Bilateral Femur with Dr. Paley 11/2022

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Hope u recover well!
Waiting for your further update.

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Glad to hear you're doing well! When did you finish lengthening? Just curious how long it's been.
You mentioned that you're walking a bit with the walker. Did you start doing that recently or you were allowed to do that throughout lengthening as well?

And how's your muscles/tightness? Did it improve significantly since you finished?

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Quote from: hippo60 on April 11, 2023, 06:11:08 PMGlad to hear you're doing well! When did you finish lengthening? Just curious how long it's been.
You mentioned that you're walking a bit with the walker. Did you start doing that recently or you were allowed to do that throughout lengthening as well?

And how's your muscles/tightness? Did it improve significantly since you finished?

Thanks! I finished lengthening late Feb 2023. It's been about 1.5 months. Everyone I know started walking by between 2 to 3 months, so I am expecting to be able to walk before June.

Now that is "walking" independently without a walker. If you are referring to moving around with a walker, I've been able to do that without any problem like 10 days post-op. I wouldn't call that walking though, more like hopping - you push the walker forward, then hop forward a step, and repeat, while in the whole process keeping a big part of your weight on your arms so that your legs bear less than what the nails can tolerate at max (for me it is 150 lbs). You have to keep both legs on the ground at the same time otherwise you are risking overloading one leg (it is 75lbs per leg). 

My muscle tightness has been pretty good throughout lengthening, especially later in the lengthening process. This varies wildly between individuals. I've met a few people who said it gets easier after 6 cm and a few other people who said completely opposite. I don't feel any tightness at all after done lenghtening. If I have to graph it on a scale of 10 with 10 being the tightest, it would be 0 (immediately post-op) -> 2 (0-2 cm) -> 5-6 (3-5cm) ->  4 (6-8cm) -> 0 (1 month after lengthening).

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Quote from: erenyeager1 on April 11, 2023, 08:37:04 PMThanks! I finished lengthening late Feb 2023. It's been about 1.5 months. Everyone I know started walking by between 2 to 3 months, so I am expecting to be able to walk before June.

Now that is "walking" independently without a walker. If you are referring to moving around with a walker, I've been able to do that without any problem like 10 days post-op. I wouldn't call that walking though, more like hopping - you push the walker forward, then hop forward a step, and repeat, while in the whole process keeping a big part of your weight on your arms so that your legs bear less than what the nails can tolerate at max (for me it is 150 lbs). You have to keep both legs on the ground at the same time otherwise you are risking overloading one leg (it is 75lbs per leg). 

My muscle tightness has been pretty good throughout lengthening, especially later in the lengthening process. This varies wildly between individuals. I've met a few people who said it gets easier after 6 cm and a few other people who said completely opposite. I don't feel any tightness at all after done lenghtening. If I have to graph it on a scale of 10 with 10 being the tightest, it would be 0 (immediately post-op) -> 2 (0-2 cm) -> 5-6 (3-5cm) ->  4 (6-8cm) -> 0 (1 month after lengthening).


By walking I mean walking with a walker beyond the 10 steps in your apartment, I'm talking about going outside with a walker and walking for 10 minutes (or 15, or 30, you get my point). Can you do that already? Or you're not allowed?

As for the muscle tightness - that's pretty insane! Good for you!
But just to be clear, 0 for 1 month post lengthening means that you went back to same level of flexibility pre surgery?

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Quote from: hippo60 on April 12, 2023, 12:20:40 AM
By walking I mean walking with a walker beyond the 10 steps in your apartment, I'm talking about going outside with a walker and walking for 10 minutes (or 15, or 30, you get my point). Can you do that already? Or you're not allowed?

As for the muscle tightness - that's pretty insane! Good for you!
But just to be clear, 0 for 1 month post lengthening means that you went back to same level of flexibility pre surgery?

Yeah I can walk reasonably far like 300 meters in one go no problem. Then I'd have to sit down for a while. The limiting factor is not my legs, but my upper body strength as well as my weight, because each step forward I am essentially doing a dip, pushing myself off the ground with my arms. That is very exhausting for my arms and shoulders. My legs are fine and honestly not doing much work. I had my friends trying that and they can't get as far as I can because I've been moving this way for a few months now, and my upper body has got much stronger. Check out this video and you will get what I mean: In the video she has only 1 leg on the ground, but for bilateral lengthening you would want both legs on the group to distribute your body weight equally.

Yeah I wasn't that flexible pre-surgery anyways. I feel I am at the same level of flexibility but never have it measured by anyone, at least no difference for day to day activities. I can bend my legs and straighten my legs just fine as pre-surgery.

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Quote from: erenyeager1 on April 12, 2023, 02:17:25 AMYeah I can walk reasonably far like 300 meters in one go no problem. Then I'd have to sit down for a while. The limiting factor is not my legs, but my upper body strength as well as my weight, because each step forward I am essentially doing a dip, pushing myself off the ground with my arms. That is very exhausting for my arms and shoulders. My legs are fine and honestly not doing much work. I had my friends trying that and they can't get as far as I can because I've been moving this way for a few months now, and my upper body has got much stronger. Check out this video and you will get what I mean: In the video she has only 1 leg on the ground, but for bilateral lengthening you would want both legs on the group to distribute your body weight equally.

So I guess that's my question. I understand why you have to walk like that during lengthening, but now that you're 1 month into consolidation you can't walk "normally" with a walker? That 2-3 months timeline to walk normally resonates with me but there are a couple of steps from where you are to that point (beyond just bone consolidation) and I'm quite confused regarding when they're going to happen.

I also forgot to ask earlier - how the hell did you get to 8.2?
The device doesn't stop at 8cm??

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I got a few questions in my inbox that I will answer here so everyone can see them.

(1) I want to ask you about choosing a physician. I have considered several physicians, including Dr. Paley, Dr. Donghoon Lee, and Dr. Assayag. I have emailed each of them, and they all claim to be very safe, with no patient deaths, no non-unions, and patients can recover as long as they follow the physician's instructions. I want to believe them, but I feel that I cannot fully trust them. You once said that you spent several years collecting information; what advice do you have for choosing a physician?

I personally wouldn't do it anywhere else, especially given that I live in the US. Usually people choose other doctors because they are cheaper, but I find it irresponsible for yourself to save money for a higher health risk. If you don't have the money, don't do it, or do it later when you have enough saved up. There usually is a reason for cheaper price. For example, what I've heard is that the vegas doctor only gives you like a week of PT and then you need to do exercises on your own or find your own PT. I've heard other things about his place. People would think that putting the nails in is the biggest part while it is not like that. If everything goes well, then you probably be fine anywhere you do it, but if things don't go as planned, I don't see anywhere would even be close what Paley offers. Other than Paley, I considered a doctor in LA, Dr. M (forgot his full name), but too few data points (diaries) that I can find about him. I eventually went with Paley.

If you are really not sure, go visit their place. I wasn't so sure about doing this surgery at all until I paid a visit almost 2 years ago now.

Also on collecting information, I did these things that you can do too - read all diaries on this forum about the places you want to do the surgery at, read the doctor's papers, and talk to people who've done it there.

(2) After experiencing the painful lengthening and consolidation process, has there been a time when you regretted it, during the months when you couldn't walk normally and had to rely on others? Did the psychological and mental stress cause you to regret your decision?

Other than the first two weeks post-op, I wouldn't say it is that painful, especailly the consolidation process. Most people can be fully independent by 1 month post-op, so I didn't really have to rely on others. I never regretted my decision. What helped me a lot is that I have a lot of people to talk to about this surgery. Everyone around me knows that I am doing this surgery. I know it is not the case for everyone, but at least have one person you can talk to freely about what you are going through. Get a counsellor or something like that.

(3) Among your CLL friends at the Paley Institute, were there any cases where the surgery did not go smoothly or the recovery was poor? I want to be prepared for the worst-case scenario.

I've heard stories of people had such bad nerve pain that even taking 9 gabas a day wasn't helping much, but that's rare. I've never met anyone who had non-union or premature-consolidation or bent nails or anything crazy. This doesn't mean they don't happen, but they are very rare. I only hear of these nightmare experiences from PTs who've been here for like a decade, and they've probably seen very few of these cases.

(4) Do you think stretching and even practicing yoga should be started a year before surgery? Should lower body weight training be avoided, as having too much muscle might not be good?

Lower body weight definitely helps. Having a stronger upper body helps as I said in the last post that moving around with a walker requires good upper body strength, but you don't want to be like hulk level upper body cause you want to prioritize lower body weight. It would help a lot if you can maintain a <150 lbs weight. I weighed almost 200 lbs going into the surgery and was always very careful because my nails are only 150lbs weight bearing.

Getting into the habit of stretching helps, but stretching itself may not help that much, you get what I am saying here.

(5) If time is not an issue, how long would you recommend staying in WPB?

Get there like 3 days before the surgery day to prep your hotel room. 7 days after surgery you start lengthing. Then every 1 day for every 1mm you are targeting. At last, give a week after you've done lengthening to do some final adjustments and some time for packing and leaving. So if you want to length x cm, stay there for (10x+17) days at least.

(6) Various complications are what make me hesitate the most, including the most feared FE and PE. How does Dr. Paley prevent these situations from happening? How does he avoid permanent nerve damage? What does he do to prevent non-unions? I once watched Dr. Lee's YouTube video where he said that a physician's surgical technique and experience could greatly reduce the chance of non-unions.

Paley has some technique to prevent it but he will tell you very clearly that the chance is not 0. Not smoking is probably the most critical here. I understand you have this fear. I had the same fear too. The stats at Paley is about 2 in 400 cases that had bad PE and ended up in ICU, where he told me that he was very stressed about them not making it but eventually they all made it okay. You may find it ridiculous but some people do lie to the doctor about smoking so they can do the surgery. Some even smoke weed in their hotel rooms during lengthening.

Avoiding nerve damage is by controlling the rate of lengthening. For femurs, 1mm a day is usually safe, if nerve pain out of control then lower to 0.75mm per day. I don't know much about non-union. It was never on my mind. The patients I knew also didn't really have that on their mind. It is very rare for sure. Day to day you will worry most about nerve pain and muscle tightness.

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Quote from: hippo60 on April 12, 2023, 02:32:54 AMSo I guess that's my question. I understand why you have to walk like that during lengthening, but now that you're 1 month into consolidation you can't walk "normally" with a walker? That 2-3 months timeline to walk normally resonates with me but there are a couple of steps from where you are to that point (beyond just bone consolidation) and I'm quite confused regarding when they're going to happen.

I also forgot to ask earlier - how the hell did you get to 8.2?
The device doesn't stop at 8cm??

The nails physically can't not go beyond 8 cm, but the software doesn't have a limit. The number on the lengthening machine is just for your tracking purpose. It is not the exact number of how many cms you've lengthened, though in an ideal world they should match.

I think in the final few weeks for a few turns the device was glitched or something so the software said I lengthened but in reality my nail didn't lengthen. That's also why they have you do bi-weekly xray so that they can fix this kind of issue. So when the software says 8 cm, my nails are probably at somewhere between 7.4 to 7.6 cm (estimated from my xrays), so I had them raise the software limit to 8.5 cm so I can do a few more turns to get to 8 cm. At the end I was very close to 8 cm like 7.8 or 7.9 cm (says 8.2 cm on the lengthening device), but I am very happy with what I've got and don't want to rebook my flights and unpack everything.

For walking, it is more a 0 and 1 difference. You are either 0 or 1. There is no 0.6 where you can say only walk for 10 minutes. Maybe there is a 0.5 where you can use a pair of crutches to walk instead of having to use a walker.

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Quote from: erenyeager1 on April 12, 2023, 02:55:10 AMI got a few questions in my inbox that I will answer here so everyone can see them.

(1) I want to ask you about choosing a physician. I have considered several physicians, including Dr. Paley, Dr. Donghoon Lee, and Dr. Assayag. I have emailed each of them, and they all claim to be very safe, with no patient deaths, no non-unions, and patients can recover as long as they follow the physician's instructions. I want to believe them, but I feel that I cannot fully trust them. You once said that you spent several years collecting information; what advice do you have for choosing a physician?

I personally wouldn't do it anywhere else, especially given that I live in the US. Usually people choose other doctors because they are cheaper, but I find it irresponsible for yourself to save money for a higher health risk. If you don't have the money, don't do it, or do it later when you have enough saved up. There usually is a reason for cheaper price. For example, what I've heard is that the vegas doctor only gives you like a week of PT and then you need to do exercises on your own or find your own PT. I've heard other things about his place. People would think that putting the nails in is the biggest part while it is not like that. If everything goes well, then you probably be fine anywhere you do it, but if things don't go as planned, I don't see anywhere would even be close what Paley offers. Other than Paley, I considered a doctor in LA, Dr. M (forgot his full name), but too few data points (diaries) that I can find about him. I eventually went with Paley.

If you are really not sure, go visit their place. I wasn't so sure about doing this surgery at all until I paid a visit almost 2 years ago now.

Also on collecting information, I did these things that you can do too - read all diaries on this forum about the places you want to do the surgery at, read the doctor's papers, and talk to people who've done it there.

(2) After experiencing the painful lengthening and consolidation process, has there been a time when you regretted it, during the months when you couldn't walk normally and had to rely on others? Did the psychological and mental stress cause you to regret your decision?

Other than the first two weeks post-op, I wouldn't say it is that painful, especailly the consolidation process. Most people can be fully independent by 1 month post-op, so I didn't really have to rely on others. I never regretted my decision. What helped me a lot is that I have a lot of people to talk to about this surgery. Everyone around me knows that I am doing this surgery. I know it is not the case for everyone, but at least have one person you can talk to freely about what you are going through. Get a counsellor or something like that.

(3) Among your CLL friends at the Paley Institute, were there any cases where the surgery did not go smoothly or the recovery was poor? I want to be prepared for the worst-case scenario.

I've heard stories of people had such bad nerve pain that even taking 9 gabas a day wasn't helping much, but that's rare. I've never met anyone who had non-union or premature-consolidation or bent nails or anything crazy. This doesn't mean they don't happen, but they are very rare. I only hear of these nightmare experiences from PTs who've been here for like a decade, and they've probably seen very few of these cases.

(4) Do you think stretching and even practicing yoga should be started a year before surgery? Should lower body weight training be avoided, as having too much muscle might not be good?

Lower body weight definitely helps. Having a stronger upper body helps as I said in the last post that moving around with a walker requires good upper body strength, but you don't want to be like hulk level upper body cause you want to prioritize lower body weight. It would help a lot if you can maintain a <150 lbs weight. I weighed almost 200 lbs going into the surgery and was always very careful because my nails are only 150lbs weight bearing.

Getting into the habit of stretching helps, but stretching itself may not help that much, you get what I am saying here.

(5) If time is not an issue, how long would you recommend staying in WPB?

Get there like 3 days before the surgery day to prep your hotel room. 7 days after surgery you start lengthing. Then every 1 day for every 1mm you are targeting. At last, give a week after you've done lengthening to do some final adjustments and some time for packing and leaving. So if you want to length x cm, stay there for (10x+17) days at least.

(6) Various complications are what make me hesitate the most, including the most feared FE and PE. How does Dr. Paley prevent these situations from happening? How does he avoid permanent nerve damage? What does he do to prevent non-unions? I once watched Dr. Lee's YouTube video where he said that a physician's surgical technique and experience could greatly reduce the chance of non-unions.

Paley has some technique to prevent it but he will tell you very clearly that the chance is not 0. Not smoking is probably the most critical here. I understand you have this fear. I had the same fear too. The stats at Paley is about 2 in 400 cases that had bad PE and ended up in ICU, where he told me that he was very stressed about them not making it but eventually they all made it okay. You may find it ridiculous but some people do lie to the doctor about smoking so they can do the surgery. Some even smoke weed in their hotel rooms during lengthening.

Avoiding nerve damage is by controlling the rate of lengthening. For femurs, 1mm a day is usually safe, if nerve pain out of control then lower to 0.75mm per day. I don't know much about non-union. It was never on my mind. The patients I knew also didn't really have that on their mind. It is very rare for sure. Day to day you will worry most about nerve pain and muscle tightness.
U explain thoroughly. It helps me a lot! Keep to update your recovery progress. Hope to see u fully recover.

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Quote from: erenyeager1 on April 12, 2023, 03:05:32 AMI think in the final few weeks for a few turns the device was glitched or something so the software said I lengthened but in reality my nail didn't lengthen. That's also why they have you do bi-weekly xray so that they can fix this kind of issue. So when the software says 8 cm, my nails are probably at somewhere between 7.4 to 7.6 cm (estimated from my xrays), so I had them raise the software limit to 8.5 cm so I can do a few more turns to get to 8 cm. At the end I was very close to 8 cm like 7.8 or 7.9 cm (says 8.2 cm on the lengthening device), but I am very happy with what I've got and don't want to rebook my flights and unpack everything.
That's very strange, but I'm glad you're satisfied with the result. My x-rays did match the device (to the best of their ability to measure it) and I was told it should be accurate.

Quote from: erenyeager1 on April 12, 2023, 03:05:32 AMFor walking, it is more a 0 and 1 difference. You are either 0 or 1. There is no 0.6 where you can say only walk for 10 minutes. Maybe there is a 0.5 where you can use a pair of crutches to walk instead of having to use a walker.

I'm not sure why you make it binary, that's clearly not the case. You can't go from sitting in a wheelchair for months to walking normally immediately, right? You'll need time to improve your gait and build muscle. That's what I meant by walking 10 minutes, not that you can't weight-bear for longer, but that your muscles are the limiting factor.