Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: BilateralDamage on January 09, 2014, 05:35:52 AM
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Hope you like the title ;D
I've decided to make this diary to glean information from others as I go through my journey, and hopefully help guide you to one day starting your very own diary! This is an area for me to deposit my thoughts and see myself progress, and I completely encourage you to do the same if you haven't already. Who cares if you don't have a doctor or date planned yet or even any money, your story of why you're doing LL is important too. We all want to hear what each other has to say.
Who are you?
I'm BilateralDamage, but call me BD. I'm from the US, 21 years old, weighing 140 lbs and my height is 167 cm. I have a wingspan of 176 cm, a sitting height of 86 cm and a very athletic fit body (but I haven't tried doing any backflips yet- looking at you Sweden :P). I used to think I was doomed to be a short man for the rest of my longevity on this earth and fell into a heavy depression. I've had people call me names without provoking them, my so-called "friends" make me feel less of a human being because of my height, people not take me seriously in business, social, fitness, family life, and eventually outcasted from social circles because of my attitude in life after my depression. But would you know it, as soon as I found out that LL existed, I had a slight skip in my step the very next day. I'm becoming friendlier and happier and a lot more people started accepting me into their social circles.
I remember seeing the movie Gattaca and hearing rumors that the lengthening Jude Law's character did in the movie was actually physically possible, but only for very short amounts, and I never bothered to read up on LL after that point. I also thought something like that looked disturbing and never imagined myself even considering it. My girlfriend stumbled across the documentary Apotheosis had with 20/20 and she showed it to me in a joking manner, not realizing how seriously I would take it. Thanks for something Apo/SysOp!
Who is my doctor?
I haven't fully decided that yet. I am very strongly leaning towards Doctor Birkholtz (South African doctor who I have not seen any diaries for yet!) I discuss why in the video I'm embedding below. I'm not that great of a podcaster/speaker yet (I think this video is boring) but I promise to get to leechlet's level soon. :) Just need more practice, it feels weird talking to myself. I also have a great camera and will take some neat footage wherever I end up doing LL.
If you don't care to watch the video, I'll break down why I'm leaning towards Dr. Birkholtz into 3 bullet points.
- Pricing
- Honesty and Character
- Knowledge
The three things that really separate most surgeries, huh?
Dr. Birkholtz offers PRECICE lengthening at a cheaper rate than most doctors I've seen. Most of the prices I've witnessed so far are considerably higher than his 54,000 USD cost for surgery, hospital stay, accommodation for 4 weeks, physio, food, etc. On top of pricing, as I go into in the video, Dr. Birkholtz is an incredibly upfront and honest man and he has my full confidence that I'd be in good hands. You don't have to look far to see this, in his thread on this forums, he posted even discouraging some people from doing CLL. It's not a safe procedure and any doctor encouraging it is most likely a greedy hack. In regards to knowledge, the man teaches doctors from around the world at a prestigious hospital in South Africa on LL. If you just take a glance at http://www.limblengtheningforum.com/index.php?topic=137.0 where he answers many of our questions, you can tell he really knows what he's talking about.
He is not my final choice, and I still want as much input as possible from everyone to help me ultimately decide who I want to do my internal femoral lengthening with. I chose the PRECICE because it seems to have faired better than other nails, I can afford to be in a wheelchair for extended periods of time, I'm not interested in bending or breaking my nail, and I'm also not interested in paying upwards of 80K-100K out of my pocket for this surgery.
http://www.youtube.com/watch?v=LeS9KdCQ-wE
When will I do the surgery?
May 2014, no matter what. I'm graduating and finishing my studies completely in May 2014, and will be heading straight into surgery to get this over with. I wanted to do this over my current winter break between last semester and next semester, but unfortunately, 1 1/2 months wasn't enough time!
What are you doing to prepare for your surgery?
I admit, I need to do more research in this department. My honest opinion is that pre-OP doesn't matter much to the overall success of the surgery but I'm still going to do my research. I'm going to pick and choose through each diary what seems to work and what doesn't, and then collect it all in an excel spreadsheet in this next week so I have the entire next 5 months to adhere to some regimen.
How much will you lengthen?
Max, 6.5 cm. I don't plan on exceeding this point, for healing, safety, and time purposes. I may do a second surgery on my tibiae for 6 cm of lengthening later down the road.
Second surgery?
I want to be an of average height male in the U.S. so I'm planning on lengthening my tibiae after my femurs heal up. But who knows, maybe at that point I'll be so satisfied with my height that I won't need to do a second surgery. That's years down the road!
Closing remarks?
Stay fresh.
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Hi BD,
Appreciate the thread along with your post, both the typed info and your video. It's valuable to read and hear your thoughts a few months before the procedure. Will be interesting to see how you develop as your surgery starts following through to your bone consolidation and road to recovery afterward. Your statements of how being short has affected your life brought me back to my own experiences, and it made me realize even further how many of us here can relate to each other and can therefore support each other as we go on this lengthening journey.
Have to say I'm also excited to see who you ultimately choose to do your surgery with, especially if you end up choosing Dr. Birkholtz. I messaged Dameon and gave him Dr. Birkholtz's information that was posted on the site later - I found him by typing into Google "leg lengthening Africa" - and was a bit disappointed in the initial reaction toward his addition to the doctor directory on the site because of his practice location. As we saw on the forums, Dr. Birkholtz appears to be an ethical and knowledgeable doctor and I hope it shows when you're under his care, should you decide on him. There's an article online showing that he performed the first ever lengthening in Africa, so he's a pioneer.
I'll be doing the opposite of you, with external tibias first and then internal femurs. My visa is in the middle of being processed right now and I'm already getting butterflies in my stomach just from the nerves. Will be lengthening the end of this month or beginning of February if all goes according to plan.
Looking forward to your updates.
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Awesome. The first video diary I'm watching. You can turn this into a real video documentary later on (just an idea).
Your experience will influence which doctor I choose later in 2014 for femur also.
What made you decide to do femur first over tibia? Tibia has cheaper options and there are more variety of doctors for tibias
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Thanks guys. And thank you Kilokhan for finding us Dr. Birkholtz' existence! I don't think I would have ever bothered to search up "african limb lengthening" tbh.
Why I'm doing femurs first and not tibias are broken down into two points:
Femurs tend to heal faster than tibias, and while I'll be confined to a wheelchair for probably about 3 months, I should be able to have my tibias lengthened within a year after my surgery. I don't think it would be as possible for me to lengthen my tibias 6 cm within a year and be fit enough to jump straight into my femoral lengthening.
In terms of proportions, as a matter of personal preference, I'd prefer to have unnaturally longer femurs than unnaturally longer tibiae for the period between my two surgeries. My femurs are already longer than my tibiae, yes, but they're in a 1.11:1 ratio and having the femurs lengthened 6.5 cm would put them in a 1.286:1 ratio. Conversely, if I were to lengthen my tibiae, I would notice them to be longer than my femurs and have a much more unnatural ratio. Also, in my opinion, longer skinny tibiae are not too aesthetically pleasing, but obviously this view changes from person to person.
My lengths currently (rough estimates using a tape measure)
Femurs: 40.9375 cm
Tibiae: 36.875 cm
X-ray of my legs pre-surgery:
(http://i.imgur.com/MfCsGcwl.jpg)
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Exciting start of a diary, in so many ways! Looking forward to it, good luck!
Just curious, what's the height of your girlfriend?
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I loved your video (=speech)!!!
It is not boring at all.
And you spoke very well and impressively, you and Leechlet are on the same level there...
I'm always so amazed when I listen to you guys who are like 21 ore 22 years old and I almost cannot believe it. I feel like I was such a child at that age and you guys definitely seem to be more grown up than me!!!
And here I am , turning 46 in march... Crazy...
Somehow I think I will never ever grow up, no matter which age.
Sometimes I think this is good and sometimes I think it is sad...
Anyway, good luck with your journey, impressive start!
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I totally agree with OBG, you seem so mature.
Im older than you but i dont seem to grow in all sens ah ah -)
Very interesting diary 8).
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old forum PartyLeaks,
Cheers! I responded to your PM about this a few weeks ago. Did you see that message? For some reason, it won't show up in my Sent Box...
My girlfriend is around 5'1" - 5'2" (155 cm) and I think our heights mesh perfectly together. I'd still prefer to be taller because I want her to be able to wear heels without me feeling short.
OBG,
Thank you! :) That means a lot coming from you, your writing style sounds very experienced and mature to me. Btw, that video you posted in your diary today was badass.
Claude,
Thanks. 8)
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I'm going to be posting an entry soon on advice Birkholtz has given me in regards to where I should cut my femurs (metaphyseal vs. diaphyseal regions) and where the nail should be inserted from (antegrade vs. retrograde).
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Hi BD,
I plan on traveling to South Africa for holiday and to visit a friend there this "summer". (Summer for us, but winter for South Africans, lol). I guess Dr. Birkholtz is in Pretoria? Because that's probably where I'll visit. I'll make sure to pay you a visit as well if you choose to undergo LL there.
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Hi BD how long a minimum time gap are you planning to leave in between your twos surgeries, if you were to get two? Why do you believe pre-op preparation is not that important ? I am 19 now but I will also be getting my surgeries when I graduate and turn 22 and have the same starting height as you.:D
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BD, haha, sorry, I completely forgot about that message.. Yes, I received it :)
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good luck. I will be watching this diary as I am planning on doing LL with precice in future too.
It doesnt really matter if its precice 1 or 2 as I dont think i'll go over 6.5 cm in femur
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Chris,
That would be awesome to see you. And you'll be towering over me then. :D
View,
A minimum time gap (recommended by 3 separate doctors) was 1 year. It's pretty amazing to me to imagine I can have the whole process of two different surgeries and lengthenings done within 2 years!
I haven't seen enough results from people who have done excessive amounts of stretching and leg muscle building to see its value IMO. I'd love to be proven wrong with studies etc. so that way I know what to do beforehand. But otherwise, to me it seems like the only doctor to take pre-op seriously is Dr. Guichet. Regardless, I've already started stretching and doing squats at the gym now. It's better to be safe than sorry!
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I made a couple of videos today, one at the gym and one with me talking about how Dr. Birkholtz wants to insert the PRECICE nail and why he wants to insert it this way. The gym video is of me leg pressing and was made to show how much I can leg press pre-surgery (also it's shot on my iPhone, promise future vids will be high quality on my DSLR camera). Having before and afters with video proof should be a great way to track progress!
http://www.youtube.com/watch?v=_vYA5eqQXIM
http://www.youtube.com/watch?v=Um1IiIb7ow4
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I made a couple of videos today, one at the gym and one with me talking about how Dr. Birkholtz wants to insert the PRECICE nail and why he wants to insert it this way. The gym video is of me leg pressing and was made to show how much I can leg press pre-surgery (also it's shot on my iPhone, promise future vids will be high quality on my DSLR camera). Having before and afters with video proof should be a great way to track progress!
Thanks for sharing the video.
I'm impressed by the detail examination that your doc gone through with you... unlike my Indian who only gave me a 2 seconds examination and then surgery date. That makes me wonder how much time did he put into my life-changing surgery.
And btw, you definitely needs to focus on the stretching, like touching your finger with your toes, buttock stretch and quadriceps stretch. I heard countless cases of duck leg with femur lengthening and ballerina with tibiae. Keep updating!
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Hi Big D
Just to clarify is it one year between the surgeries or stopping lengthening that the 3 doctors recommended ?
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Thanks for sharing the video.
I'm impressed by the detail examination that your doc gone through with you... unlike my Indian who only gave me a 2 seconds examination and then surgery date. That makes me wonder how much time did he put into my life-changing surgery.
And btw, you definitely needs to focus on the stretching, like touching your finger with your toes, buttock stretch and quadriceps stretch. I heard countless cases of duck leg with femur lengthening and ballerina with tibiae. Keep updating!
I don't think I could ever go to India for LL for reasons like this... it's just too much of a risk to put your lives in the hands of someone who might not truly care about anything besides money!
Hi Big D
Just to clarify is it one year between the surgeries or stopping lengthening that the 3 doctors recommended ?
1 year between the surgeries. The 3 doctors expected my bones to be fully consolidated by this point, and able to handle the second procedure as well as removal of the PRECICE nail.
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Hey BD, I was wondering if you would be kind enough to post pictures of CLL patients who have had surgery with Dr. B? He mentioned hat he used truelok external frames for LON.
Thanks!
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I haven't any pictures of Dr. B's patients but I'll reach out to him to see if he can share any. I found an interesting vlog by somebody who had bowleg reconstruction surgery using ex-fixers. Search "Franz Birkholtz" on YouTube.
http://www.youtube.com/watch?v=x5cYgHiQDN0
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I haven't any pictures of Dr. B's patients but I'll reach out to him to see if he can share any. I found an interesting vlog by somebody who had bowleg reconstruction surgery using ex-fixers. Search "Franz Birkholtz" on YouTube.
Nice. Dr. Birkholtz is an angel. That's why he will be my 2nd option for femur LL later this year! Thanks for the video!
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Hey BD I read that doctor birkholtz had a height limit of 165cm. Did he mention to you if this was
set in stone. For example would he operate on someone who was 171cm.
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Yeah. Want to know that too, if there's limit
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To my knowledge, he has said that he has a 5' 5" cut-off point, but this was when he was strictly against cosmetic leg lengthening. I'm 5' 5.75" and he's still accepting me for surgery, so my suggestion is just to send him an email and see what he says. I think he's warming up more to CLL, so there shouldn't be many worries unless you're like 5' 10". :P
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I kind of thought that would be the case. Thanks.
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Hey bd,
Just received email from dr. Frank office. He is very reasonable compare to any doctor for precise. I am also planning on May. I am thinking among dr.lee , dr. Jamal or dr.frank b.
Please let me know if you make up your mind. I am from US and have own business. We share similar stories but I am much older.
Best!
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Hey bd,
Just received email from dr. Frank office. He is very reasonable compare to any doctor for precise. I am also planning on May. I am thinking among dr.lee , dr. Jamal or dr.frank b.
Please let me know if you make up your mind. I am from US and have own business. We share similar stories but I am much older.
Best!
PM sent :)
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How much is Dr Birkholtz price?
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$52k including accommodation for post op 75 days. Complications treatment is extra. This is the best price on planet earth for precise.
The big question is who wants to the first one to take a plunge???? Any warriors :)))
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Bilateral D is doing it in May although the doctor is not confirmed yet. Probably with Dr Frank.
$52k including accommodation for post op 75 days. Complications treatment is extra. This is the best price on planet earth for precise.
The big question is who wants to the first one to take a plunge???? Any warriors :)))
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$52k including accommodation for post op 75 days. Complications treatment is extra. This is the best price on planet earth for precise.
The big question is who wants to the first one to take a plunge???? Any warriors :)))
That seems like an excellent price. I wonder how much LON or LATN would cost? Perhaps 35-40K with similar accommodations?
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After deep research on the net I found Dr. Travis J. Kemp MD (Ortho) who practices in Boise, Idahao was trained under Dr. Franz Birkholtz.
Dr. Franz is definitely leading doctors in external, what you guys think? Check out Dr. Kemp bio: http://kempmd.squarespace.com/dr-kemp/
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I've been doing my own research and this guy, Dr Franz is solid (I've never heard of him prior to Big D's post). His specialty is not only limb lengthening but also limb reconstruction which is a real tough subspecialty.
His hospital, Netcare Unitas, which is the largest private hospital in South Africa, has awards of excellence because of his work in external fixation and limb reconstruction.
Also, South African medical schools, their graduates, and their specialists are very much recognized in the Western World.
As for safety, the media portrays a high crime/murder rate in South Africa especially sensationalized after the Pistorius (Blade Runner) tragedy. But this has to be absorbed in a context (http://www.larktours.com/truth-about-crime-south-africa). Brazil has high crime rate, Syria has civil war. Will I go to Brazil for tourism? Yes. But never to Syria. As a backpacker, I have to know what places that are off limits for me in another country (and sometimes, these places are off limits to the locals too). I have met Americans in backpacking trail who say they are more likely to be killed in their neighborhood than in the country we're traveling.
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Wherever you choose Big D, I will be following your diary very keenly, and will wish you all the best!
After deep research on the net I found Dr. Travis J. Kemp MD (Ortho) who practices in Boise, Idahao was trained under Dr. Franz Birkholtz.
Dr. Franz is definitely leading doctors in external, what you guys think? Check out Dr. Kemp bio: http://kempmd.squarespace.com/dr-kemp/
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Thanks guys for all your support!
Choosing my doctor has not been an easy decision. I've been grappling with many different doctors these past few weeks, weighing all the benefits and costs of each one and the different nails they use. I can technically afford any doctor, but this makes the deciding process so much more difficult.
- Birkholtz - His knowledge, ethics, and precaution is everything you need in a good LL doctor. He also offers PRECICE (with accommodations) at the most competitive price I've seen.
- Guichet - His patients can ride a bike the day after surgery, how can you compete with that?! This doctor is also at the top of my list for this reason, I would like to be able to work on my gait from the first day of lengthening, which is something the PRECICE does not allow for.
- Lee - Offers PRECICE and obviously has a lot of experience with CLL (even has a YouTube channel showing off his patients). I'll have to see what his updated prices at Severance Hospital are.
- Jamal - Looks to have a very personal connection with his patients and his prices are very low. Though, I've decided against going with him because he just doesn't have enough positive results.
- Paley - His results speak for himself, though his prices are very high. He's also located in the U.S. which is a bonus for me.
Coming to this decision is difficult, we're not talking about a new play-thing or a car, we're talking about the sake of my legs. Right now, I've narrowed it down to Birkholtz and Guichet. I'm afraid I might not meet Dr. Guichet's pre-requisites of training (and I'm not interested in training at the Isokinetic center before my surgery) so that may rule him out right off the bat. We'll see when he responds to my email.
Dr. Paley is a good choice as well, but Dr. Birkholtz appeals to me more with his own personality and cautionary attitude. I've grouped them together because they both offer the same nail. For this reason, I don't think Paley is the most viable option for me.
The PRECICE 2 has been having troubles in some threads on old forum and this has really turned me off to it. I don't want an additional surgery due to pre-consolidation (and for 2 people to have this problem is quite concerning). I understand speeding up the rate of consolidation is the way to counteract this problem, so hopefully Dr. Birkholtz will be keeping a very close eye on our rate of consolidation through x-rays.
God damn, I haven't even had LL yet but I'm grinding my teeth already!
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(and for 2 people to have this problem is quite concerning).
Amatan and who is the other?
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Amatan and who is the other?
Wolverine on old forum . It's interesting to note that they're both under Lee's care in South Korea.
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Wolverine on old forum . It's interesting to note that they're both under Lee's care in South Korea.
I see. Fortunately for them Dr.Lees surgery price covers complications.
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He said he has consolidated already and for surgery. 2nd surgery is over?
My old forum access is down again.
Amatan and who is the other?
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Are you going for 6.5cm under Dr Franz?
Thanks guys for all your support!
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He said he has consolidated already and for surgery. 2nd surgery is over?
My old forum access is down again.
since you dont have access.
quote from wolverine
Ok, I just spoke with Dr. Lee and am sad to say there maybe a problem with the Precice 2. The results of my last x-ray showed my right leg had only lengthened 3 mm and the left 0. Dr. Lee has instructed me to speed up lengthening to 10 times each day and has prescribed an oral steroid for me to take twice a day to keep the bones from consolidating. It's fair to say I'm very upset about the news. The only thing I can think of is that there must be some sort of defect or mechanical problem with the Precice 2. Dr. Lee's assistant checked the x-ray and has remarked my femurs which were off by a few centimeters so maybe that will help but they say it doesn't really make that much difference . There are 3 patients here that are using the Precice 2. Two of which are doing femurs and 1 tibia patient. Of the 2 femur patients both are having almost the exact same problems. I feel like there's really not much I can do now except lengthen and wait for the inevitable result of my bones consolidating or having to go through another surgery. Dr. Lee said he's treated about 30 patients with the Precice nail and none experienced any of the problems we are with the nail lengthening. Yet the Precice 1 and the Precice 2 are suppose to have the exact same mechanics. So what could the problem be? As of now things are definitely not looking well for me at all. There's really nothing else to say
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Thanks kusop but I meant Amatan who's scheduled for 2nd surgery due to consolidation and unequal lengthening.
I've asked Dr Franz about this Precice 2 discrepancy on his (Dr Franz) thread.
I asked the question, with Amatan and Wolverine in mind.
It's interesting what's the response of Dr Donghoon Lee from this development?
since you dont have access.
quote from wolverine
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Thanks kusop but I meant Amatan who's scheduled for 2nd surgery due to consolidation and unequal lengthening.
I've asked Dr Franz about this Precice 2 discrepancy on his (Dr Franz) thread.
I asked the question, with Amanan and Wolverine in mind.
It's interesting what's the response of Dr Donghoon Lee from this development?
oh.. amatans had his surgery to rebreak the osteonomy site. He also wrote that his leg is now lengthening again but hes knee has swollen and its severely numb to the point he's afraid he wont walk again. He regretted LL.
I believe he is just freaking out or having some kind of mood swing.
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F**k a duck! Hope he recovers well.
When a bone has prematurely consolidated, is this mostly the fault of the doctor for not monitoring properly or it's just each patient's uniqueness (unforeseen)?
oh.. amatans had his surgery to rebreak the osteonomy site. He also wrote that his leg is now lengthening again but hes knee has swollen and its severely numb to the point he's afraid he wont walk again. He regretted LL.
I believe he is just freaking out or having some kind of mood swing.
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F**k a duck! Hope he recovers well.
When a bone has prematurely consolidated, is this mostly the fault of the doctor for not monitoring properly or it's just each patient's uniqueness (unforeseen)?
I think its both.
In this case Dr.Lee actually spotted upcoming premature consolidation and told him to distract faster. Maybe he should have seen in earlier with more frequent x-rays.
I am sure I read somewhere that the reason girls usually have higher success ration than men in LL is because of their lack of muscle mass in the tigh. Having flexible muslces are good for LL, but having packed too much muscles will cause greater force against distraction meaning internal patients have harder time clicking/precice lengthening.
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Did he actually spotted premature consolidation or unequal distraction?
Yeah, it makes sense about the girls' higher success.
I think its both.
In this case Dr.Lee actually spotted upcoming premature consolidation and told him to distract faster. Maybe he should have seen in earlier with more frequent x-rays.
I am sure I read somewhere that the reason girls usually have higher success ration than men in LL is because of their lack of muscle mass in the tigh. Having flexible muslces are good for LL, but having packed too much muscles will cause greater force against distraction meaning internal patients have harder time clicking/precice lengthening.
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Bd,
On your doctors comparison I agree on most part except on dr. Jamal. I do think he has good results. Alihan and one before him are doing well. Emanuel has weak callus formation but that is hardly a surgeon fault. The callus formation are independent to patients variant. He is walking good and I am sure he will do well. Ocean is doing great so far.
In addition he has done over 50, I think 57 to be accurate CLL. Went to same university and practices on same hospital where two late pioneer CLL doctors (bliskunov & dragon) used to work. They both invented IM nails and dr. Jamal upgraded to his own version call jamalov nail. The nail is full weight bearing made of titanium and only requires two nails instead of four. He also did his PhD thesis in internal tibia. I think professor jamal is a great caring doctor and works in institution where they have done over 500 CLL surgeries. Sometime I think he is not getting enough credit he deserves.
His 15 years of experience also speaks for itself. He and dr. Birkholtz are top two up and coming CLL doctors. This is my opinion and wanted to share with you all. I welcome any comments and criticism.
FYI- these are the two doctors I am thinking to go with but still undecided.
Best,
Cooper
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Cooper, I agree wholeheartedly with you. My major concern is the nail he uses. He's had a problem twice with the clicker not working properly, which is why emanuel needed a second surgery to correct this issue. emanuel may have not needed to be in a wheelchair for so long if it wasn't for this second surgery.
Also, Ocean posted recently that his clicker wasn't activating properly which Dr. Jamal has said he will correct in his second surgery. Those two cases are mostly concerning to me. I am rooting for Ocean to do really well, because that might make Dr. Jamal a viable option again to me.
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Why do you think that the more extreme leg lengthenings 8cm+ have all been achieved by albizzia clicking type nails while it seems even with precise 2 getting to 6-8 has been a major struggle for so many patients?
I think Leechlet originally wanted Guichet because of the potential for 10cm.
I may be mistaken but it seems Betz has two things in common: 1) the highest lengthenings in the diaries 2) ... the most titanium nail replacements ..
Why hasn't there been as many titanium nail replacements for precise than as for albizzia type nails (gnail, betzbone)?
What are your thoughts on the civil unrest in Ukraine?
Do you believe that going from 5'6 (or was it 5'5...) to 5'8 will be life changing for you?
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Why do you think that the more extreme leg lengthenings 8cm+ have all been achieved by albizzia clicking type nails while it seems even with precise 2 getting to 6-8 has been a major struggle for so many patients?
I think Leechlet originally wanted Guichet because of the potential for 10cm.
I may be mistaken but it seems Betz has two things in common: 1) the highest lengthenings in the diaries 2) ... the most titanium nail replacements ..
Why hasn't there been as many titanium nail replacements for precise than as for albizzia type nails (gnail, betzbone)?
What are your thoughts on the civil unrest in Ukraine?
Do you believe that going from 5'6 (or was it 5'5...) to 5'8 will be life changing for you?
Hi,
Guichet doesn't need titanium replacements. His nail is much superior to the Betzbone. Please don't post misinformation when your don't have actual experience. The titanium nail replacement is a very traumatic surgery. Apart from the cost, patients experience it as more painful than the original LL surgery. With a good nail and a good surgeon nobody needs a titanium replacement.
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Also i forgot to mention that most of the time patients lose a few mm due to the titanium replacement.
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Why do you think that the more extreme leg lengthenings 8cm+ have all been achieved by albizzia clicking type nails while it seems even with precise 2 getting to 6-8 has been a major struggle for so many patients?
I think Leechlet originally wanted Guichet because of the potential for 10cm.
I may be mistaken but it seems Betz has two things in common: 1) the highest lengthenings in the diaries 2) ... the most titanium nail replacements ..
Why hasn't there been as many titanium nail replacements for precise than as for albizzia type nails (gnail, betzbone)?
What are your thoughts on the civil unrest in Ukraine?
Do you believe that going from 5'6 (or was it 5'5...) to 5'8 will be life changing for you?
The distraction mechanism is different. Albizzia nails rotate to distract, precice uses induction or something to distract. Precice is not strong enough to distract against the strength of the muscles when you lengthen 6cm++. Thats the reason.
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Why do you think that the more extreme leg lengthenings 8cm+ have all been achieved by albizzia clicking type nails while it seems even with precise 2 getting to 6-8 has been a major struggle for so many patients?
I think Leechlet originally wanted Guichet because of the potential for 10cm.
I may be mistaken but it seems Betz has two things in common: 1) the highest lengthenings in the diaries 2) ... the most titanium nail replacements ..
Why hasn't there been as many titanium nail replacements for precise than as for albizzia type nails (gnail, betzbone)?
What are your thoughts on the civil unrest in Ukraine?
Do you believe that going from 5'6 (or was it 5'5...) to 5'8 will be life changing for you?
Hmm, the other guys seem to have covered most of your questions. But in regards to going from my current height (5'5.75") to 5'8, yes, it will definitely be life-changing. The life changing comes not from how others will treat me, but from how I will view myself and reflect that in my personality. I won't feel short anymore, and I won't be grouchy as result. I'll feel taller, more confident in myself, and more outgoing and approachable than before. I want to reach 5' 10" after 2 surgeries, but who knows, maybe I'll be so content with 5' 8" that I won't need the second surgery. 5' 8" is by no means tall or even average where I live, but 5' 8" is leagues better than being 5' 5.75".
As far as the civil unrest in Kiev, it's a real bummer. No way I would consider lengthening there in its current state.
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Wanted to share some info, Dr. B sent me the guesthouse homepage that contains pictures: http://www.natanja.co.za/
It looks beautiful, a huge change of scenery for me (right now, I look out my window and all I see is drab grey and snow). Dreaming about the plush greens in SA!
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I was planning to get personal consultation by April to check out the place, but looking at those pictures, I might not need to. The place looks relaxing.
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Wanted to share some info, Dr. B sent me the guesthouse homepage that contains pictures: http://www.natanja.co.za/
It looks beautiful, a huge change of scenery for me (right now, I look out my window and all I see is drab grey and snow). Dreaming about the plush greens in SA!
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Hello everyone!
I'm currently in the waiting room for a certain doctor... Dr. Paley! (what a twist!)
After having a 3 hour long phone call with Arche on this forum (props to him, he's a very fun guy to talk to) he reminded me how stupid I am for not considering Paley with the finances I have. Well, I took his advice and here I am! After my consult, I'll update this thread with what I've learned and the options I'm considering. I have a looong list of questions for him (if you want me to ask him anything in particular, just post here.)
The institute is beautiful, and the hospital is really nice. Staff I've met so far are super friendly. I also saw the red car Sweatpants posted in her thread, parked right outside the building. :D
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Hello everyone!
I'm currently in the waiting room for a certain doctor... Dr. Paley! (what a twist!)
After having a 3 hour long phone call with Arche on this forum (props to him, he's a very fun guy to talk to) he reminded me how stupid I am for not considering Paley with the finances I have. Well, I took his advice and here I am! After my consult, I'll update this thread with what I've learned and the options I'm considering. I have a looong list of questions for him (if you want me to ask him anything in particular, just post here.)
The institute is beautiful, and the hospital is really nice. Staff I've met so far are super friendly. I also saw the red car Sweatpants posted in her thread, parked right outside the building. :D
Based on my e-mail exchange with him it seemed like he no longer does cosmetic lengthening with anything but Precice, but for those considering him for tibias it might be an issue considering the possibility of permanent knee pain from inserting the rod. Would be interesting to know what he has to say about the knee pain issue in general and if he would do externals for lengthening tibs if someone was adamant about not getting an internal device.
Also since you're in the area, it might be worth visiting Dr. Jean Cole.
http://fhorthoinstitute.com/physicians (http://fhorthoinstitute.com/physicians)
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Kilo,
You bet permanent knee pain is on my list of questions to him. I am very interested in the idea of quadrilateral lengthening but not if there's such a large probability of a permanent complication..
Thanks for the doctor suggestion too :) I'm only in Florida for the day so I won't have enough time to visit that doc though.
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I wonder how much is your allotted budget for your LL, if you don't mind. Dr. Paley is on my top list if money is not an issue.
Does he really give old forum members discount? How about us, LL Forum members? ;)
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Does he really give old forum members discount? How about us, LL Forum members? ;)
Mentioning old forum to Paley is just a marketing gimmick by Sysop to booster the popularity of his website so that doctors would pay more for advertising. Chris and other members said that the price would work out to be the same whether or not you do Sysop a favour mentioning to the prospective doctor about old forum . Don't be tricked please.
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Wow. I learned so much. He seriously knows what he's talking about and I can say that he also evaluated my body much better than Dr. Rozbruch did. I just got off my flight from Florida and am tired as hell, but I'm going to give a long update on what I've learned tomorrow, while it's still fresh in my brain. The first half of the consult was with one of his fellows (but don't let this deter you, the fellow has assisted Paley on over 100 of his surgeries).
Just from the consult, my big summation point is, if you have the money, go Paley! You will not be disappointed. As in any surgery, there's no guaranteed results, but Paley is the most respected in this field for a reason.
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Good for you. Are you going to him for sure? Can't wait for that update 8)
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So no go for Birkholtz? I agree with everyone else, if you have the money, go with Paley. I was banking on you being Birkholtz's first though.
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I wonder how much would be the difference between Dr Paley and Dr Franz. If not that big, then definitely Paley.
So no go for Birkholtz? I agree with everyone else, if you have the money, go with Paley. I was banking on you being Birkholtz's first though.
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I wrote up a big summary of key points from our consult, which I'll elaborate on in an FAQ-style post. But first I should mention that I was very interested in doing quadrilateral lengthening. There's 2 types, one is simultaneous (meaning you have both surgeries on the same day) and then there's staggered (have tibiae surgery first, and then femurs done 3 weeks later, what Sweatpants is doing). My consult jumped straight into quadrilateral lengthening with Paley. I'll get into lots of other interesting things I've learned too after our quadrilateral discussion.
What are the costs of quadrilateral lengthening for simultaneous vs. staggered?
The pricing for simultaneous is $150,000 and the cost for staggered is $170,000. Keep in mind, the increased price is not going into my (Dr. Paley's) pocket. It's entirely to the hospital for its OR time costs.
Do you recommend simultaneous quadrilateral lengthening?
No. I don't know if it's because I'm getting older, but I've been taking a lot less risks lately laughs. (he continues to elaborate on this point, but I'm breaking everything up for organization)
What are the risks associated with simultaneous quadrilateral lengthening?
There's a lot. You have a very increased chance of fat embolism, definite need for a blood transfusion, and an increased risk to your life. We've only done 1 case of simultaneous limb quadrilateral lengthening and thank god he didn't have any serious issues. The way I look at it is this- you're young, healthy, and fit. Most likely you wouldn't have any severe complications, but the price differential is really not that hefty ($20,000) and risk to your life is not worth any amount of money. You're going to be in a lot of pain and suffering too. It's a lot of trauma for a body to endure, and I don't want you to have to go through that kind of pain.
We recently had a case of fat embolism with one of our patients. It was scary, and he came out with only an increased heart rate for 2 days, but it could have been worse. These are things that you cannot predict will or won't happen.
Misc. on quadrilateral lengthening.
Chances are, with quadrilateral limb lengthening, you will not be able to lengthen as much as you'd like. The reason is the intense strain your soft tissue is going under simultaneously, and for this reason, you will only be able to lengthen at max 10 cm. The man who did simultaneous surgery only went up to 8 cm because he was very concerned about his proportions.
Lengthening is initially done .75 mm/day on the tibiae initially and 1 mm/day on the femurs. Because you're 21, you'll be allowed to begin lengthening the day after surgery. If you were over 30, you would be required to wait at least 1 week before you were allowed to lengthen. Keep in mind, these lengthening rates are very subject to change, and we will be monitoring your rate of progress to see which segments need adjustments based on the complications you're incurring. ROM is key, and if your ROM is affected, we'll have to act accordingly by reducing your lengthening (for some patients, we have stopped lengthening entirely).
For staggered surgeries, you will want someone with you the first 2 weeks of both surgeries. That means for 2 weeks after your first surgery and for at least 2 weeks after your second surgery.
Have you had any complications with your PRECICE/PRECICE 2 nails?
Yes, we've had two PRECICE (first generation) nails break. Ironically, it was at the end of their lengthening period too. One of them said he wasn't even aware that he was lengthening anymore since he didn't have any pain, and as a result performed over-strenuous physical activity which resulted in a broken nail.
Have you heard about the PRECICE 2 lengthening complications in South Korea and have you this yourself?
No, we haven't had any of our PRECICE 2 nails break or stop lengthening knocks on wood out of already over 40 nail insertions. We had 2 cases of the first generation PRECICE nails that didn't lengthen, but that was out of over 100 nail insertions. We check to make sure that the nail lengthens properly when we insert the nail and lengthen your leg 1 mm.
What drugs will I be on after surgery?
Pain medication and blood thinners. You will be required to stay on a blood thinner the day after surgery until when I say you can stop. This will most likely be 1-2 months after you're done lengthening, so you will be on blood thinners for a while. You have an increased risk of blood clots (which can result in heart attacks) while undergoing LL and we make sure to take all necessary precautions for your livelihood.
What's physio like?
One hour a day, 6 days a week. We notice the guys who do the most physical therapy breeze by leg lengthening. That means taking the exercises you learn here, and continuing to do them for hours back at your home. One guy even brought his own physical therapist and he really breezed by here, lengthening his femurs 8 cm. We think it's because his PT was so hot though, kept him motivated. everyone laughs, fellow nods his head in agreement
What is weight-bearing on the PRECICE 2 like?
We only allow our patients to bear 75 lbs of weight per leg on the 12.5 mm diameter nails. This means that you can never have your full weight on one leg. The fellow then proceeds to show me what walking with a walker looks like, and while I should have already known this, it surprised me because then I realized just what the extent of what your mobility is reduced to. Every second, he had to be mindful that his weight was on the walker when he lifted a foot to make a step. Any mistep and displacement of weight, and you could risk your entire lengthening procedure (and additional costs). Physio will train you thoroughly so you can become good at walking.
The 12.5 mm nail is generally used for your femurs. For your tibiae; however, we'd most likely end up using the 10.7 mm nail which only allows up to 50 lbs of weight-bearing. We then proceed to look at my x-rays, and I point out that my tibial canals are actually wider than my femoral canals, which interested him. Yes, you may be able to fit 12.5 mm diameter nails in your tibiae, but the decision is really made during surgery and best judged by how the nails fit in your canals.
Would I be confined to a wheelchair? (I weigh 140 lbs, and obviously a 50 lb weightbearing nail wouldn't support my weight)
No, but you would be expected to put a lot more weight on your walker. (I didn't really get too clear of an answer on this, so I want to follow up with an email to ask about it).
I had a consultation with another doctor who recommended that I insert the nails into my femurs retrograde (via the knees) as opposed to antegrade (via the hips) due to the narrowing of my femoral canals closer to the top part of my femurs. Would you agree with this?
No, I wouldn't. First of all, I would argue that it wouldn't make much of a difference because the narrowing occurs in the middle of your femurs, which would require us to ream your canals regardless of which way we insert it. Secondly, retrograde insertion would damage cartilage in your knees. That's something we'd want to avoid.
At this point, we move onto the physical examination of my body. Like I said in my last post, Paley evaluated my body 100x better than Rozbruch did, and Paley knew exactly what needed to be done in regards to my inflexibility and tightness. I don't want to crap on Rozbruch because he's a nice guy, but I don't think he's as well-suited for cosmetic leg lengthening. He was previously a fellow of Dr. Paley and has a lot less expertise in the cosmetic side of the field (mostly because the prices in the NYC hospital he operates out of are astronomical when uninsured). Rozbruch also spent a lot less time with me, and didn't have much experience to refer to when answering my questions. Paley also confirmed things that I had already learned from my orthopedist, which meant he wasn't fudging facts.
Wow, BD, you are incredibly tight. In many different areas. First of all, we would do an ITB release on you. We do this on practically all our patients, and it's a really easy and safe procedure. It's neither a muscle or ligament, it's just thick tissue that runs along the side of your thigh, which due to its tightness, will make your lengthening process extremely difficult. Once released, it can always be regenerated. The price of this release is included in the surgery. (I'd like to mention that I fully agree with his take on the necessity of ITB releases. One: because I notice patients that don't have an ITB release, have a much more difficult time with their recovery due to muscle tightness and two: because his patients have very good outcomes).
However, we have some other problems that need to be released as well. The biceps in your thighs, otherwise known as the Biceps femoris, will need a very small release as well. It will be a small incision right here, which will improve your flexibility as well. This is easily rebuilt as well, people commonly have their ACL rebuilt from using the muscle in this area. (to imagine where the incision would be, bend your right knee, grab your right thigh closest to your knee, and feel underneath it. Feel those two muscles? The muscle on the left will be where he makes a small incision. Also, your ITB release will occur near your knee as well, to imagine where just touch the outer part of your thigh closest to your knees. It's very tough and strong to the touch.) Unfortunately the biceps femoris release is not included in the surgery price. This will cost an additional $5,000.
And lastly, you will most likely need a Gastrocnemius soleus release surgery. The reason for this is because your dorsiflexion is very, very tight. About 10 degrees ROM. (Your dorsiflexion is where your feet bend upwards at your ankles, I have an unnaturally tight achilles tendon which has been confirmed by my orthopedist). For this release, we would need to perform a gastrocnemius soleus release surgery, which I do quite rarely. I don't like doing them as well because it can result in a weaker "push-off" in your calves, which is why sprinters would be negatively affected by this surgery. You will likely rebuild the strength though. The cost of this release is also an additional $5,000.
So that would mean the cost of my surgery would be...
Yes, so your surgery for same-day procedure would be $160K and for staggered it would be $180K. (I was pretty much sweating bullets from that answer, that's a lot of money!! :o. I'll talk more about my finances after this post).
Out of order, misc. questions.
I notice some patients underwent hypertrophy in their calves after this surgery. Have you ever had this happen and why does it happen?
That's because of a procedure called Facsiotomy. It's done to relieve tension in the tibiae when performing the surgery. Think of it like cutting a piece of chicken meat- first you have the membrane that surrounds the chicken meat. Once you cut that membrane, the chicken starts expanding and falling out of it, as if it were being trapped in there. That's kind of what this procedure does, and causes your calves to look girthier. Eventually the membrane heals and prevent your calves from getting any thicker, but the girthiness will stay permanently. We have no problem doing this on guys (which made me excited, I really want to have thicker calves!) But we do not do this procedure on women ever, since they really do not want to have thicker calves (good news for you ladies out there!)
Here, I'm talking about when I first discovered LL and how I thought it was a pipedream when I first saw it in the movie Gattaca.
Paley scoffs and while smiling says yea, I know, I was the consulting doctor on that scene in the movie.
What!!!! Mind=blown. ;D I sat there with a stupid grin on my face when I heard that. The man is seriously Hollywood.
I've read reported studies of over 70% persistent/permanent knee pain in patients after insertion of the IM nail into their tibias. Have you seen this with your patients?
No, I have never seen close to that figure with my patients. Probably less than 10% have this issue. Fellow nods and adds that he's only seen it in less than 10-15% of his patients from their case studies. What causes it? That's the thing, no one knows what causes it. My decreased rates for persistent knee pain could be coming from from the way I insert the nails into the tibiae, which is higher up the patellar starts talking with a lot of scientific terminology with his Fellow that I couldn't quite follow.
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And that's about the rundown on my consultation! I wish I could have recorded it, since an actual recording would do a lot more justice to what was said rather than just trying to remember everything. But you get the gist. That was the longest post I've written here, and I'm wiped out, so I'll come back later today and respond to everyone's questions (and PMs!) I hope this really helps for your future decision, and gives you better insight into what you should find out from your doctors. I know if I had the money and time to do it right now with Paley, I would do it 110%. He really knows his stuff, has decades of experience, and clearly upholds precaution, three of the most important factors when considering a doctor. I recommend that you still do your own consultation with him, because his answers vary from whom he's speaking to. His price for a consultation is $750 and also $350 for the x-rays taken. My flight was about $500 and for considering such an expensive surgery, getting to know your doctor and their facilities is well worth it.
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Hey BD!
This is an awesome post that is extremely valuable.
Gives you a lot to think about. I think it is evident that Paley is certainly the best option out there. What I love is his vast experience, honesty and focus on safety. Most of us have been influenced by him in some way.
If you can afford it, go for it, but be careful about quad.
Good luck with your decision.
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Wow, thanks for the abundance of interesting information! That's a lot of releases the doc wants to do on you. He's confident that you'll recover from all of them? The gastrocnemius soleus release seems like it would have the most long term effect. I thought after that release people who need them aren't ever quite the same. Interesting reading that Paley thinks you'll rebuild that strength. Maybe the effects of that release aren't permanent like some others have said?
Judging from your witnessing of Dr. Paley's depth of knowledge, if you did not have the funds to go to him do you think you would have a higher degree of confidence in a different surgeon who had a fellowship or took a course under him, as opposed to a surgeon who has not studied under Paley?
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This is extremely informative.
Thanks a lot.
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BD,
excellent post!
Did paley mention if you did one surgery on your femurs and did 8cm would you have any knee pain in the future do to a large femur:tibia ratio.?
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I wonder how much is your allotted budget for your LL, if you don't mind. Dr. Paley is on my top list if money is not an issue.
Does he really give old forum members discount? How about us, LL Forum members? ;)
The budget question is a real complicated one for me! I know I can spend at least $100,000 on this surgery, but when we start getting in the upper 100s range (for quadrilateral), then I get very nervous. I want to be able to have enough money for when I have to do taxes at the end of the year. Also, I have to base being able to afford the quadrilateral surgery on whether or not my projected income can afford it. I'm going to email him later to see if he has any financing plans.
As far as discounts, nope, that's just an old forum ploy. His prices are actually much higher than they were years ago, so whoever called that LL was going to become more expensive over time was right!
Good for you. Are you going to him for sure? Can't wait for that update 8)
Thanks Smallguy :) I think if I were to do LL with any doctor now, it would definitely be Dr. Paley.
So no go for Birkholtz? I agree with everyone else, if you have the money, go with Paley. I was banking on you being Birkholtz's first though.
Dr. Birkholtz is a fantastic doctor who is still my #2 choice for PRECICE 2. The only reason he isn't #1 is because he operates in a time zone much different than mine, and in a country that has less than great internet speeds. My job relies on me being in the states and having very good Internet. Also, not to downplay the successes of Dr. B, but he hasn't had as much experience in cosmetic lengthening as I'd like. Once he has a breakthrough and starts seeing more cosmetic lengtheners, I think his practice is going to be an absolute hit. I also think anyone considering PRECICE 2 who can't afford Dr. Paley and would have no problem moving to a foreign place should definitely have the surgery done with Dr. B. At least schedule a consult with him, and you'll see that you're in safe hands. :)
I wonder how much would be the difference between Dr Paley and Dr Franz. If not that big, then definitely Paley.
It's pretty significant :-\ Paley charges $80,000 for bilateral femoral lengthening which only includes physio, while Birkholtz charges only $48,000 for bilateral femurs, physio and accommodation for 75 days included. That's an absolutely amazing price Birkholtz is charging because his profit margins are so thin. A pair of nails cost $30,000!
Hey BD!
This is an awesome post that is extremely valuable.
Gives you a lot to think about. I think it is evident that Paley is certainly the best option out there. What I love is his vast experience, honesty and focus on safety. Most of us have been influenced by him in some way.
If you can afford it, go for it, but be careful about quad.
Good luck with your decision.
Dr. B,
I cannot express my gratitude to you enough. You've helped educate and inform so many people on this forum, including myself. Thank you! I really really hope your practice starts seeing a lot of guys from this forum visit you, since you offer such a tremendous opportunity at the best prices anyone will find anywhere for PRECICE 2.
Any LL doctors reading this, Dr. B is a class act. Watch and learn!
Wow, thanks for the abundance of interesting information! That's a lot of releases the doc wants to do on you. He's confident that you'll recover from all of them? The gastrocnemius soleus release seems like it would have the most long term effect. I thought after that release people who need them aren't ever quite the same. Interesting reading that Paley thinks you'll rebuild that strength. Maybe the effects of that release aren't permanent like some others have said?
Judging from your witnessing of Dr. Paley's depth of knowledge, if you did not have the funds to go to him do you think you would have a higher degree of confidence in a different surgeon who had a fellowship or took a course under him, as opposed to a surgeon who has not studied under Paley?
I agree, I'm nervous actually about how many releases I would need. I had a feeling too that it would come to this, because I'm a naturally tight individual, no matter how much I stretch. My dorsiflexion is a joke especially. He's confident that I'd recover from the ITB release and also the biceps femoris release. But, when talking about the gastrocnemius release, it seemed to me like he was unsure when talking about its potential for full recovery. I understand that it'd probably result in a permanent reduced strength in my calves. It's a risk I'm willing to take because I'm not a professional athlete and I can live with being weaker in my calves for height.
I'm not sure if I would go to one of his fellow to be honest. Dr. Donghoon Lee was one of his fellows, and is running a very successful clinic in South Korea, but he doesn't believe in ITB releases and his patients have been having bad results with the PRECICE 2. I still don't know if that's because of his decisions or the nails, but I do believe being a fellow underneath Dr. Paley does give the doctor a lot more credibility. But I'm not sure if it would make me more compelled to select them.
This is extremely informative.
Thanks a lot.
My pleasure. It really helps me to write all this stuff out!
BD,
excellent post!
Did paley mention if you did one surgery on your femurs and did 8cm would you have any knee pain in the future do to a large femur:tibia ratio.?
We went over my x-rays and my tibia/femur ratio is actually .84. This means I can afford to do more lengthening on my femurs to keep the ideal .8 tibia/femur ratio. They recommended 8 cm/5 cm if I were to do two separate lengthening (as opposed to quadrilateral).
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After a lot of discussion with my girlfriend, we realized I probably shouldn't go the quadrilateral route, instead play it safe and lengthen 7-8 cm on my femurs. Recover, consolidate, and then come back for 5 cm on my tibias. Who knows, I may even be happy with my height after 8 cm! :) And I come that much closer to my goal of being 5' 10" one day...
This reason is not only for safety, but also financial security. 160K-180K is a s**t-ton of money, so I'm better off being completely financially secure and doing just 1 LL surgery this year, and then a 2nd next year.
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I was planning on consultation with Dr Paley, now I don't have to. Thanks again.
Seems like you're more likely to get it done with Dr Paley in May? I don't think I can afford him unless I score big in a poker tournament. All the best.
It looks like he does not believe that one can avoid those releases just by stretching pre-LL to improve flexibility.
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This is very informative, thanks BD!!
Is the ITB and Biceps femoris release a standard procedure on all his patients? Or does he release other thigh muscles for femur lengthening?
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I was planning on consultation with Dr Paley, now I don't have to. Thanks again.
Seems like you're more likely to get it done with Dr Paley in May? I don't think I can afford him unless I score big in a poker tournament. All the best.
It looks like he does not believe that one can avoid those releases just by stretching pre-LL to improve flexibility.
No problem! I'm probably going to book my surgery with Dr. Paley very soon so I can get a May date. As long as nothing else comes in the way :)
I think it makes sense too that one cannot just stretch to avoid a release. When you look at this way, no one can stretch any amount that will make the current muscles we have able to easily withstand an extra 6-8 cm of length. The muscles would have be loose and droopy pre-lengthening for that to happen.
This is very informative, thanks BD!!
Is the ITB and Biceps femoris release a standard procedure on all his patients? Or does he release other thigh muscles for femur lengthening?
No problem :) The ITB release is standard, and biceps femoris release is almost as common as well.
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Hey BD!
This is an awesome post that is extremely valuable.
Gives you a lot to think about. I think it is evident that Paley is certainly the best option out there. What I love is his vast experience, honesty and focus on safety. Most of us have been influenced by him in some way.
If you can afford it, go for it, but be careful about quad.
Good luck with your decision.
Dear Dr Fanz,
These questions below are a bit hypothetical. I don't mean it literally, and I do not mean to be disrespectful to people involved in CLL but I am curious what your thoughts on it are.
1. What is the motivation for LL surgeons to ever perform CLL? It seems like not much of the money from the surgery actually goes to the doctor, and I wonder with the very long process and hours spent that perhaps it is not financially worth it compared to doing other operations?
2. Could they not improve their profitability just by rejecting every CLL patient or only charging for a consultation and then rejecting every candidate?
3. People on these forums report greatly improving their outlook on life/feeling better about themselves after becoming taller. Do doctors find this outcome to be smaller/more of a nuisance compared to fixing someone with an actual physical deformity? I look at hair transplant surgeons and I know the comparison is not perfect but they are in some ways mainly treating the mind, not a physical body part. And they believe, or at least say they do, that their work and mission helps people and is worthwhile.
And
4. Why 165cm upper limit? And do you think if the year was 1800 the limit would be more like 155 cm? Or if you were from the Netherlands it would be a higher limit like 170cm? I remember Dr Paley in one of his writings at first resisting to operate on a man from the netherlands because the man was still taller than the average male height.
I hope I asked these in respectful ways. I am just musing.
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Bd,
Did you ask if precise malfunction than what will be immediate solution. Do you get free nail and surgery or you have to pay entirely everything again. I hope it's not the latter.
Thanks
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Dear Dr Fanz,
These questions below are a bit hypothetical. I don't mean it literally, and I do not mean to be disrespectful to people involved in CLL but I am curious what your thoughts on it are.
1. What is the motivation for LL surgeons to ever perform CLL? It seems like not much of the money from the surgery actually goes to the doctor, and I wonder with the very long process and hours spent that perhaps it is not financially worth it compared to doing other operations?
2. Could they not improve their profitability just by rejecting every CLL patient or only charging for a consultation and then rejecting every candidate?
3. People on these forums report greatly improving their outlook on life/feeling better about themselves after becoming taller. Do doctors find this outcome to be smaller/more of a nuisance compared to fixing someone with an actual physical deformity? I look at hair transplant surgeons and I know the comparison is not perfect but they are in some ways mainly treating the mind, not a physical body part. And they believe, or at least say they do, that their work and mission helps people and is worthwhile.
And
4. Why 165cm upper limit? And do you think if the year was 1800 the limit would be more like 155 cm? Or if you were from the Netherlands it would be a higher limit like 170cm? I remember Dr Paley in one of his writings at first resisting to operate on a man from the netherlands because the man was still taller than the average male height.
I hope I asked these in respectful ways. I am just musing.
Thanks. With regards to points 1&2. Personally I believe there is merit in this surgery. See my post on the ethics of CLL elsewhere. This is a small part of most respected LL surgeons' practice and is certainly not as lucrative as other pursuits. On average around 10-15% of th cost of CLL ends up in the doc's practice and the profit margin on this amount is around 25% in most practices.
This means that for a 50K CLL, I personally take home 2K. Probably not worth it. Unless you count the fact that you're helping someone.
Point 3: it is certainly worthwhile. Changing height is almost like science fiction and fundamentally changes peoples lives. It is definitely life changing.
Yes, the limit is arbitrary. Consensus has it that CLL is worthwhile for individuals more than 2 standard deviations shorter than the average. This means 165 in most western societies. Is this acceptabe? I dont know.
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[quote author=Franz link=topic=237.msg7056#msg7056 date=
Point 3: it is certainly worthwhile. Changing height is almost like science fiction and fundamentally changes peoples lives. It is definitely life changing.
[/quote]
Great point Dr. F. I am forever grateful for your input and opinions. I am always excited to read your comments and get some invaluable information plus always great to hear the REAL doctor opinion.
I was cracking up when you commented...THIS FAKE DOCTOR HAS 8 operation to perform tomorrow on other thread with smiley face.
Your contribution is overwhelming and I truly hope and praying you will stay with us for a looooooong time.
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Holy ... I'm scheduled with Dr. Paley for May 29th!!!!!! :o :o :o :o
This is becoming a reality fast! Also booked my stay for one of Paley's recommended extended-stay hotels (because shuttle between hospital and hotel runs here so that way I don't have to rent a car). Rate wasn't bad and it includes all handicap accessible amenities with also a kitchen within the room.
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Congrats dude! All the very best! :)
Keep a detailed diary!
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Congrats dude! All the very best! :)
Keep a detailed diary!
Will do :) I think there's a severe lacking of videos for LL patients doing physical therapy so I'm going to film a lot!
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Congrats BD... Looking forward to your diary.
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Congrats BD... Looking forward to your diary.
Thanks Cooper! I look forward to seeing the doctor you choose as well, it's been hell getting to this point. :P
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I am not able to focus on anything. So frigging difficult and I suppose should be that way. After all this can make or break a life and well being. You should be fine with Precise and especially with dr. Paley tutelage.
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Congrats, BD!!
It's getting more and more real for you ;)
I'll be leaving Florida by the end of May, so probably would be only able to wish you luck here.
Anyway, best of luck, you r gonna be in goods hands all way long and I sure you are not going to regret your choice.
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Hi Bilateral Damage,
Dr. Guichet does not recommend doing the ITB release. If your goal is more than 5 cm have you consider going to Doctor Guichet?
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You're all locked in.
All the best!
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Congrats, BD!!
It's getting more and more real for you ;)
I'll be leaving Florida by the end of May, so probably would be only able to wish you luck here.
Anyway, best of luck, you r gonna be in goods hands all way long and I sure you are not going to regret your choice.
That's too bad, I wanted to be able to see you in person. :) I truly know I'm in good hands with Dr. Paley, so I'm not nervous at all for the surgery!
Hi Bilateral Damage,
Dr. Guichet does not recommend doing the ITB release. If your goal is more than 5 cm have you consider going to Doctor Guichet?
Hey Drew, you're right, I saw leechlet's video on Guichet's explanation for it. His reasoning was interesting, but I think all doctors have different opinions in every aspect on LL. Even the world renown ones have differences in opinion, and for that reason, I made by decision based on experience of doctor. Guichet is experienced, but I don't think anyone comes close to Dr. Paley's experience with CLL and LL. Also, as for convenience sake, it made more sense for me to stay in the U.S. for my job.
You're all locked in.
All the best!
Thanks! ;D
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All the best, BD! :)
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Hello,
Are you able to have surgery with Dr. Paley and not get a release?
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Holy s**t... I'm scheduled with Dr. Paley for May 29th!!!!!! :o :o :o :o
This is becoming a reality fast! Also booked my stay for one of Paley's recommended extended-stay hotels (because shuttle between hospital and hotel runs here so that way I don't have to rent a car). Rate wasn't bad and it includes all handicap accessible amenities with also a kitchen within the room.
that's about 70days from now.. you should really enjoy you're next 70 days and do all taboo in LL
like drinking , jumping , dancing :P
all the best.
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Hello,
Are you able to have surgery with Dr. Paley and not get a release?
Yes, but of course this depends on your consultation with him. If he really recommends you to get an ITB release (which is included in the cost of the surgery) you should follow your surgeon's advice.
that's about 70days from now.. you should really enjoy you're next 70 days and do all taboo in LL
like drinking , jumping , dancing :P
all the best.
Haha you bet! I've been drinking more now to make up for lost time during LL. ;D
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All the best, BD! :)
Thanks Chris! I hope I can do LL as well as you did :)
Paley is the godfather of modern CLL and LL.
All the best bro :)
Cheers :) You're in great hands with Dr. B too.
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Additional Costs for LL
Hey guys! Surgery's coming up soon so I thought I'd bump this thread and give everyone a quick update on what I'm expecting to spend outside my surgery.
So far I've got:
- Homewood Suites living for 3 months, includes fully furnished room and kitchen, dinner Monday - Thursday, breakfast everyday, pool, fitness room, handicap-accessible shuttle transport between Hotel and Dr. Paley's office (very important). Cost incl. taxes = $6,433.56
- Caretaker. Unfortunately my girlfriend cannot assist me the first few weeks due to commitments so I will be on my own and hiring a caretaker. I'm going to play it by ear and see how much help I truly need each day for the first 2 weeks. United Nurses is very flexible and allows me to hire a caretaker 2 hours before I need them. Cost = $20/hour. I'm expecting to pay at least $1,000 for this service.
- Silical System 1,2 and Boost, 3 months supply. Cost = $200.
- Flights Cost = $1,100.
- X-Rays + Consult with Paley pre-surgery. Cost = $1,050
I'm expecting to pay at least $10,000 on top of the surgery, so try to account for these costs if you're going with Paley.
Forgot to add- I'm also bringing my car down to Florida (I'm having it delivered by truck shipping). Cost = $600. I won't be permitted to drive for at least 3 weeks after surgery, but after then I'll be permitted to drive (at my own peril and off of any pain meds). I only want to drive down the road from my Hotel for quick Walmart runs.
Sentiment
Pretty excited and ready to get this over with. I'm in extremely good physical shape right now and I intend on being one of Paley's fastest recoverers. I'm going to be doing at least 4 hours PT daily and bringing my own exercise bike (will probably be living on this bike after my session with PT is complete each day). 8 cm is the goal, but I'll believe it when I see it. ;)
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Good luck BD!!!
When is the surgery?
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Good luck BD!!!
When is the surgery?
Cheers BH :D
Surgery's on May 29th, 16 more days to go!
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you must be counting the hours right now... ;D
all the best BD
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you must be counting the hours right now... ;D
all the best BD
Approximately 15 days 9 hours 51 minutes and 25 seconds to go ;D
Thanks Diso!!
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Sounds great, BD! We'll definitely be rooting for you.
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Sounds great, BD! We'll definitely be rooting for you.
Thanks MDoW :)
I'm going to be posting a lot of videos on my PT and stretching regimen. Something the community really needs to see!
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Good luck with your surgery and lengthening. This should be really interesting to follow after reading about your consultation with Dr Paley. How much stretching daily have you done for prep?
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If I go with Paley we may be pretty similar. I am in extremely good shape, young, and believe I'd be a quick recovery too.
Depending on when/if I go we might even be there at the same time.
Just to clarify, Paley has expressed that malfunctions of the PRECICE will be covered, included in the cost if they occur, right?
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Good luck with your surgery and lengthening. This should be really interesting to follow after reading about your consultation with Dr Paley. How much stretching daily have you done for prep?
Not as much as I would have liked to. I received an injury a few months ago that made it difficult for me to stretch without pain, and I'm just recovering now so I missed out on a lot of good stretching time. I'm still relatively flexible and can touch the floor easily, but I wouldn't recommend anyone going into this surgery without stretching your hammies and quads (daily) leading up to it.
If I go with Paley we may be pretty similar. I am in extremely good shape, young, and believe I'd be a quick recovery too.
Depending on when/if I go we might even be there at the same time.
Just to clarify, Paley has expressed that malfunctions of the PRECICE will be covered, included in the cost if they occur, right?
If the PRECICE nail malfunctions and doesn't lengthen, Ellipse Technologies will cover the cost of nail replacement and surgery fees.
If your bones pre-consolidate, you will have to cover up to 15K for the surgery to re-break your bone. In the rare case that you need a bone graft, the cost is 30K.
If you break your nail by over-exerting yourself, I'm assuming you would have to cover nail replacement, anesthetic, and hospital costs. Not sure if Paley charges his fee in this case.
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I wanted to link to this post by Stadiometer: http://www.limblengtheningforum.com/index.php?topic=650.msg10615
VERY important and a good point he made (one that I completely missed!) The PT can be covered by your U.S. insurance, just call and check that his institute takes your insurance. I'm going to call tomorrow to see if they take my insurance because that will drop my costs tremendously, even while I'm covering the co-pay. Stay tuned. 8) Huge thanks to Stadiometer!
Also, the 5K discount mentioned in that thread is true and applicable (has nothing to do with old forum either).
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Thanks for this info, its what I needed to hear. I had heard rumblings about PRECICE failure's and would definetly not feel good about cutting another massive check just to get what I paid for. The PT stuff is very interesting- It sounds like it is covered 100% by my insurance, although it sounds like I only get 60 outcalls a year. Not sure if there's a place in the area where I could do incalls.
This in conjunction with the discount could make Paley much more affordable than I'd thought. Just to confirm, this kind of PT is consider rehabilitative PT right?
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Programdude, you feel like a smart and cool person.
Any tips on how to get money online or any way possible? If you have any job, i repeat anything i would gladly take it.
Job is not an option since im not going out there again it's too vicious and i im here so that i can get LL then get a job as a confident person who is more than likely to engage in social interactions.
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What kind of savings do you have?
I want to be discreet so I can't say exactly what I do, but its very related to aesthetics and not too much to do with programming(ok I do build websites).
I think LL is affordable in general, but I do feel safer going with the best. I'd say shoot for bejing if you are having money troubles- I would probably go with them if I was only doing one surgery to be honest, but I think femurs internally followed by external tibias for a smaller gain is the smartest way to go about things.
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What kind of savings do you have?
I want to be discreet so I can't say exactly what I do, but its very related to aesthetics and not too much to do with programming(ok I do build websites).
I think LL is affordable in general, but I do feel safer going with the best. I'd say shoot for bejing if you are having money troubles- I would probably go with them if I was only doing one surgery to be honest, but I think femurs internally followed by external tibias for a smaller gain is the smartest way to go about things.
I wasted all my savings and money gained on weed these last 2 years as self medication and escapism...it worked wonders but as it is obvious i am still where i left off. And then i found out about LL 8) . So am kinda depressed but there is light at the end of the tunnel and i am a lion i will do alot of things to get what i want. but unfortunately social interactions for now is my kryptonite.
That Beijing place you mentioned thats dr.xia right?. yes that seems like an amazing place. I like chinese people in general very intellectual an calm aura. What do you think the total price will be there though.
Why does everything have to be so damn expensive. Not everyone was born with a job from a contact or something. There is people who actually struggle that don't even have a job.
Also i will be lengthening my tibia since that is safer for me, thinking about mobility while being bed ridden for 4 month. Femurs inside have alot of blood thingy going on and is the biggest muscle on the body. You should think twice before messing with that.
unless it's internal method than it's all good.
i don't know man i just feel lost as it is. been looking now for the last 2 weeks ways to get loan from banks. Not asking for much just 100 000:- Hell people take out 200 000:- just to buy a fast car.
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I want to say a few things.
First is that even if you feel hopeless, self improvement can do wonders. I'm 5 8 which is taller than several here, but I had a rough childhood in general. I was plagued by headaches and depression and therefore did awful in school. My family was/is very poor so I knew college wouldn't be realistic. I was blessed with facial aesthetics which got me girlfriends etc. but my confidence and life trajectory was shi*, but then I thought outside the box, got in shape, and started a business. I have a new audi, good income, friends, and a satisfactory love life. I also have about 160k saved so I can put it towards this operation. Now, if you had asked me even two years ago if I thought I would be in a good place, or in a position to spend this much to change my height the answer would be absolutely not.
But the other thing I want to say is that LL will NOT fix your life just like that. Sort of like how I thought getting in shape would fix my other insecurities but nope here I am wanting my height upped. You will not suddenly have all the things you want in life just because you are taller. Therefore I don't believe LL is something you should take a loan out for. You should get yourself to a place you are more happy with, have the cash outright, and do it as an addition to an already good life.
But at the end of the day it is a personal thing. I don't know how tall you are or how much it bothers you. If your life is in ruin because of it then maybe I'm wrong and it is worth it. I just know that I've gotten where I am by avoiding debt at all costs.
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Mis-interpreted what Stadiometer said, please refer to his following post:
To avoid confusion please re-read the original post:
The savings I describe above come from having a private physical therapist who accepts your health insurance come to your home/hotel, or you go to their center instead of having your physical therapy at the Paley Institute.
Patients are not required to have their physical therapy at the Paley Institute, it is offered to cosmetic patients as a way to increase safety by having physical therapy from therapists who have a tremendous amount of experience with limb lengthening patients.
It is my understanding that cosmetic patients can not have their physical therapy covered by their health insurance at the Paley Institute.
I called the office and they said I would have to confirm with Dr. Paley if I could use my own PT and have it covered by insurance. Their concern is that because my injury is caused by cosmetic reasons, that I won't be able to get PT covered. I just emailed Dr. Paley and will update with his response. I'm also going to see if he recommends against hiring a PT that isn't experienced in handling LL patients.
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Hey there BD,
I was wondering if you could go into the payment/financing a bit more. Did you pay it as a lump sum, or did you finance? Paley is on top of my list right now, but I don't know if I can scrounge up $170,000 to pay all at once. If you went down the financing route, how much are you paying monthly?
Thanks, and good luck with your continued recovery!
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Mis-interpreted what Stadiometer said, please refer to his following post:
I called the office and they said I would have to confirm with Dr. Paley if I could use my own PT and have it covered by insurance. Their concern is that because my injury is caused by cosmetic reasons, that I won't be able to get PT covered. I just emailed Dr. Paley and will update with his response. I'm also going to see if he recommends against hiring a PT that isn't experienced in handling LL patients.
Will love to hear about PT options...I do have coverage as well.
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Paley's exact words:
I highly recommend against that. it would almost be a waste of time to work with PTs who don’t know limb lengthening.
Worry less about the cost and more about the safety.
It sounds like it is possible but he's highly against it. I'm inclined to agree with him and will stick with what I have. But I'm sure he'll allow it if you're still interested. Email him to find out the costs saved.
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For this kind of money and the fact that you're 5'8 you should go for 4 inches and hit the 6'0 spot. Then you're set for life.
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Paley's exact words:
It sounds like it is possible but he's highly against it. I'm inclined to agree with him and will stick with what I have. But I'm sure he'll allow it if you're still interested. Email him to find out the costs saved.
I wonder if he'd be more ok with me doing a month with the specialist PT's, me seeing exactly what needs to be done, and using my 60 outcalls to get PT done with me guiding them.
I think I will set up that consultation once I hear back from him and see what he thinks is the best strategy.
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double post
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My conversation with Dr. Paley about this topic during my consultation...
Me: My plan is to lengthen at home. I'd feel more comfortable being at home and having my family there to help me.
Dr. Paley: We prefer our patients to stay here in West Palm Beach during the lengthening as it provides the safest atmosphere for the patient, but If you want to go home then we have some safety guidelines you have to follow. After surgery you have to stay here in Florida for 2 weeks. During those 2 weeks we will record your physical therapy sessions so you can bring those recordings back home with you and show your physical therapist. When you leave Florida you will have a prescription for your physical therapy. Along with your physical therapy you will have to stretch 2-3 times per day on your own. You will also have to return here to Florida every 2 weeks for x-rays and check ups with me during your lengthening. If you are not willing to follow these guidelines I will not perform surgery on you.
It's a very straightforward, no nonsense, safety first approach with Dr. Paley. It probably would be better for me to have PT with therapists at the Paley Institute, but I really want to lengthen at home and the $15,000+ saved on PT and accommodation fees is just an added bonus.
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Hey BD, how are you feeling as the days draw closer to your surgery date? Getting nervous? :D
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Hey BD, how are you feeling as the days draw closer to your surgery date? Getting nervous? :D
A tad nervous but most of all... this is feeling more real than anything! I already had my car shipped and on Monday, I'm finally flying down to Florida and moving into the Homewood Suites. :D I'm excited but also a little weary of just how difficult it will be not to have the full standing and walking capabilities of my legs for the next few months.. I have a few meetings I'll be flying out for so I'm crossing my fingers that I'll be functional enough for them (and the flights). Right now, I'm not taking for granted any little things my legs do (like being able to jog to the bathroom when I really need to use it! :P)
To add some more notes on sentiment before surgery, I was very nervous about my family finding out about my LL. My family likes to keep track of everything I do, so I had to construe a lot of deceitful stories to make me leaving the state for the summer make sense. They ate it all up and I'm in the clear, but it does feel wrong of me for lying to them. I had considered coming out and telling them all about my surgery, but I realized the price saved in living costs and support I'll receive isn't worth the life long judgment I'll face. When I'm dating girlfriends, marrying, having kids, towering over family, etc.. they'll know in the back of their minds it's a lie. To me, it makes sense that I'm doing this surgery, but to them, they'll never fully comprehend. So I'm on this one alone!
As far as loneliness goes, I've always been both an extrovert and a person who really takes solace in his personal space. So I'm not worried about getting lonely this summer. Also, I'm really excited for the change of scenery. ;D I'm viewing this summer as an opportunity not only to improve both physically and the way I perceive myself, but as also an opportunity to meet new people and enjoy the summer sun.
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When is your surgery? Most of my family lives in other states so I shouldn't have a problem disappearing for a few months as long as I can call them. But I plan on doing 7 cms and I think they may notice that when I see them.
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When is your surgery? Most of my family lives in other states so I shouldn't have a problem disappearing for a few months as long as I can call them. But I plan on doing 7 cms and I think they may notice that when I see them.
This Thursday!!! ;D ;D
My pre-OP consult is on Wednesday, where I'll also find out my exact surgery time.
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That's exciting!! Congrats and best of luck to you!
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How'd you go about scheduling your consult? I tried the online form but it doesn't seem to have worked.
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That's exciting!! Congrats and best of luck to you!
Cheers!
How'd you go about scheduling your consult? I tried the online form but it doesn't seem to have worked.
Try his email or the institute's #.. 561-844-5255
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and now... Big D's Day Is Here!!
Surgery is tomorrow. No eating after 12 AM, scheduled to be there by 6 AM tomorrow and my surgery will take place around 8 AM. I decided to take the epidural route (easier, no side effects like drowsiness that are associated with constant influx of drugs via IV). I will wake up with probably minimal pain, but eventually the epidural will wear off and I'll apparently feel like I was hit by a truck. Surprisingly, I'm not worried about the pain. But I'd be lying if I said I wasn't nervous. :)
A few concerns:
- I'm going to have to leave during the middle of my lengthening for a few meetings in different states. How will I balance my lengthening and these meetings? I've yet to figure that out.
- I have 2 disc herniations in my back that I discussed with Dr. Robb (John) at my pre-op today. He's worried about them. They had another patient who had a sciatica that caused her lengthening to be much more painful that it normally would be. The reason being, in a sciatica, the nerves that are already being compressed (causing pain) are now being stretched, which can possibly result in additional pain. At my bi-weekly consults, they'll be monitoring how well/poorly my lower back responds to lengthening. If they think my safety is in danger, they will stop my lengthening. Do I regret lifting too much and herniating discs? Hell yes! :-X
Otherwise, I'm still more excited than ever for my LL journey. I promise to document anything important for you guys to be aware of. I also promise to update my diary after my journey is complete. Not too frequently though, I have to get out and enjoy the height. ;)
It's been a hectic past few days! From packing, shipping car, moving to Florida, working at the same time, it's been crazy to say the least. Right now I'm scrambling to arrange my apartment to be easily accessible for when I'm crippled. I also stocked up on a lot of microwavable foods and canned goods because I know I'm going to be too lazy to put effort into cooking after surgery.
Wish me luck ;D
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All the best! I could only imagine how you are feeling.
Cheers!
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and now... Big D's Day Is Here!!
Surgery is tomorrow.
Wish me luck ;D
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Hope you don't encounter any issues with your back, but at least you're getting treated by one of the most renown orthopedic surgeons and should have more confidence in any issues being caught right away. Man, I'm envious of you getting your surgery done with Dr Paley. :)
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Good luck Big D !!!!!!!!!!!!!!!!!
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Good luck, wishing you all the best for your operation.
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Congratulations, BD! May the force be with you, and may you have the very best of luck!
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Hey BD,
Hope everything is fine and the surgery was piece of cake for you. You are making your dream come true, which is wonderful!!
Wish you best of luck and be strong 8)
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Looking forward to hearing how you're doing with your broken legs! :)
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Hi I am considering going to Dr. Paley. How long do they want you to stay there after your operation? I am from Cali so I would have to fly back home. Also, how expensive is room and board? I believe you stay at a hotel or something after right? Also, they have physiotherapists specifically for limb lengthening right? thank you for answering my questions! Good luck
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Good Luck BD. Following your foot steps in a few days. At the moment driving towards WPB. Just passed North Carolina...see you soon.
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Hey Big D! Hope you're doing well. Keep us updated.
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Hey BD any update? Hope things are going well. God bless you bro!
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Hey everyone,
Sorry for not updating for the past week. I had a very troubling LL journey so far, and it's been difficult for me to find the motivation to write an update. Let me jump straight into it.
I had a successful surgery last Thursday, May 29th. I remember the epidural feeling abnormally painful when being inserted, and I feel convinced that my herniated discs and this could have contributed to the massive problems I ended up having (but none of the doctors will confirm this of course).
On day 2, my caregiver was with me when she noticed my O2 (oxygen) stats started dropping. First they went down to 91. Then, they went down to 74. This happened in a matter of minutes and floor staff quickly rushed into the room and threw a large oxygen mask over my face (50% concentration). I was rushed down stairs to the CT scan to view my lungs and see why I wasn't breathing.
In the CT scan room, they had to transfer me to a different bed. The pain, only the day after surgery and my legs were incredibly sore and sensitive, of being transferred to the bed was excruciating. I screamed and cried out as I was lifted with my legs in the air and dropped onto the other bed. I was then given an IV into my right arm that would feed Iodine into my system and I was pushed into CT scanner. I was also given an injection of Benadryll because I have slight sheLL Forumish allergies and apparently their Iodine was sourced by sheLL Forumish.
In the CT scanner, I felt pressure build up and my IV exploded in my arm, blood splattering all over the place. I screamed out again, and told them what happened. They said not to worry and finished up the scan. They pulled me out, muttering that the key was not properly turned when inserting my IV, so human error caused my IV to explode my blood all over my arm, sheets, robe, and bruised my right underarm beyond recognition.
I was transported then to a recovery room where I was heavily monitored by nurses and doctors for 5 hours straight. The room was too bright, too loud and I couldn't manage any sleep. I found out here that I had pneumonia, and my right lung was heavily clouded in the CT scan.
At this point, I was grateful to even be alive and I never freaked out. It didn't once occur to me to tell my family. I was given treatment plans by doctors and possible causes of my pneumonia. They immediately ruled out fat embolism and said it was likely aspirations (Dr. Paley emailed me himself to tell me how worried he was and all the options were discussed, but fat embolism was ruled out with their tests). Finally, I was moved to the ICU lower level. Keep in mind, this is not the original floor I was placed on. The floor and rooms for Paley patients, the one I paid for, is a beautifully quiet floor, very large rooms, private, and trained nurses in Orthopedic patients. I was moved to the ICU, an extremely loud, busy, ugly floor, with tiny rooms and nurses not at all familiar with Paley patients. There were nurses there for decades who told me I was their first Paley patient.
My stay on this floor was for a long time. Too many bad things happened for me to care to recount. One good thing that stands out to me was when Servando told me I would have to pay for my extended stay in the hospital. This worried me of course, because he didn't know how much it would be and I had no idea how long I would have to stay in this s**t-hole. I emailed Dr. Paley and expressed that I was worried about the costs. Dr. Paley immediately emailed me back and told me not to worry about the costs, he would take care of them, and all he wanted was for me to recover. He gave me a private meeting in my room a few days later, also confirming this while checking up on me. Then the news was confirmed- I had gotten a fatty emboli in my lungs. For those unaware, this is when your fat being reamed out of your femoral canals goes into your bloodstream which then travels up to your lungs.
Dr. Paley in this private meeting also confirms to me that I'm only his 2nd patient ever to have a severe case of fat embolism in the past 3 years, and that I'm the worst case he's ever had of it. What an honor, huh? We talk for a few more minutes and he leaves. There's not much left to say in this meeting because my condition is improving and he's already done his job, the rest was up to me to heal.
I've been on breathing oxygen tubes until today, and I'm finally breathing on my own now. I just finished my IV antibiotics for my lungs today, and will now switch to oral antibiotics. I still am doing a breathing treatment, where I inhale medicated smoke for up to 7 minutes, about 5-7 times a day. To do these treatments, I'm woken up for them and have to breathe in and out of the device. This means I've never had a consistent nightly sleep in my past week here.
My lengthening started day 3 and I'm currently at 5 mm now. My physical therapy didn't start until day 5 because of my troubled breathing. I'm behind in PT as a result, but I'm getting better. Today I finally managed to use my walker all the way to the toilet and back to my bed, on day 8. This may sound like nothing, but I didn't leave my bed until 4 days after surgery and this is a huge success for me personally. (On day 7, taking my first (extremely large) s**t in a bedpan was one of the worst feelings of my life.. getting cleaned up afterwards by another person wasn't pleasant either).
I also couldn't eat anything until day 5. I would become nauseous and nothing was appetizing. I acquired a ravenous appetite by day 6 and had my food portions doubled by talking to the dietitian. She ordered larger meals for me plus 3x a day of Boost, a delicious chocolate drink, 360 calories each and tons of protein. She wants me eating a lot more protein plus getting a lot of leafy greens for my recovery.
Things are on the upswing now and looking better. I can't say I'm not bitter about the experience I've had, but it's in the past and it could have been worse. I'm by no means bitter about the treatment and reception I've received from the hospital. I had extremely watchful and good care on the ICU, and the nurses there were lovely. I've built relationships with some of them that I intend on keeping outside of the hospital. My caregiver was excellent and visited me on days she wasn't working for me (just to check on my health). She bought food for me, trying to spur my appetite. She cared for me like a mother would and affectionately, the mother I needed but didn't otherwise have with me. The treatment was on point and my immune system was strong which is why I healed much quicker than people with pneumonia usually do.
I have no idea how I managed to keep the pneumonia and my very ill state away from my family (who have been talking to me daily) and from my work partners. But I did, and it looks like tomorrow I will be discharged. I'm worried about the discharge because I cannot transfer as well I would have liked to, but getting out of this hospital is my #1 priority. I had the sunlight touch my face for the first time in 7 days today. It was a beautiful feeling.
If you were to takeaway one thing from my post, it should be this: bad things can always go wrong with this surgery. With Western doctors, the most experienced doctors, with excellent physical shape, great health, being young, paying lots of money. It can always go wrong. Prepare yourself for this, and always have someone with you in the beginning of your LL.
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I will resume daily updates when I return to the Homewood Suites. Signing out.
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Sounds like you had a pretty scary week.
Good to hear that you will be discharged soon. Good luck BD!!
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Pretty close call. Glad you're out of it.
Imagine if this happened to a lower rate hospital outside U.S.
Fat embolism is pretty rare. I wonder if you have any suspicion what are the risks for its development. Did they give you any anticoagulant (as infusion)? Did they repeat your CT scan? Are they gonna repeat it?
I could only imagine how mixed feelings you had when you were very sick and still didn't tell anything about it to your folks.
Hopefully, all positive recovery from hereon.
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Hey BD,
I am really sorry to hear about what happened and what you've been through. I hope it will be the last complication on your journey and the rest with be smooth like butter. Be strong and stay positive and keep us all updated...
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Wow, what a start to your lengthening. The whole incident highlights the very real risks of CLL. I'm glad you had a responsible team looking after you and that Dr Paley was compassionate enough to cover your hospital costs when you had to be moved. Here's hoping that the rest of your lengthening is much more free of complications from this point.
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Scary beginning to your LL journey and an important reminder to potential LLers that things can and do go wrong, even when you pay a lot of money and go to a world-renown surgeon like Paley.
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Hope everything's alright bro.
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Hey Big D,
It seems like everything is stabilized from your note. It's a good thing that you're in great hands with Dr. Paley, he's probably the best we got. Good luck, and keep us updated with your condition. I'm sure you're distracting seamlessly already!
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Thank you everyone for the well wishes!
Day 11
I arrived back at the hotel 2 days ago, and I'm making much better progress now. I am walking as much on the walker as needed, going to the bathroom, grabbing drinks, heating up leftovers in my microwave. Something I love is noticing that I could do something today that I couldn't do the day before. It could be tiny but it will really help you see progress as time passes. I've lengthened 7 mm so far, and my only concern right now is how behind in PT I am. I should have started PT at Paley's Institute last Monday but instead I'm starting tomorrow (due to the complications I had).
My caretaker is with me for about 4 hours a day, and she's extremely helpful to have around. From cooking food, passing me things when I'm in my bed, carrying objects (which is pretty much impossible when using a walker), arranging my things when I don't feel like standing. Doing this surgery is a no without having someone with you for the first 11 days at least from my experience. I'm sure I'll need someone until day 30.
Getting off and on the bed is a task, which I'll try my best to explain. My legs are practically useless, and I cannot lift them in the air. So to get off the bed, I have to slowly edge my feet to the side of the bed, where I'll then push my legs off and slowly lower them until my feet make contact with the floor. I have poor ROM, and cannot bend my legs as much as I'd like, so I have to keep my legs bent about 70 degrees when hanging them off the bed. Then I'll push off from the bed, my left hand on the bed and right hand on the walker until I'm standing. Standing is easy for me because of my arm strength and light weight (I'm 10 lbs. under PRECICE weight bearing limitations). To sit back down on the bed, from my walker, I slowly lower my rear onto the bed, left hand on the bed and right hand on the walker again. Sitting down is difficult because I have to be mindful that my knees are at least 70 degrees with the floor. Here's an image that best shows knee ROM:
(http://i26.tinypic.com/2mdksut.jpg)
When my rear is on the bed, I straighten my legs out in front of me and use my arms to pull my entire body on the bed, and keep readjusting position with my arms. My legs are useless, so there's no lifting them to adjust their position. I have to "crawl" my feet to adjust the position of my legs.
I do have pain. I have stretching pain when my legs are being lengthened, probably a 3 or 4, and I'm taking my pain meds every 4 hours to keep it in check. I'm on oxycodone 10 mg. Last night, I had excruciating pain from trying to sleep on my sides (wanted to see if it could be done!) Had to take a pain killer after that. I also noticed my hips are extremely swollen and protrusive, like I grew large hips from this surgery. My PT and doctor's appt is tomorrow, so I'll try finding out if there's anything abnormal with this.
As far as other life things, I've been working since the day after surgery from my laptop. Work is good, but I did have to make a few phone calls a few days after surgery, when I was still on breathing tubes and my voice was shot, which was very difficult (especially while I was trying to hide this from my business partners. My care giver monitored the EKGs hooked up to me during my calls to make sure they didn't start beeping). And also, my family knows!! A few days after I had pneumonia, I called my younger sister and let her know what was going on with me. I knew she would be the most understanding in my family and she was very supportive, calling me everyday to check up on me. Last night, my sister and I decided to tell my parents first (after my family was begging for me to fly out for a trip). My mom started crying and I calmed her down, letting her know that I was OK my entire stay here (of course I didn't tell her about the pneumonia). My parents are actually very supportive now and my dad is asking when he can do his surgery (he's 65, ha!) My mother and sister are coming out this Thursday and are already well informed on what to expect (my walker, lack of mobility) so there's no surprises there. I'm very happy how it went over, but I still have 2 more siblings to tell that won't take this news nearly as well. Oh well, I'm satisfied with what I've got.
See ya after PT tomorrow!
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Big D, so sorry to hear about your scarey experience. I am glad that you seem to be doing much better!
Seeing what you went through with the cream of the crop (Dr. Paley) and not being phased much makes me feel like I'm finally 100% ready to do this. I only hope I get off Dr. Rozbruch's waitlist and do this in early July instead of early August!!
Best of luck, I'll be following your story as I'll be doing internal femurs too!
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Hey BigD,
Nice to finally see you. It was last week but have not mentioned here. You are doing pretty well now. Bit difficulty at the beginning but all that is over. I am sure pal you will do just fine. Keep up the good work, PT at the center and hotel, medicine and positive attitude. You will add 3 inches in 3 months time. You are growing as we speak and so am I.
Good to meet you bro. I am sure you it will get better here on.
Cooper
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Great update. I find your posts very educative and I'm sure it would continue during your recovery/lengthening/consolidation phase.
All the best.
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Big D, so sorry to hear about your scarey experience. I am glad that you seem to be doing much better!
Seeing what you went through with the cream of the crop (Dr. Paley) and not being phased much makes me feel like I'm finally 100% ready to do this. I only hope I get off Dr. Rozbruch's waitlist and do this in early July instead of early August!!
Best of luck, I'll be following your story as I'll be doing internal femurs too!
Thank you YellowSpike! You will fare just fine, as long as you have the time and support base, I totally advocate for you to do this surgery.
Hey BigD,
Nice to finally see you. It was last week but have not mentioned here. You are doing pretty well now. Bit difficulty at the beginning but all that is over. I am sure pal you will do just fine. Keep up the good work, PT at the center and hotel, medicine and positive attitude. You will add 3 inches in 3 months time. You are growing as we speak and so am I.
Good to meet you bro. I am sure you it will get better here on.
Cooper
Great meeting you too Cooper. I can't wait for all the exciting road trips we'll have this summer! ;D
Great update. I find your posts very educative and I'm sure it would continue during your recovery/lengthening/consolidation phase.
All the best.
Cheers! I like to update when I have something to say that could be useful to others. :)
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Day 14
My lengthening journey is very stable now. I reached 1 cm today and I should be 1/8th to my goal. Next Monday, I have my followup with a PA to get x-rays done and see if I'm lengthening properly and if I need to speed up my lengthening. I have a feeling they'll ask me to speed up to 5 lengthening sessions a day (1.25 mm/day) due to risk of pre-consolidation but we'll see.
My pain is about where it was in my last update (3-4) and I'm keeping it in check by taking oxycodone every 4 hours. I do however now wake up from pain. Last night, I woke up around 5 AM with about level 6 pain and I had to stand up and walk around to take my mind off the pain. I couldn't take my pain killer unfortunately because I needed to take my pain killer 30-45 minutes before my PT session (which was at 8 AM). If I would have taken it at 5 AM, then I would have had to wait until 9 AM to be able to take my second oxy, which would have been too late for PT. The 4-hour rule probably isn't this strict, but I'm going to be on pain killers for a long time so I want to treat my liver as well as I can.
I believe this pain came a lot from the lengthening and lack of stretching before sleeping. I do most of my stretching during the day because that is when my nurse is around, and you cannot do a lot of the important stretches by yourself. For this reason, I'll probably ask my nurse to come for 1 short hour during the night before bedtime. I also emailed Dr. Paley to see if I could get any medications for sleeping (like tramadol, which a lot of lengtheners use). He hasn't responded yet so I'll update later with what he advises.
Stretching is the end all be all for LL. I don't know how people could get through LL without a strict routine of stretching everyday. The pain is unbearable if you don't stretch, your legs become stiff and difficult to move. I love going to PT everyday, even though in some stretches I'm in unbearable pain. I'm grateful that the PTs know what they're doing, and know how to avoid giving me pain when possible. For example, during the quads stretch when my left leg is lifted in the air and my right knee is bent and pushed down, I get bad pain around my right knee. This is burning pain right due to my ITB release, and located on the same area, and the PT knew to relieve that pain, that she had to pinch that site. So while pinching the site, she managed to relieve that pain and still give me a good quads stretch.
PT for 1 hour a day at Paley's clinic is great, but it's not enough. All of our PTs require us to do all our stretches at least 2 times a day on top of what we do at the clinic. I currently stretch with my nurse after PT and then stretch by myself at night. I don't recommend doing stretches without someone else because a lot of the important stretches require someone else present and also we don't like to inflict pain on ourselves, so we go easy on ourselves while stretching. For this reason, I'm probably going to get another PT through my insurance and try to milk as many sessions as I can. Stretching is so important, this cannot be stressed enough. Also, my physical therapist allowed my nurse to video record her doing all the stretches on me, this way I can show my new physical therapist when I eventually hire them. I have all the videos backed up and ready to be shown. I'm also going to record any new stretches I come across. I'll eventually upload these to my YT channel for you guys to look at, once I'm not lazy enough to edit and blur my face out of them. Disclaimer: lots of crying children in the background of these vids (and maybe some whimpering from me. ;D)
I've encountered a new pain in my knee, which doesn't feel related to muscle stretching pain. This one feels like nerve stretching pain, which I'm worried about. It's a sharp burn that happens for a few seconds at random. It's not enough to bother me, but it does bring concern. Another lengthener I've been speaking with (and his mother who is a wonderful woman) had nerve decompression surgery done on his knees after having extremely bad nerve pain in his knees. This is a scary thought, going back in for additional surgery. It has set him back a lot, and it sounds like he's in more pain than usual, but he's still pushing through with his mother, who is also a PT (lucky him!) She has offered to give me PT with her son, to motivate him, but I haven't taken her up on her offer yet. :)
My duck-ass is visible, and my butt is entirely gone. These 2 I'm not very worried about because I'll eventually lose the duck-ass and regain my muscles, and they're only temporary faults.
In other news, my days have gotten so much better overall. Yesterday, I was finally given the OK to take a shower (actually, the doctor said "Please BD, for everyone's sake, take a shower!" :D). I took a sitting shower for the first time and it went well, and I took another today. It's quite easy, you just have to lower yourself from the walker onto the seat, leave your walker in the shower (make sure to hang a towel from the walker as well) and once you're done washing yourself with the detachable shower head, you dry yourself off with the towel and raise yourself back onto the walker. On top of finally getting to wash myself, I can finally ride in cars! This is monumental for me because now I'm not limited to where I can go. I went and got a haircut today at a barbershop named fittingly for me right now, called "Shorty's" :). To get into a car, I used my walker to walk out to the car, open the passenger door, push the seat all the way back, lower my rear into the seat, lift my left leg into the car (sometimes using my hands to assist my leg if it's too difficult to raise it that high), and then lifting my right leg into the car. My nurse then folds up the walker and puts it in the back. The guy who works the front desk, his name is Josh (I love him btw, he's such a fun guy to talk to. He's also a CNA if you ever need a nurse and are staying at this hotel) saw me walking out to the car and made the most surprised facial expression and said "you really can walk that good right now!?" This boosted my confidence because Josh has seen a lot of people on walkers! :D
Also, my mother and my sister are coming out to see me tomorrow and stay until Sunday. I'm so excited to see them. They have been the most supportive of me so far, and I'm looking forward to us going out and really enjoying Florida. I also managed to cancel all the business trips I had this summer by claiming a medical injury and no one batted an eye. Set sails for smooth lengthening! I am actually considering potentially lengthening at home. This would reduce costs significantly and might make my life easier with having someone around (and not having to hire a nurse to do everything). I haven't decided yet but I know my family won't be against it, and would be glad to have me home. My only concern is the proximity to Paley if anything goes wrong. So far I've been able to stroll into his clinic and talk to a PA whenever I had a question about something. But then again, Paley is highly responsive to emails, and I can always fly out if anything is amiss. It's an idea, but I probably won't make that decision until I spend at least another week here.
Til next time!
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Awesome news, BD. I was never a fan of stretching before but I see this is why they tell yoi to stretch a lot before surgery. Do you know if the stretches they have you do are the same ones that those in extrrnals would do? Or are there some stretches you can do that would not be possible with externals?
Nice thay you get to see your family. It would probably be good for your mood to be at home. But it would likely be safer for you not to go back until you've stopped lengthenng and are starting to consolidate.
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Hi BD! How are you doing these days? I have been following your journey from the start since I'm keen to do this surgery w/ Paley. Currently I'm in WPB to find out more. How the initial rough patch is now behind you. I wish you well.
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Do you know if the stretches they have you do are the same ones that those in extrrnals would do? Or are there some stretches you can do that would not be possible with externals?
I'm not too sure about that, but my guess would be yes. If I had external frames on my thighs though, it would make all the stretches much more difficult and awkward, but still do-able.
Hi BD! How are you doing these days? I have been following your journey from the start since I'm keen to do this surgery w/ Paley. Currently I'm in WPB to find out more. How the initial rough patch is now behind you. I wish you well.
Incoming update. :) Btw, if you want to meet me or any of the other lengtheners, just shoot me a PM and come over to the Homewood Suites!
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Day 22
My recovery is coming along great. I use my walker to get around everywhere, my PT is impressed with my flexibility and ROM is about 135 degrees, and most of all I'm lengthening properly and my callus is forming strongly. I had my follow-up this past Monday and after looking at my x-ray, Dr. Paley was worried about my callus forming too quickly. He did not advise me to speed up my lengthening, but he prescribed me to take another x-ray and follow-up this coming Monday (which is unusual, because our x-rays are supposed to be spaced out every 2 weeks). I'm glad I have strong callus formation but pre-consolidation is definitely a worry.
Here's my x-ray from this past Monday:
(http://i.imgur.com/nwR6ELIl.jpg)
1.7 cm that day, which means I'm probably around 2.2 cm now (almost an inch taller! :D) I was also really excited after seeing my x-ray, the nail looks like it fits perfectly with little risk of fracture on the shaft (sometimes, when too much of the canal is reamed out, the femur become very thin).
I'm finally driving, which has been such a big satisfaction for me. Being able to go anywhere I want makes lengthening way more fun! I'm also entirely independent now and have no one with me for assistance. It's a bit difficult sometimes, so I'm thinking about hiring a caregiver for some days (but I haven't needed to lately). Big reasons why I would want a caregiver right now: in the morning, I'm so stiff and in pain that I sometimes don't want to leave the bed. If I had the caregiver to get me breakfast, that would make things a lot easier (instead of me walking to the breakfast buffet and serving myself [which btw, is very difficult when your hands are focused on using the walker!]). I'd also need a caregiver for washing my clothes, going shopping for groceries, and cooking (sometimes).
Despite everything sounding like it's going great, I'd say my current mood is unhappy. It's not to say I regret anything (I'm pinching myself with happiness everyday knowing that I'm growing!) But my mood is directly affected by the chronic pain and lack of sleep I'm getting. For anyone who thinks they have a high pain threshold, I promise you that this pain is like nothing you will be prepared for. I thought I would be able to handle the pain, but chronic pain is very difficult to handle. Muscle tightness, soreness, and pangs of random pain are the usual pains I'm experiencing, especially at night when I'm trying to sleep. Also, I feel pain right after lengthening, so I don't look forward to my 4 daily lengthening sessions now.
Pain management is probably the most important aspect to lengthening, right next to stretching. I'm currently taking 10 mg of Oxycodone every 6 hours (which usually wears off by hour 4) which then requires me to take acetominophen. I tried Valium last night for muscle spasms, and I don't think it did much.
But besides the pain, I'm grateful to have my lengthening going so well. 3 weeks passed quickly, only 2 more months to go :D (well, of lengthening. Then I'm probably looking at another 2-3 months before I can fully bear weight).
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Great update. Nice hearing your recovery is going well.
Just a hypothetical question and I know it's probably premature: If given the opportunity (time/finances/etc) to lengthen your tibia after you've completed the femur, will you do it? (knowing that you had a scary fat embolism)
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Sorry to read about your rough start, glad things are getting better for you. All the best for your recovery ahead. :)
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Incoming update. :) Btw, if you want to meet me or any of the other lengtheners, just shoot me a PM and come over to the Homewood Suites!
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Glad to hear that you are doing well. I'd love to meet you and the other lengtheners but I am Muslim, wear a hijab and would find it difficult to organize a meeting. Maybe we can chat here?? I'm here to actually talk to the doctor about my child. But I would love to get my surgery scheduled too. The doctor recommended physical therapy in the pool for my child. Is this necessary while lengthening? Do you do it?
I was also hoping to go back home and do the lengthening away from here and come back and see the doctor every 2 weeks. Has anyone done this? Thank you and good luck!
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Great update. Nice hearing your recovery is going well.
Just a hypothetical question and I know it's probably premature: If given the opportunity (time/finances/etc) to lengthen your tibia after you've completed the femur, will you do it? (knowing that you had a scary fat embolism)
I've been asked this question a lot since being here, and talked it over with my lengthener friends a lot. I've come to the conclusion that it really just depends on how satisfied I am after my femur lengthening. When I'm finally standing and functioning normally at 5' 9", then I'll be able to answer this question best. But as I've told a few people, hitting almost 6' is my dream... ;)
Sorry to read about your rough start, glad things are getting better for you. All the best for your recovery ahead. :)
It's great hearing from you. :D
Glad to hear that you are doing well. I'd love to meet you and the other lengtheners but I am Muslim, wear a hijab and would find it difficult to organize a meeting. Maybe we can chat here?? I'm here to actually talk to the doctor about my child. But I would love to get my surgery scheduled too. The doctor recommended physical therapy in the pool for my child. Is this necessary while lengthening? Do you do it?
I was also hoping to go back home and do the lengthening away from here and come back and see the doctor every 2 weeks. Has anyone done this? Thank you and good luck!
I don't get it. Why would being Muslim make it difficult to meet up?
But yes, ask away. PT in the pool is great. If your child can do it, and the doctor recommends it, then yes, you definitely want your child in the pool.
I'll answer your lengthening at home question in my update. :)
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My doctor scheduled another X-ray for last Monday, here it is:
(http://i.imgur.com/VAVTwJml.jpg?1)
I was at about 2.4 cm in this image. Next x-ray is scheduled for July 9th. Paley said my x-ray looked great, which made me happy. :D
Updates with me: I got sick with a stomach virus for 3 days and had diarrhea non-stop those 3 days. I missed out on PT, could not lengthen/stretch 1 day, wasn't eating, and was admitted into the ER for IV saline. These type of complications can happen to anyone and really set back your recovery. Do yourself a favor during lengthening and be very wary not to get sick (stay hygienic!)
In regards to pain, I haven't taken a single painkiller for 5 days now! 8) It's bizarre, in my last update I was complaining about the chronic pain and just a week later, I'm in my "painless" lengthening stage. I don't doubt the pain will come back as my legs are lengthened further. Also, I definitely still have pain and very stiff legs at times, but the pain is a lot less unbearable (sometimes unnoticeable).
But the biggest update for me is that... I'm lengthening at home right now!!! :o :o
The main reason behind my decision, is that I was lonely. I underestimated completely how much the loneliness gets to you. A few months ago in college I lived by myself, and thought "hey, I'm doing fine on my own! This means I can do LL and not feel loneliness, right?" WRONG! In college, I saw friends everyday, I had clubs and bands that I was in, I went to parties, and most of all, I was a mobile human being! While you're lengthening, you will make lots of friends with fellow lengtheners. But for me at least, this didn't offset the loneliness I felt when coming back into an empty hotel room with nothing to do besides watch TV!
So I made the decision that I had to come home. Having family around me is such a blessing. My mom has been cooking me food, buying me fruits, keeping my diet healthy, and my dad is making sure I have something whenever I need it. My home also has a pool, stationary bike, and I'm starting PT here this Monday. I'm also walking around on crutches now, and have been scaling up and down the stairs easily. I'll gladly answer anyone's 'lengthening at home' questions they have, and what I discover works/doesn't work.
I don't think anyone goes home when lengthening with Paley. Everyone I talked to, who had been in the Paley LL scene for years, said they didn't know of anyone else who did it. The PT I talked to at the Paley clinic said he worked there for 4 years and never saw someone lengthen at home. It makes sense though, when you lengthen with Paley, you get almost everything. The living, the PT, the care, the food, transportation. But it wasn't enough for me when it came to have a support base, and lengthening by yourself is incredibly difficult. I know many people can and have done it, but I don't recommend it.
As far as costs, I'm not saving anything by doing this. It actually costs more, but this is because I'm a unique situation (Paley covered all the costs from the complications I had while in the hospital). If you are planning on lengthening at home, make sure to let him know and see what you would save beforehand. Preferably do this before you pay anything.
I also don't recommend anyone to leave before a month. I stayed a full month before finally going home, and my flight back was incredibly easy. That's because I'm stronger, and have better ROM and flexibility. I sat in a regular plane seat without any additional leg room. If you plan on traveling right after your surgery, I think you're going to have a very, very uncomfortable flight and general travel. Airport staff was fantastic for handicap travel, and so accommodating. Just make sure when reserving your flight that you call and ask for Curbside Assistance with your airline.
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Hey glad you are doing so good! Lengthening at home sounds way better, just don't know if it is as safe. What do you mean that the food is taken care of with Paley? Do they have someone bring you food everyday when you are in the hotel or something?
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Great update and it sounds like you're doing really well, Big D. Reading about how mobile you are (especially with STAIRS - the bane of the Ilizarov patient's existence) makes me wish I could've afforded Paley.
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Hey glad you are doing so good! Lengthening at home sounds way better, just don't know if it is as safe. What do you mean that the food is taken care of with Paley? Do they have someone bring you food everyday when you are in the hotel or something?
I agree, it is not as safe. Stairs, taking a shower, you have to be much more careful with your steps and where you place your crutch. Also, I'm getting used to the crutches but if you're not careful you can easily lose your balance (since you're on two bad legs, not just one). But the tradeoff is a no-brainer for me, since right now I'm living in sanctuary.
To clarify about the food, I meant the Homewood Suites provides breakfast and dinner buffets. They actually do bring you the food (if you call the front desk and ask for it). But it's nice to tip the person bringing you the food. :)
Great update and it sounds like you're doing really well, Big D. Reading about how mobile you are (especially with STAIRS - the bane of the Ilizarov patient's existence) makes me wish I could've afforded Paley.
My advice to anyone who wants the amount of mobility and recovery I've had so far is 2 things: be well below the weight-bearing limit of 75 lbs per leg and also be very top-heavy (very strong upper body). I'm only 125 lbs, my arms and chest are very strong and muscular but my legs are twigs, so I'm very strong and able to lift my body to get around. I also have a lot less risk of damaging my nails, so it's really been a huge plus.
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I agree, it is not as safe. Stairs, taking a shower, you have to be much more careful with your steps and where you place your crutch. Also, I'm getting used to the crutches but if you're not careful you can easily lose your balance (since you're on two bad legs, not just one). But the tradeoff is a no-brainer for me, since right now I'm living in sanctuary.
To clarify about the food, I meant the Homewood Suites provides breakfast and dinner buffets. They actually do bring you the food (if you call the front desk and ask for it). But it's nice to tip the person bringing you the food. :)
My advice to anyone who wants the amount of mobility and recovery I've had so far is 2 things: be well below the weight-bearing limit of 75 lbs per leg and also be very top-heavy (very strong upper body). I'm only 125 lbs, my arms and chest are very strong and muscular but my legs are twigs, so I'm very strong and able to lift my body to get around. I also have a lot less risk of damaging my nails, so it's really been a huge plus.
Are the buffets complimentary? Also how much does it cost to stay there a night? Thank you!
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Are the buffets complimentary? Also how much does it cost to stay there a night? Thank you!
At the Homewood Suites, breakfast and dinner is complimentary. Breakfast everyday of the week, dinner from Monday - Thursday. With Paley, it costs $63 a night before taxes.
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I wanted to add this: for going up and down the stairs, if you feel nervous with using the crutches (which I still do sometimes), a good way of getting up and down is to just sit down on the steps and lift yourself up each step. If you're going upstairs, lower yourself down as regularly with your walker, fold up your walker, and then lift your butt up each step. If you're by yourself, pull the walker with you after you move up each step. If you're going down stairs, you can do the same, but to lower yourself down at the top, it requires at least 2 different banisters or leverages to hold onto when going down. If you have a banister, this makes it much easier to lower yourself and raise yourself up.
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Hi BD!
Great to hear that you are doing so well and at home! Being with family is so comforting.That's something I would like to do as well. I have kids and would not be able to get them out of school for the entire lengthening duration. Dr. Paley told me that PT is one of the most important aspects of this process. How are you managing this at home? Is you therapist familiar with LL and did you have to tell the therapist about your leg lengthening procedure? Keep us updated...Good luck!
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So are you not in FL at all anymore? If you are let me know, I'd be interesting in meeting since I'll probably be crazy after a couple weeks of isolation.
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Hi BD!
Great to hear that you are doing so well and at home! Being with family is so comforting.That's something I would like to do as well. I have kids and would not be able to get them out of school for the entire lengthening duration. Dr. Paley told me that PT is one of the most important aspects of this process. How are you managing this at home? Is you therapist familiar with LL and did you have to tell the therapist about your leg lengthening procedure? Keep us updated...Good luck!
Just so I can understand, is your child doing this surgery for a deformity, and you're doing it for cosmetic? If so, I really suggest against both of you getting the surgery at the same time, since it will be almost impossible for you to care for them.
PT is 100% the most important aspect to LL. In the beginning, I didn't feel too much tightness, but now at 4 cm I feel the tightness more than ever. My legs are becoming more difficult to get full extension, I feel my quad cramping while standing, light nerve pain in my right tibia, and I have a tight hip (fascia lata) that makes it difficult to close my legs when standing and is also causing my knees to bend slightly inwards. I'll elaborate on all these problems and what's happened with PT in my update :)
So are you not in FL at all anymore? If you are let me know, I'd be interesting in meeting since I'll probably be crazy after a couple weeks of isolation.
Don't worry, you'll have lengthener friends, but this is important- try to leave your room as much as you can! Even when you're on a laptop, just take it out into the dining area where it's sunny and across from the pool. There will be people around and it will just make you feel better. My dark lonely room was probably the source of my depressed feelings while in Florida...
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Here's my x-ray from this Monday:
(http://i.imgur.com/OhyJOWQl.jpg?1)
3.7 cm in the image. Dr. Paley saw it, checked my flexibility, and gave me the the thumbs up. ;D Looks like lengthening at home hasn't given me any complications (but I won't get ahead of myself yet, I'm only at 4 cm now.. halfway there!)
I'm lengthening at home which means I need to fly back to Florida at least every 2 weeks to see Dr. Paley for our follow-up and have x-rays taken. I did this roundtrip to Florida in one day. :o
This time, flying was much more uncomfortable for me. My flight each way was only 2 hours long and 30 minutes long, but my first flight was delayed on the tarmac for 2 hours, so I ended up spending the first flight sitting down for almost 5 hours. During the flight, I started getting an annoying nerve pain in my right tibia, which doesn't hurt so much. It feels more like a muscle soreness/pinching sensation that you need to stretch out. Mid-flight, I took out my blanket that I use to stretch and did my tibia nerve stretches. It relieved some pain, but I started experiencing a real worse pain, which is my hips.
From day 1 since surgery, I've had swollen hips which are very sensitive. I can't sleep on my side because my hips experience too much pain from this. I was told (by a PA) it would only last a week but 42 days later, I still have very bad hip pain when sitting down. At my follow-up, I talked to Paley about it and he pointed at my x-rays and explained, "you're very skinny. Those screws are sticking out and pushing into your muscle, which is causing the swelling and pain. A lot of people complain about this problem, but it will eventually go away." The explanation sufficed for me, but it leads to another problem I'm having.
I have trouble closing my legs while standing and it almost feels like my hips tighten up and prevent me from closing them. I also noticed my left foot was slightly turning inwards. I mentioned this to Dr. Paley and he immediately said, "tight fascia lata. It's the tendon located right in your hip that will cause this when it gets tight. The solution for this is to do the OBER stretch." I groaned. The Ober stretch is the bane of my existence. The reason why? The Ober stretch requires you to lie on your side. This induces HUGE amounts of pain because of the screws popping into my muscle and having the Physical therapist force more pressure down on this area while stretching me. I almost can't do this stretch because of how painful it is, and it's probably why this area has been tightening up for me. I explained why I'm having trouble doing it and Paley suggested soft pads, which I've tried, but haven't done much for me. So mostly I have to suck it up, take some more pain meds before PT, and do the Ober stretches at least 3x everyday.
Paley was satisfied with my flexibility when he saw me, but I'm not happy with it, and there's a reason why- my PT has been lacking severely.
When I moved back home from Florida, I already had plans to do PT with a place that obviously didn't have any experience with LL, but was good with fractures and other injuries. It was also very cheap for 1 hour and 15-30 minutes, only $40 out of pocket. What I didn't realize was that the PTs were too incompetent to use the videos my PTs from Paley's clinic provided me, and wanted to do the stretches the way they were familiar with. They also didn't do 1-on-1 PT (which you NEED) and instead would give me the stretches to do by myself, and leave me while I did them. Why the hell would I go to a place and pay them for I can do at home!? I only went to this place twice and never returned.
So after ditching this place, I continued to do PT on my own, but only self-stretches, and sometimes a family member would help me. Stretching yourself, while I was taught on all the stretches to do, is difficult and not nearly as productive as having someone else stretch you. The reason? You don't want to inflict pain on yourself, so you go easy while stretching. It's also difficult in some positions to push harder when you're in so much pain. I spent the last week looking for someone, and finally found a PT for 1-on-1. They understand that they need to do everything I say, and what my PTs in Florida say. The biggest stretches we're focusing on are Ober, hamstring, quad, and the stretch for the sciatic nerve running down my tibia (which is pretty easy to do by myself as well).
Besides all the complaining I've done in this post, I have to say I'm happier than I've ever been during my lengthening. :) Being at home with my family has made LL so much better. Not a day goes by where I'm not actively moving about and doing something, and talking to someone and keeping busy. The days have passed by much quicker this way. I'm a musician, and have already joined a new band to practice and gig with. I'm swimming in my pool almost every day, playing with my pets in our yard, and I've already seen a few friends (I just told them I had a sporting accident and broke my leg, no one questioned it). Also none of them noticed my height because I'm slightly hunched on crutches and also they're much taller than me, so they wouldn't even notice if I grew a few inches.
I'm on crutches now and they are the fastest and best way of getting about for me. It's much quicker than using a walker. But be careful- if you're on a slippery surface your crutch WILL slip. Almost fell down after using my crutches on a wet floor.
Halfway there, I can almost see the finish line! I'm pleased with my 4 cm so far.. and have already felt average while standing in a lot of places. But I'm a bit greedy, and I want my 8 cm. ;D I'll probably even try my 3 inch lifts after consolidation just to experience what it's like at 6'.. ;)
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You go for it man! Glad you are feeling better about everything. Pity about the PT though, that is certainly one perk of staying in FL.
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Man I know what you mean about physio, some stretches just suck. And I have noticed that even though I do physio on my own I don't seem to get as much pain as when the physiotherapists at the hospital were there instructing me and making sure I did the movements properly. Maybe it is a subconscious way of holding myself back. That's cool you're home and with friends and all. I don't think I could do those constant flights though. Isn't going through security at the airports discouraging enough? lol From the pain you describe I kind of wonder how much less painful internal methods really are compared to external. Then again, maybe external femurs would be a million times worse.
By the way, how long can you walk with crutches typically before you start to feel tired? I get sapped of energy every time I make a trip to the front desk and back to my room in the hotel. Takes forever on the walker.
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Just so I can understand, is your child doing this surgery for a deformity, and you're doing it for cosmetic? If so, I really suggest against both of you getting the surgery at the same time, since it will be almost impossible for you to care for them.
Yes BD, my daughter has been Paley's patient for a while. (I can't believe I just learned about cosmetic lengthening!!!)She has a couple more surgeries and a few more years to go before she is done. I am keen to get this done for me ASAP because I want to enjoy my height and complete this surgery before I get any older. (I will be 30 this year) The main reason I want to complete my lengthening at home is because I can get a lot of help, my family would all be able to pitch in and help out.
Thanks for your updates, BD. I always learn so much from them.
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BD,
Any updates. How is your pain? How is walking with crutches? Are you able to sleep ok at night?
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So you get everyone to tune in for your diary after six months of advertising, just to leave everyone hanging once you do the surgery? So much for becoming a second Leechlet
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Hey BD any updates
How have you been?
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How much did it cost?
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HI All,
I'm new to this forum ,
My daughter (15.5) had the precice 2 operation a week ago in her right femur , due to length discrepancy .
one of he PT exercises given was , to bear a wight of 20KG on the operated leg .
once she does this PT , she complains about feeling movements in the leg , did anyone experiences anything like it
10x,
Sagi
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Haven't posted on these forums in a long, long time...
If you have any questions for an LLer who is now over 4 years post-op (holy sh*t! It's been forever ago) feel free to ask away!
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Haven't posted on these forums in a long, long time...
If you have any questions for an LLer who is now over 4 years post-op (holy sh*t! It's been forever ago) feel free to ask away!
Hey man, I'm turning 21 soon and I've been planning and saving since I was 17. I hope you don't mind this wall of questions, but seeing as we're getting it done at a similar age (and not to many people do) I have a lot to ask.
- Can you go hiking? Go to festivals? Walk for a full day at theme parks? Do you feel leg pain?
- Do you feel like getting this done at a young age helped your career, your business and professional relationships?
- What is your parent's opinion of the surgery now 4 years later? More approving? Assuming you've become a happier, better version of yourself?
- Have you ever had anyone comment about your proportions, or ever felt weird about looking in the mirror or putting on certain clothes?
- Do you remember what it was like to be short? What does it feel like? A nightmare in comparison? Not that different? etc...
- What has been the biggest difference in your life since you had LL? Do you feel like it impacted your personality drastically, your social life, your romantic life?
- Given the result and recovery, was it worth the cost, or would you go for a cheaper alternative (being young and having that kind of money can really lead to some great long-term investments).
- Do you still think about lengthening more on your tibias?
You don't have to answer everything point by point, or even answer all of them at all. Just any information you can give would be greatly appreciated. Thanks!
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Haven't posted on these forums in a long, long time...
If you have any questions for an LLer who is now over 4 years post-op (holy sh*t! It's been forever ago) feel free to ask away!
I wonder if it's true that veteran LLers reach the point where they forget they did CLL?
knowing what you know now, Will you do LL again?
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Hey man, I'm turning 21 soon and I've been planning and saving since I was 17. I hope you don't mind this wall of questions, but seeing as we're getting it done at a similar age (and not to many people do) I have a lot to ask.
- Can you go hiking? Go to festivals? Walk for a full day at theme parks? Do you feel leg pain?
- Do you feel like getting this done at a young age helped your career, your business and professional relationships?
- What is your parent's opinion of the surgery now 4 years later? More approving? Assuming you've become a happier, better version of yourself?
- Have you ever had anyone comment about your proportions, or ever felt weird about looking in the mirror or putting on certain clothes?
- Do you remember what it was like to be short? What does it feel like? A nightmare in comparison? Not that different? etc...
- What has been the biggest difference in your life since you had LL? Do you feel like it impacted your personality drastically, your social life, your romantic life?
- Given the result and recovery, was it worth the cost, or would you go for a cheaper alternative (being young and having that kind of money can really lead to some great long-term investments).
- Do you still think about lengthening more on your tibias?
You don't have to answer everything point by point, or even answer all of them at all. Just any information you can give would be greatly appreciated. Thanks!
Whoo, bunch of questions! I'll go through them one by one.
>- Can you go hiking? Go to festivals? Walk for a full day at theme parks? Do you feel leg pain?
This question made me chuckle, just because I would have had the same ones at your stage in life. :)
The answer is yes to doing all of those. I don't feel leg pain and the only time I do is minor when I have been running fast for a long distance (without previously running for a while.) Almost like a "getting used to it" sort of pain.
>- Do you feel like getting this done at a young age helped your career, your business and professional relationships?
This is a good question, and again one I have had the same before doing LL at your age. It's hard to say. I know as a fact it has helped in my romantic life, and overall my confidence, so you could say by that token it has helped me in my work life. Being more confident will assist you in all areas of your social, career, and personal life.
> What is your parent's opinion of the surgery now 4 years later? More approving? Assuming you've become a happier, better version of yourself?
We don't talk about it. We almost pretend as though it hasn't happened. Which in a way, is pretty easy to feel because all of us have moved on from it. It's almost a non-factor because it doesn't play into our daily lives whatsoever.
To add to this though, this surgery and plastic surgery in general is incredibly out of the realm of ordinary for my family. Doing it might hang over my head a bit, but I don't pay much attention to it which in turn causes my family not to care about it either I believe.
>- Have you ever had anyone comment about your proportions, or ever felt weird about looking in the mirror or putting on certain clothes?
Never. No one has ever commented about my proportions. I do not feel weird looking in the mirror or putting on clothes HOWEVER; I do feel weird about tucking in shirts. My torso is way too short and my legs are way too long to be tucking in shirts. The only time I feel comfortable doing that is when I'm wearing a suit jacket along with it.
>- Do you remember what it was like to be short? What does it feel like? A nightmare in comparison? Not that different? etc...
Absolutely. Life sucked. I was uncomfortable in my skin and being unconfident hurt every area of my life. I'm still not entirely content in my skin, but I'm a lot happier than I used to be. Being short is not a nightmare in comparison but it is definitely worse.
>-What has been the biggest difference in your life since you had LL? Do you feel like it impacted your personality drastically, your social life, your romantic life?
This is a tough one to answer. For anyone reading this, I only went from around 5' 5" to 5' 8". That's not a tall height for anyone, but for me, it changed my world. I feel 'average' instead of feeling short for once. I felt like I no longer had to be "embarrassed" of my height.
My social life remained relatively unaffected but my romantic life has been a world apart. To put it bluntly, I pull a lot more girls than I would have 4 years ago. However, a year after surgery, I wasn't pulling any girls at all. It was only until a few years later when I was able to mesh a personality with my looks that would enable me to amplify my romantic life.
>- Given the result and recovery, was it worth the cost, or would you go for a cheaper alternative (being young and having that kind of money can really lead to some great long-term investments).
This is an interesting question. I still have money, and I still enjoy having money. But I have a much different perspective on money than I used to.
Back then, I saw money as something that you needed to invest/save at all costs. Now I view money as, well, why not spend it now? What I care about, what we readers on this forum care about, is being happy and content with ourselves now. And if it costs 100K to do it, and you have the money, then why not?
Would I go for a cheaper alternative? I can't say yes given my experience that 1) I am not dead and 2) still able to walk, but I wouldn't mind having an extra ~50K in my pocket.
>- Do you still think about lengthening more on your tibias?
This is probably why I've come back to the forum.
I do consider it on occasion (rarely, and I do not obsess over height like I used to. In some respects, I stopped caring altogether and enjoy being this height). But I would like to have an extra 1" or 2 inches MAX. It feels like that would compliment my overall proportions well without being too crazy tall.
However, I'm 99% sure that I won't be doing the surgery. And the reason? Nothing to do with money/pain/lifestyle change.. actually, tibias are easier to lengthen than the femurs with precice. What I am worried about is a very cosmetic reason, and that is the SCARS. I have extremely noticeable keloid scars from the femur lengthening. And it's quite embarrassing and makes me uncomfortable to take even my shorts off around people. The release surgery left the largest and most noticeable scars next to my left and right knee which is very visible when I'm wearing shorts.
Unfortunately it's impossible to remove keloid scars so until it's possible to do so, I probably won't be lengthening my tibias...
Thanks for all those questions! It feels good to write my thoughts out which I haven't done in quite a while.
I wonder if it's true that veteran LLers reach the point where they forget they did CLL?
knowing what you know now, Will you do LL again?
It's not necessarily that we forget that we did CLL. It's more that we realize there isn't much to gain by reading these forums and posting on them anymore.
Everyone (myself included) highly active on these forums usually have not done LL yet or were in the process of getting it done. Before surgery, there is a lot of nervous excitement and of course anxiety about getting a surgery as drastic as this one. But once you get the surgery done, what is left for there to be said? You realize coming to these forums to vent about your experience is pretty much the extent of what you can gain from posting here. The best thing you can do for your mental health and happiness moving forward is to entirely forget about LL and focus on the other areas of life that you were neglecting or putting aside because of your unhappiness with your current stature.
To answer your last question, would I do LL again given what I know now? 110% yes.
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what is the 'release surgery' you mentioned in your post?
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When could you walk normally again, completly without any aids. (Normally = full mobility and nobody notice/suspect anything that you had surgery)
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Hi BD, I can't thank you enough for all your answers man. That was extremely re-assuring and calmed down a lot of my minor doubts about getting this done. Yeah dude, 5'5->5'8 is huge! That's literally 5th percentile to like the ~30s, that's essentially standing in a crowd of people and feeling shorter than literally almost everyone, to being taller than 1 / 3 guys, I can't imagine the psychological impact that has.
Also, it's good to hear you only feel like you need 1-2 inches maximum on tibias if you were go around again. The fact that you're only aiming for 1-2 speaks volumes about the huge difference that only 3 inches has already made in your life, and it's what my long-term plan probably is to. 3 inches on femurs, recover well after a few years, and if I still feel like I need it, maybe go back for an inch on my tibias.
Once again, thank you so much. It's really rare to get these kind of post-LL answers from people because as soon as they're done lengthening they usually stop updating entirely and you never find out if they truly fully recovered, if their mental hood was improved, etc.. etc.. So I really appreciate you taking the time to answer all of those questions.
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Good to know you're doing well, dude.
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This is a tough one to answer. For anyone reading this, I only went from around 5' 5" to 5' 8". That's not a tall height for anyone, but for me, it changed my world. I feel 'average' instead of feeling short for once. I felt like I no longer had to be "embarrassed" of my height.
Totally agree. I went from 166 to 173/174 (I don't measure myself anymore, but I'm usually like 5'8.25" at night), and it's a massive difference. Every inch between 5'5" and 5'8" is very important. I honestly have no issues at my height now, especially since I (and it sounds like this applies to you as well) have other things like build, facial aesthetics, success, etc. going for me.
No way in hell I would put myself through this sh*t again even if someone paid for it.
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I did not expect to find the Paley patient who actually got fat embolism.. this diary needs to be pinned. And this diary is very detailed, should've gotten way more traction.
BilateralDamage is one of two Paley patients who got fat embolism from LL. Imagine he did this in India or something instead of the US. Definitely going to Paley now, no more trying to save money.
Sorry for bumping a 6 year old diary, but this is a short, but must read
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15 percent knee pain wtf
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I need to bookmark this shìt lol. Forgot this diary. Really good one.
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Hi BilateralDamage,
Thanks for sharing. I want to ask how are you athletically. That has been something I am worried about with this procedure and I want to know what percentage of pre-CLL are you back to? Thanks.