install frames are 299.400 Rubles in the private clinic and 166.000 Rubles in the municipal. Swiss IM nails cost 274.000 Rubles in private and 129.000 in municipal. To stay at the private, it’s 11.340 Rubles per day for a single room and 4.400 at the municipal. These are just a few examples but it all adds up.
Very detailed, good luck. So what amount of money you recommend to save if you want to do the surgery in Russia?
If you’re going to stay at the hospital for as long as I am then getting the nail installed after lengthening, and while also taking possible complications into consideration, I would say $15K USD minimum. Im not saying you’ll have to spend all this money but you’ll definitely need more if you’re staying in the private clinic and/or staying in the hospital even longer for externals (consolidation phase). Also I want to bring up the possible things you’ll have to pay for when you get back home such as x-rays, nail removals, physiotherapy, etc. Things most people don’t consider after they’ve gained their height.
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Wow, thanks for the detailed diary and all the pictures. I really wish you the best during your LL. External femurs are so difficult based on all the diaries I've read.
Solomin is very experienced and I'm hoping it will show during your stay in Russia.
They answered all my questions, and gave me a few days to make a decision. They weren’t trying to push me to do the surgery at all. They gave me the details I needed to know and left me to decide for myself. If anything, they actually had me thinking twice if I actually wanted to go through this. Dr. Solomin seemed shocked when I said 7cm on the femurs and said that it was a lot. They suggest up to 10% of the original bone length. But that going over 20% would be way too much. The length of my femurs (measured by the x-rays) were 43cm, so by numbers a 7cm increase for me would be between 16%-17%.
Thanks for sharing that. I already knew that was supposed to be their protocol (recommendation of only a 10% increase over initial bone length), but it's good to hear it happened in private too. They could just claim it online to look like the ones who want to risk the least for their patients, while the actual practice was different.
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They were suggesting against doing both femurs at the same time but I insisted.
It's good this happened too. Did they give you a good picture of how difficult bilateral, external femurs are?
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Wow, thanks for the detailed diary and all the pictures. I really wish you the best during your LL. External femurs are so difficult based on all the diaries I've read.
Solomin is very experienced and I'm hoping it will show during your stay in Russia.
Thanks for sharing that. I already knew that was supposed to be their protocol (recommendation of only a 10% increase over initial bone length), but it's good to hear it happened in private too. They could just claim it online to look like the ones who want to risk the least for their patients, while the actual practice was different.
I really appreciate it, thank you! I was well aware on how difficult bilateral external femurs would be even before Dr. Kulesh and Dr. Solomin warned me. I feel that it’s more a psychological endeavor than it is a physical. And this LL route is definitely not for everyone. I like to think that I have a lot more psychological endurance and willpower than most people. Based off the other bilateral external femur patients Dr Kulesh has told me about, I feel like I’ve been doing a lot better than all of them. But in addition to that I also want to consider myself lucky that I’ve had no complications so far.
Trying not to be bias, I feel that Dr. Kulesh and and Dr. Solomin are competent surgeons. My opinion comes from my experience so far and I’m not here to promote them because I’d rather have each person determine how capable these doctors are on their own. I’m just here to tell my story and for everyone else to form their own opinions. But I was also glad that they not only suggested the 10% limit on their file, but in the consultation as well. I felt that they were so much more realistic unlike some of the consultations I’ve read about in other diaries where doctors say “Oh 7cm? Yeah, of course that’s easy.”
It's good this happened too. Did they give you a good picture of how difficult bilateral, external femurs are?
Yes, they showed me a picture of one of their patients from last year wearing these bulky frames to give me an idea. They also explained to me a few things he struggled with such as walking and doing things for himself. Since I kept insisting other alternatives such as doing one leg at a time, Dr. Kulesh recommended I stay at the hospital for the entire period of lengthening. I’m still not sure if I’ll be staying here the entire time because I actually already paid for an Airbnb for two months with Jim_dabarber. (He’s coming to have the second part of cross lengthening done). I can already walk with a walker (with difficulty) but I definitely won’t leave the hospital until I’m 100% sure I can handle being on my own.
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Thanks for sharing such a detailed diary. I have been waiting for you diary since 17t May ;) I thought you will not visit here until you finish lengthening period. I am happy that everything has been successful so far.
As I said before, I am also thinking about external femur, but my main fear is fat embolism rather than discomfort. And I think your frames look a little bit compact compared to Jim"s femur frame. Maybe they are the same I am not sure.
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Thanks for sharing such a detailed diary. I have been waiting for you diary since 17t May ;) I thought you will not wisit here until you finish lengthening period. I am happy that everything has been successful so far.
As I said before, I am also thinking about external femur, but my main fear is fat embolism rather than discomfort. And I think your frames look a little bit compact compared to Jim"s femur frame. Maybe they are the same I am not sure.
I actually almost chose not to write a diary at all. But I’d be happy if anyone could take anything from my experience. I don’t want to be the guy saying everything will be fine, everything will go well. I’m optimistic but I can’t even say that for sure in my case until I’ve recovered to the point I’d like to be at. Fat embolism is definitely something to consider especially with bilateral femur lengthening. I believe my doctors are skilled and I feel safe under their care but the truth is that complications can occur no matter how good your surgeon is. You probably won’t die but complications definitely will make your experience much worse.
The ring I’m wearing is supposedly the largest size but maybe you’re comparing my frames to when Jim had his reduction modules for correction installed. Those make the frames look huge! Luckily those only need to stay on for about a week.
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The first couple weeks how did you get around with both femurs operated on? What was your strategy and how did you do it?
You're right about the private clinic being much more expensive and I also had 20 days there listed which is alot. I also was doing 3 surgeries with LATN opposed to 2 (Not sure if that factors in)
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Yes, you are right. I looked at Jim's diary again, it was hexapod installed ring. Jim told me that you were on blood thinner in order to reduce fat embolism risk. But once it happens, it can lead to death as far as I know.
Are u currently alone there? I mean Is there anyone ( (relative or friend) there helping you to do daily staffs?
You are really a courageous person, having 2 bulky frames around femur should be something that affects negatively your mental health. But it is the case that happens when someone can't afford internal lengthening method and want to save time by not doing unilateral lengthening.
In terms of staying in hospital, if you stay there during whole lengthening process, it will cost you around 6000$ which is the way more expensive than the surgery itself. how would you describe your situation if you choose to lengthen your each femur separately? Would you still stay in the hospital for a month?
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I'm glad you decided to share your journey with us. We're all lucky to have detailed diaries with pictures.
I hope we can contribute back in some way, have you ever have a time of need, like when wanting opinions on x-rays/other CLL aspects, or if feeling down.
And this LL route is definitely not for everyone. I like to think that I have a lot more psychological endurance and willpower than most people.
Great to hear it. Your health will obviously take a hit, but I hope it endures and stays as good as your mental fortitude!
Nice to hear you've been in contact with Jim, too.
I really appreciate it, thank you! I was well aware on how difficult bilateral external femurs would be even before Dr. Kulesh and Dr. Solomin warned me.
Good! That makes me more relieved. You are aware of the risks, and will probably deal better with any obstacle.
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The first couple weeks how did you get around with both femurs operated on? What was your strategy and how did you do it?
You're right about the private clinic being much more expensive and I also had 20 days there listed which is alot. I also was doing 3 surgeries with LATN opposed to 2 (Not sure if that factors in)
The first day after my operation I was bed ridden and still had the catheter on. I didn’t really have a reason to get out of bed and I wasn’t sure if I could get up anyway. I was only able to sit up and move myself around different parts of the bed. I could barely move my legs at the time, they felt really heavy, so I had to move my legs with my hands to move around on the bed. Once my physical trainer came in with my walker, I quickly taught myself to use it and walk to the bathroom. It’s easier (for obvious reasons) for me to move my legs perpendicular to the ground than parallel when I’m on the bed. To get off the bed I need to bring down my legs one at a time. I would then spread my legs apart so the frames won’t hit each other or the walker as I walk. I mentally prepare myself cause there’s no going back once you’re up. You quickly get tired so there’s no time to think, you just have to keep going. After I decide I’m ready, I pick myself up with both hands on the walker (I have a lot of upper body strength so this might not be as easy for everyone) then very slowly walk towards the bathroom door. The annoying part is that once I get to the door, I have to turn around, walk backwards slowly so that I can mount my ass on the toilet and use the walker to help bring myself down.
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Yes, you are right. I looked at Jim's diary again, it was hexapod installed ring. Jim told me that you were on blood thinner in order to reduce fat embolism risk. But once it happens, it can lead to death as far as I know.
Are u currently alone there? I mean Is there anyone ( (relative or friend) there helping you to do daily staffs?
You are really a courageous person, having 2 bulky frames around femur should be something that affects negatively your mental health. But it is the case that happens when someone can't afford internal lengthening method and want to save time by not doing unilateral lengthening.
In terms of staying in hospital, if you stay there during whole lengthening process, it will cost you around 6000$ which is the way more expensive than the surgery itself. how would you describe your situation if you choose to lengthen your each femur separately? Would you still stay in the hospital for a month?
I’m alone here and only told one person just so they could send me my money through Western Union. I’m at the hospital so the staff here can help me do daily things such as serve me my food, unnecessarily clean my room everyday, empty my pee container, etc. To be honest, my mental health is fine. I’m not depressed or regret anything thus far but I am EXTREMELY BORED lol. As I’ve stated before, this surgery isn’t for everyone but I truly felt this was something I personally could endure.
Yes, staying at the hospital this long even at the municipal clinic definitely adds up but I was financially prepared if I had to do it this way. Lengthening each femur seperately would definitely be many times easier, if you have at least one fully functioning leg while lengthening the other. I’d be 100% sure that I’d be out of the hospital on my own if this was the case. But I have obligations back home so I wouldn’t be able to be gone long enough to lengthen each femur seperately. You can actually lengthen one femur, get the nail in, go home, and come back again to do the other. But the idea of having a discrepancy for that long really bothered me. One alternative Dr. Kulesh suggested doing one leg at a time was:
1st surgery - external fixation for 1st femur
lengthening, correction of the 1st femur
2nd surgery - nailing of 1st femur, external fixation of 2nd femur
lengthening, correction of the 2nd femur
3rd surgery - nailing of 2nd femur
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I'm glad you decided to share your journey with us. We're all lucky to have detailed diaries with pictures.
I hope we can contribute back in some way, have you ever have a time of need, like when wanting opinions on x-rays/other CLL aspects, or if feeling down.
Great to hear it. Your health will obviously take a hit, but I hope it endures and stays as good as your mental fortitude!
Nice to hear you've been in contact with Jim, too.
Good! That makes me more relieved. You are aware of the risks, and will probably deal better with any obstacle.
Yeah, I definitely saw that it could be beneficial for me to see other people’s opinions on my x-rays and experiences! I know there’s a lot I could learn from people on this forum, especially the veterans.
I’ve definitely lost weight since I got here but I’m motivated to sustain as much as I can and recover what I’ve lost as efficiently as I can. I don’t want to rush anything, I’m just trusting the process :)
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Thanks for starting this thread, Pope. Clear, concise, and good photos to boot. Looking forward to more, best of luck!
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The bright side is that your lengthening and finishing time will be much shorter lived than if you did unilateral. However do you think consolidation and time walking would have been faster with unilateral as by the time you pinned your second leg the second one would have already been about consolidated?
Sorry I have alot of questions in my head for you and as I spent months talking back and forth through email to both of the doctors in Russia and almost pulled the trigger at one point.
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Thanks for starting this thread, Pope. Clear, concise, and good photos to boot. Looking forward to more, best of luck!
Thank you :)
The bright side is that your lengthening and finishing time will be much shorter lived than if you did unilateral. However do you think consolidation and time walking would have been faster with unilateral as by the time you pinned your second leg the second one would have already been about consolidated?
Sorry I have alot of questions in my head for you and as I spent months talking back and forth through email to both of the doctors in Russia and almost pulled the trigger at one point.
I can’t answer that with complete confidence but theoretically it should be quicker to consolidate one bone at a time, I’m not sure by how much though. Everyone is different and regenerates bone at different speeds as well. One thing I’m sure about however, is that working on the recovery of one leg at a time would be much easier. But we should also consider that after nailing your first leg, and getting the frames on the 2nd leg, you technically have two broken bones that you’re regenerating, so no, your 1st leg most likely will not have consolidated by the time you install the frame on the 2nd leg. If it was already consolidated, why even bother going through the trauma of nailing? Specifically addressing your question whether bilateral or unilateral will be quicker to get you back to walking on two feet, I’m not really sure- there’s so many components to consider and possible complications, whether major or minor, that it would be difficult for even a competent doctor to answer. At the end of the day though, it’s obvious that unilateral lengthening is a much safer route to go.
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So the price for external is basically 2630 USD. Can someone tell me why it's even 5x cheaper than Parihar?
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So the price for external is basically 2630 USD. Can someone tell me why it's even 5x cheaper than Parihar?
That’s just the first surgery. It also costs money to do corrections (About 27.000 Rubles). And then you need to have the frames removed (About 70.000 Rubles in the municipal clinic). I also recall that Dr. Parihar offers a package so I believe there’s other things that come with his price. I’m sure even then, it’s still cheaper here. Though, I want to point out that the price is also a lot more when the procedure is done at a private clinic. I’m not sure whether or not doctors will get paid more if they operate there. And although I can’t answer your question, I could give my best opinion based off what I’ve observed. So in Russia, doctors make much less compared to other countries. I haven’t asked my doctors how much they make because thats rude but I’ve had a nurse openly tell me that he only makes about $400 a month and my physical therapist who only makes about $500-$600 a month. This is just to give an idea on how much people here make. I’ve also read that people, on average, make $500 a month here. Another thing I’ve observed was that everything is much cheaper- cost of living like food, transportation, hotels, etc. In the center of the city here I could get a good meal for $5. At the center of NYC it would cost $20+ for a meal equivalent to what I can get in St. Petersburg for $5. I want to again restate that this is just my guess- but I believe it’s a combination of the government, unclear tax guidelines, and the low cost of living.
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Wow, i am surprised that you haven't told anything about your surgery to your family members) if you have enough money, I would suggest you to stay in the hospital during the whole lengthening period
Dr kulesh told me to do first femur with latn method, and second femur with LON method. In this case, I will be under anesthesia 3 times.
I’m alone here and only told one person just so they could send me my money through Western Union. I’m at the hospital so the staff here can help me do daily things such as serve me my food, unnecessarily clean my room everyday, empty my pee container, etc. To be honest, my mental health is fine. I’m not depressed or regret anything thus far but I am EXTREMELY BORED lol. As I’ve stated before, this surgery isn’t for everyone but I truly felt this was something I personally could endure.
Yes, staying at the hospital this long even at the municipal clinic definitely adds up but I was financially prepared if I had to do it this way. Lengthening each femur seperately would definitely be many times easier, if you have at least one fully functioning leg while lengthening the other. I’d be 100% sure that I’d be out of the hospital on my own if this was the case. But I have obligations back home so I wouldn’t be able to be gone long enough to lengthen each femur seperately. You can actually lengthen one femur, get the nail in, go home, and come back again to do the other. But the idea of having a discrepancy for that long really bothered me. One alternative Dr. Kulesh suggested doing one leg at a time was:
1st surgery - external fixation for 1st femur
lengthening, correction of the 1st femur
2nd surgery - nailing of 1st femur, external fixation of 2nd femur
lengthening, correction of the 2nd femur
3rd surgery - nailing of 2nd femur
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Wow, i am surprised that you haven't told anything about your surgery to your family members) if you have enough money, I would suggest you to stay in the hospital during the whole lengthening period
Dr kulesh told me to do first femur with latn method, and second femur with LON method. In this case, I will be under anesthesia 3 times.
Yeah I’m really close to my family and friends but after I’ve recovered, this isn’t something I ever want to come up again. Im sure they would respect my wishes not to talk about it but I know that the fact I went through LL will be in the back of their minds. I’m going to update my diary up until I’ve recovered to my liking. But after that point, I don’t ever want to think about LL again or visit this forum lol. Maybe like an update several years later but who knows.
I’m glad you’re lengthening one femur at a time! You’ll definitely have it much easier than doing bilateral and I’ve said it many times - but doing one leg at a time is so much safer in terms of complications. I wish you the best in your journey! Will you be staying is St. Petersburg during the distraction phase or do you plan on going home?
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Yes, sometimes, it is better to stay away from this forum bcs of some negative comments. And if I were you, I wouldn't tell anything about this surgery to my family members after recovery. Sometimes, it is better to keep this type of surgery as a secret. I wish i didn't tell about this surgery to my family members and was able to afford it without family support . But at my age, It seems impossible for me
Actually when I was a child, i stayed in the hospital for 7 days and therefore, I know how it is difficult to stay in the hospital for more than a week. That's why,I want to go back to my country after 15 th days of the surgery. And unfortunately, i have limited time, I take a gap from University for a year. So, unilateral femur lengthening can be a little bit time consuming. I will make my final decision when I have consultation with Dr Kulesh. Maybe, i will choose tibia lengthening
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That’s just the first surgery. It also costs money to do corrections (About 27.000 Rubles). And then you need to have the frames removed (About 70.000 Rubles in the municipal clinic). I also recall that Dr. Parihar offers a package so I believe there’s other things that come with his price. I’m sure even then, it’s still cheaper here. Though, I want to point out that the price is also a lot more when the procedure is done at a private clinic. I’m not sure whether or not doctors will get paid more if they operate there. And although I can’t answer your question, I could give my best opinion based off what I’ve observed. So in Russia, doctors make much less compared to other countries. I haven’t asked my doctors how much they make because thats rude but I’ve had a nurse openly tell me that he only makes about $400 a month and my physical therapist who only makes about $500-$600 a month. This is just to give an idea on how much people here make. I’ve also read that people, on average, make $500 a month here. Another thing I’ve observed was that everything is much cheaper- cost of living like food, transportation, hotels, etc. In the center of the city here I could get a good meal for $5. At the center of NYC it would cost $20+ for a meal equivalent to what I can get in St. Petersburg for $5. I want to again restate that this is just my guess- but I believe it’s a combination of the government, unclear tax guidelines, and the low cost of living.
If I just do external tibia, then I'd only need to pay the installation of the frame and the removal later since it should only be 1 surgery?
That's ridiculously cheap man! How long did you feel you were in coma? From what I've heard, it could be so quick that you wouldn't even realize the sugery has been performed.
Also, can I ask you, in your opinion, which one would be the best option for external tibia, Solomin/Parihar/Giotikas/Mahboubian/Rozbuch?
Thanks so much!
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If I just do external tibia, then I'd only need to pay the installation of the frame and the removal later since it should only be 1 surgery?
That's ridiculously cheap man! How long did you feel you were in coma? From what I've heard, it could be so quick that you wouldn't even realize the sugery has been performed.
Also, can I ask you, in your opinion, which one would be the best option for external tibia, Solomin/Parihar/Giotikas/Mahboubian/Rozbuch?
Thanks so much!
You should also calculae the costs of correction period and otherexpenses like staying in hospital, x-ray,rebandage change and etc. Actually, surgery itself seems cheap but bear in mind that it is just the cost of surgery, extra costs are the things that make it a little bit expensive. Anyway, it still will be cheaper than Parihar, Rozbuch, Catagni and etc
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You should also calculae the costs of correction period and otherexpenses like staying in hospital, x-ray,rebandage change and etc. Actually, surgery itself seems cheap but bear in mind that it is just the cost of surgery, extra costs are the things that make it a little bit expensive. Anyway, it still will be cheaper than Parihar, Rozbuch, Catagni and etc
For example, the surgery cost of Catagni alone is over 20k. Of course that doesn't include accomodation, food, etc. The surgery price is practically 10 times more expensive than Solomin. I feel like I am missing something here.
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I didn't mean especially dr Catagni. For example, as far as I know Dr Parihar offers special package. Or in other places like Turkey, x-ray, pre-operative tests, medicine, 5 days stay in hospital include the price. But as I said before, it still will be cheaper in Russia if you choose pure ilizarov or LON. If you choose Latn, price will be higher accordingly. You can get price list from Dr kulesh. There are various examples to calculate your costs and detailed information about what they offer
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Anyone going to St Petersburg let me know. Im lookin for people so we can share accomodation.
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Training Knee Flexion ROM
https://imgur.com/a/U6rFQGi
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Thanks for the picture
Does it hurt too much when you try to bend your legs?
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.
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Thanks for the picture
Does it hurt too much when you try to bend your legs?
I wouldn’t describe it as the feeling of pain, it’s more of a feeling of stiffness. But after stretching, and doing some assisted knee flexions and knee extensions, the stiffness goes away.
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If I just do external tibia, then I'd only need to pay the installation of the frame and the removal later since it should only be 1 surgery?
That's ridiculously cheap man! How long did you feel you were in coma? From what I've heard, it could be so quick that you wouldn't even realize the sugery has been performed.
Also, can I ask you, in your opinion, which one would be the best option for external tibia, Solomin/Parihar/Giotikas/Mahboubian/Rozbuch?
Thanks so much!
The big things are initial surgery, corrections, and removal. But as Tiger9898 said, you should also consider things such as accommodations, trainings, additional X-Rays, etc.
Yeah going into a medically induced coma is kind of funny to describe. It’s like it never happened, lol. You fall asleep and the next thing you know, you’re awake. Like time didn’t even pass by.
I couldn’t say which doctor is the best. I only really looked into Dr. Parihar and Dr. Solomin, but I would feel safe under either of their care.
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Any news, pope?
So whats the total cost for all surgeries, correction, nail removal, xray after the procedure as you mention, clinics, visa etc.?
How long will it takes til you can get nails off?
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Thank you for your detailed and informative posts.
I will be in St. Petersburg in September and will essentially repeat your process except that I will stay in an apartment for distraction. (And, the specific lengthening process and/or segments is not yet decided.)
I noticed you transferred funds via Western Union. Did Dr. Kulesh accept US Dollars or does Western Union convert dollars to rubles, or something else?
If Western Union does convert, do you know the conversion rate off the prime conversion rate? I ask because most banks seem to charge 8-10% off the prime rate.
If Dr. Kulesh accepts US Dollars; then, I'll just take cash.
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I noticed you transferred funds via Western Union. Did Dr. Kulesh accept US Dollars or does Western Union convert dollars to rubles, or something else?
I'll chime in here. He does not take USD, Western Union will convert to rubles for you. You can check the fees for yourself on their site/app, it varies depending on how fast you need it. You can also send him money via bank wire or exchange USD to rubles once you arrive in Russia; avoid the airport exchange shops and head to Sberbank.
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Thanks!
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Pope, how many days after the surgery could you weight bear and how much.
Thanks and good luck.
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I'm Not Dead!
I apologize that I didn't update my diary as things were occurring in my LL journey. Soon after my first post, things started becoming many times more difficult. I've experienced a lot of pain and suffering- with a long way to go but here I am, still alive!
Beginning of the LL Nightmare
I first began lengthening at a rate of 1mm per day. After about one week, I began distracting 1.5mm per day. When I reached 3cm, I took an x-ray which showed that I was at risk for pre-consolidation. Dr. Kulesh told me he suspected that he will have to bring up my distraction rate to 2.5mm per day. I was so shocked and never heard of anyone lengthen so fast. I asked if he was going to see what Dr. Solomin thought since I was so skeptical about his opinion. He responded that he would discuss it with Dr. Solomin that day to make sure he wasn't crazy. I was still nervous but at least even he realized that what he was asking me to do was out of the ordinary. Later that night I received an e-mail confirming that both Dr. Kulesh and Dr. Solomin agreed that I should begin lengthening at a rate of 2.5mm per day. I knew I wasn't going to have it easy anymore.
These were the xrays: https://imgur.com/a/mhc2I1P (Album)
(https://i.imgur.com/1jeX6qr.jpg)
(https://i.imgur.com/ZJVsjpT.jpg)
(https://i.imgur.com/dHXa5IC.jpg)
(https://i.imgur.com/EGbrhdJ.jpg)
Pain & More Pain
It was extremely painful and uncomfortable. All I had was what was basically ibuprofen and these shots I forgot the name of that would be given through your butt. Both stopped helping me after 2-3 days. The weather was also getting hotter. With the pain and heat combined, the discomfort was at a whole different level. After a week of distracting 2.5mm per day, I wasn't able to endure lengthening so fast any longer and Dr. Kulesh allowed me to lower my distraction rate at 2mm per day until I finished lengthening and began the correction phase. I honestly wasn't able to tell the difference between 2.5mm and 2mm, the pain still felt just as bad. I officially stopped lengthening at 6.2cm and I thought that the pain would finally slowly go away. I thought wrong. After the hexapods were installed on my frames to begin corrections, I was even more uncomfortable. To make my situation worse, I was unable to do corrections on my own so Dr. Kulesh's assistants would have to turn for me. Typically you would turn throughout the day, but since I couldn't do them myself, Dr. Kulesh had to have my entire turning schedule done all at once each day. I don't know how I endured all that pain and discomfort. I guess it was because I had no choice but to get through it.
Here are x-rays and pictures of my frames during corrections: https://imgur.com/a/TkaerrB (Album)
(https://i.imgur.com/3dDUv37.jpg)
(https://i.imgur.com/CI1Pc4t.jpg)
(https://i.imgur.com/te1XFVB.jpg)
(https://i.imgur.com/jdTk5pW.jpg)
(https://i.imgur.com/No7i1I6.jpg)
(https://i.imgur.com/3QYND39.mp4)
Nailing
Finally! It was time to remove the frames. I was told I would be the first in the operation room. They wheeled me out early in the morning and I sat on the stretcher outside of the room I'd be having surgery in. I was so early that I didn't see any of my doctors until an hour later. At that point I lost so much weight that my back and ass was bony so it wasn't comfortable laying on that stiff stretcher. They didn't start my surgery until two hours later and I was moaning in pain waiting. I just kept telling myself that the frames were coming off that day so I just had to bear the pain until then.
After all the waiting, it was time to put the epidural in my spine. This was a huge challenge having two frames on my femurs since they kept me stuck laying on my back. It took four people to lift me sideways and put in the spinal epidural. I probably don't need to say this was extremely uncomfortable. Everything I experienced was uncomfortable; some was just more uncomfortable than others... Several minutes after I saw Dr. Kulesh and Dr. Solomin come in, I knocked out.
My experience this surgery was a bit different than my last. In my initial surgery, I was able to remember the very last thing I saw before knocking out. Also, when I woke up last surgery, I was woken up in the operation room and remember being wheeled back to my hospital room. This time, I don't remember exactly when I knocked out and when I woke up, I was already in my room, extremely weak, and in a pool of blood. However, its the most comfortable I ever felt in the last few months since I was still on the anesthesia.
About three days later, I got my spinal epidural removed. I didn't want anything sticking inside my body, so I also asked the nurse to remove my catheter later that night. I was peeing blood the first couple of times after I had the catheter removed. It was also extremely painful to pee for several days but the pain progressively went down. I really can't get a break from this journey...
Here are some pictures and xrays after nailing: https://imgur.com/a/4PzNptS (Album)
(https://i.imgur.com/DULYrYG.jpg)
(https://i.imgur.com/z2uyh8v.jpg)
(https://i.imgur.com/QyQJ07Z.jpg)
(https://i.imgur.com/puMBvzv.jpg)
(https://i.imgur.com/BZ3eSrq.jpg)
(https://i.imgur.com/UAVlLo7.jpg)
Going Home!
10 days after nailing, I took an Uber Black to a really nice hotel. It was my first taste of luxury in months! The Uber Black driver picked me up in a nice Mercedes and LITERALLY picked me up and put me in the car since the nails weren't weight bearing. He was extremely professional and helped me a lot. I stayed at the hotel for two nights and was able to order and eat anything and everything I wanted! I had AC and felt like I was in heaven compared to being at St Elizabeth's.
I took another Uber Black to the airport who also helped me by literally picking me up from my wheelchair to get in and out of the car. After checking in, flying home was almost effortless. Uncomfortable but effortless since I got pushed to everywhere I needed to go. I was also first on every plane so I could get settled before everyone started coming in. I bought seats that was one class below first class to get extra leg room since my ROM was still fairly bad. Flying home with my broken femurs actually felt easier than when I was flying to Russia.
Comments
•I planned on spending $13k USD but ended up spending roughly $18k USD; still spending money on PT, x-rays, etc. at home.
•Everything looks good, I got xrays, blood work, ultra sounds at my hospital in America - just working on ROM, leg strength, and nerve pain at the moment.
•Still not fully weight bearing; I'm waiting to take my next x-rays and hope I can weight bear by then.
•I've actually been home for a few weeks but I'll update my situation at home another time.
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Pope, how many days after the surgery could you weight bear and how much.
Thanks and good luck.
You can weight bear immediately right after the first surgery. Dr. Kulesh believes the frames can bear roughly 80kg.
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Great updates pope! Youre a real trooper for doing 6 cm with those frames.
I just dont get why the nails are not full weight bearing? I looked at you xray and it looks like you dont have proximal locking screws on top of you nail. Im not sure but it looks like it. Can you use walker?
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Great updates pope! Youre a real trooper for doing 6 cm with those frames.
I just dont get why the nails are not full weight bearing? I looked at you xray and it looks like you dont have proximal locking screws on top of you nail. Im not sure but it looks like it. Can you use walker?
Thanks :) Here are additional x-rays to show the proximal screws. Dr. Kulesh doesnt recommend I walk around with a walker yet according to my last x-rays on July 27. I will probably be able to by next x-rays.
(https://i.imgur.com/AA8FQDk.jpg)
(https://i.imgur.com/vzZ1LfY.jpg)
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Hey man,
How is walking? :D
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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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Update
- My left foot still has drop foot
- I started walking on crutches around September
- Can confidently walk without crutches early October
- I haven’t tested how long I can go without crutches but I can definitely say that I can walk at least 30 minutes straight (slowly).
- I’ve been able to easily go up and down stairs for a month now
- Gait needs improvement (I will post a video soon)
- Range of motion for right knee flexion is about 110-120 degrees
- Range of motion for left knee flexion is about 90 degrees
- I stopped stretching for now to let my nerves heal (especially my left because of foot drop)
- I still bring my crutches around with me cause Dr Kulesh recommended I shouldn’t even be walking yet. I would probably be fine without them but I’m just cautious.
-My next X-Rays are next week and I’ll share those
Pictures of Surgical Scars
(https://i.imgur.com/XHBTwDa.jpg)
(https://i.imgur.com/CZLuFLr.jpg)
(https://i.imgur.com/GMeYQRP.jpg)
(https://i.imgur.com/IuiOmh0.jpg)
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Man, I am almost in the same position as you in August. I'm getting my first x-rays tomorrow and I'm extremely worried now. I'm doing Tibias in Baku, Azerbaijan but the doctors are Russian and everything you've mentioned is exactly the same.
Is there any way that the complications could have been prevented? Possibly doing more walking/stretching/Physiotherapy? It looks like the bones were not aligned correctly, were the turns done unevenly? So curious, would love to hear your opinion.
Do they align tibias the same way? It sounds terrifying.
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Man, I am almost in the same position as you in August. I'm getting my first x-rays tomorrow and I'm extremely worried now. I'm doing Tibias in Baku, Azerbaijan but the doctors are Russian and everything you've mentioned is exactly the same.
Is there any way that the complications could have been prevented? Possibly doing more walking/stretching/Physiotherapy? It looks like the bones were not aligned correctly, were the turns done unevenly? So curious, would love to hear your opinion.
Do they align tibias the same way? It sounds terrifying.
From what I’ve learned the past 4 months after nailing, the drop foot complication was from over stretching my peroneal nerve. Dr. Solomin insisted that I had 60 degrees of knee flexion before nailing. I was able to get my right leg to about 60 degrees which is probably why that one doesn’t have foot drop. And my left leg was only at about 30 degrees at the time. So yes, I would say that I could have prevented this if I stretched more seriously.
My femurs were pretty misaligned but they were corrected. My right leg (which is doing much better than my left) actually needed more correcting done. The doctors thought my right leg would have more nerve problems because of that. But this wasn’t the case cause as I’ve said I think the problem was from over stretching my nerve on my left leg to insert the nail in my femur.
I don’t know if this would be the same case for someone doing tibias, but my point is, stretching is super important!
They do align tibias the same way. I actually used the hexapod struts shortygirl used to align her tibias right after she finished using them.
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You overstretched your peroneal nerve? Is this from lengthening too fast?
Can you recommend stretches that would be beneficial? I'm really taking the stretches seriously now, mostly doing leg raises (sitting and lying down) and lying on my stomach and bringing my leg back, no idea what this is called.
Also walking and doing stairs...
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Hi Pope!
Great recovery! How is the pain? Are you using any medication or is post nailing pretty painless?
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You overstretched your peroneal nerve? Is this from lengthening too fast?
Can you recommend stretches that would be beneficial? I'm really taking the stretches seriously now, mostly doing leg raises (sitting and lying down) and lying on my stomach and bringing my leg back, no idea what this is called.
Also walking and doing stairs...
Yeah I did but I think that it only happens to LATN femur patients that don't have enough knee ROM to get the nail in. I know two other members here with the same issues and they both had the nerve problems undergoing lengthening and then nailing on their femur. You should focus more on preventing ballerina foot since you're lengthening your tibias.
Hi Pope!
Great recovery! How is the pain? Are you using any medication or is post nailing pretty painless?
Thanks Arch! The pain was pretty bad for a month after nailing. Mainly nerve pain but it goes down over time. I'm only taking 600mg of Gabapentin per day for the nerve pain now and I'm nearly painless. I heard you went through with bilateral femur lengthening. That's a brave move, man! I hope everything is going well for you.
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UPDATE
Drop foot is going away fast! I can dorsiflex my foot half its normal range of motion now and it's getting better every day. My neurologist and orthopedic doctor is shocked by how much I've improved. They said they thought I was hopeless when I first came to get checked out lol. But they did admit they weren't sure of what they were looking at.
I completely got rid of my crutches after I saw my x-rays yesterday. Lots of good things happening recently. Its been 5-6 months since my first surgery and I've experienced a lot of hell- for anyone out there suffering, just be patient, things get so much better. I'm absolutely loving my new height. Anyway, walking video coming soon but for now here are my x-rays from yesterday:
(https://i.imgur.com/BFGkpFw.png)
(https://i.imgur.com/JuIowx7.png)
(https://i.imgur.com/r9XTzLe.png)
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great progress buddy ! Did you try to measure you new height? ALso do you know more or less how much everything cost you?
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great undate！happy to hear your great recovery, thanks you. Hope you walk unaided soon.
Could I ask that Did you get any never damage for the high speed lengthening?