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[Ismail6024]

How much stretching and exercises do you have to do in your own time after having the therapist perform your daily sessions?

[the188cmdream]

Hi stretched! When I woke up after surgery, because the anesthesia is still there, I didn’t feel any pain, just legs are heavy. Then anesthesia goes away in a few hours maybe a day. Then they give you oxycodone 5mg every 8 hours or so for a few days. The pain level was low like 2 for the first 2 days. Then it starts to go higher to like 4-5 for last two days in the hospital mostly because they stop giving me oxycodone and switched to a different pain killer. From time to time there is like a 1-sec level 7-8 pain, but that’s like once an hour or so. The surgical pain remained like this for two weeks, then it slowly goes away. For most people, the surgical pain should be gone in around 3 weeks. Looking back, the pain wasn’t that bad. It was manageable for 99% the time, and most people have similar experience. Apparently, tibia hurts less than femur for most people. I didn’t do tibia but I talked to a few who did both femur and tibia, and they say that the pain after femur surgery is much worse than that of the tibia surgery.

After surgical pain is gone, you probably have already lengthened like 1.x cm. Soon, depends on your flexibility, you are going to get muscle tightness. Then some people get nerve pain. If you get nerve pain, it’s probably going to stay for the entire lengthening period. The only way to delay or prevent this is by stretching religiously. It is a painful process too, but it’s a different kind of pain than the surgical pain. And this pain you can experience pre surgery. Just find a physical therapist and ask them to stretch you real hard. As of now for me, 5 weeks post op, I feel 0-1 pain for the most part. The only pain in my life is when I do stretches. Hopefully I don’t get nerve pain. Most people get it between 2 to 6 cm lengthened, but I’ve met a few who never got it, but they are either very flexible to begin with or stretched really hard.

Also my overall energy level was low until recently, like the first few weeks I am always super tired everyday. It slowly gets better as time goes on.

Do you think I can do remote software engineering work or is it impossible to get into the right mindset following surgery?

[erenyeager1]

So in 2 weeks you gained 1cm.

2cm/month x 4 months = your 8cm goal

Is this correct?

The first week after surgery you don’t lengthen. In surgery they put 1 mm to test the rods. So you have 79 mm to go. Usually you lengthen 1mm every day. So that’s 7+79=86 days. Usually people stay for one more week afterwards for extra PT and to see the doctor for X ray one more time, so I’d say around 93 days is a good estimate, a little over 3 months.

[TheDream]

Do you think I can do remote software engineering work or is it impossible to get into the right mindset following surgery?

Probably not full time 37 hours/week but maybe something like 10-15 hours/week.

[TheDream]

Erenyeager have you heard any rumors of new LL technology while at Paley’s?
His group tend to be very advanced and come up with new methods. I remember Paley talking in an interview on YouTube about a device that could lengthen more slowly but over an entire day instead of in jumps, but haven’t heard anything since.

[erenyeager1]

How much stretching and exercises do you have to do in your own time after having the therapist perform your daily sessions?

I try to do once before each turn (lengthening). So everyday I do 4 turns, each turn is 0.25 mm. Usually I do a turn after coming back from PT. So the rest 3 times I do it at home but it’s been difficult to do 3 recently since I start working. For each exercise, I just do whatever I do at the PT minus some moves so usually it’s 30-40 minutes each hotel session by myself, assisted by my dad. It is nice to have someone with you so the PT can teach them how to help you stretch at home, which can be more effective than stretching just by yourself.

Do you think I can do remote software engineering work or is it impossible to get into the right mindset following surgery?

Definitely not for the first 3 weeks post surgery. I probably could start working full time in week 4, but it was Christmas. Femur makes it difficult to sit down for a long time because your butt is gone and it’s quite uncomfortable to sit for a long time. I’ve been working full time for a few days now, and I know multiple other lengthening patients who do the same. Since my team is on the west coast, it lines up well - I go to PT in the morning and work from noon to 8 pm. I usually sit for an hour, stand up for a minute on the walker, then lie down for a few minutes. I also try to fit in 2 turns in my working time. It’s probably more difficult for me than other patients because I have a herniated disc at L5S1, but it wasn’t too bad. I even pulled an all-nighter writing grad school application yesterday🥲

[erenyeager1]

Erenyeager have you heard any rumors of new LL technology while at Paley’s?
His group tend to be very advanced and come up with new methods. I remember Paley talking in an interview on YouTube about a device that could lengthen more slowly but over an entire day instead of in jumps, but haven’t heard anything since.

Haven’t heard of anything. All the lengthening patients I know, including a few who just had surgery recently, have the precice 2.2 rods. I do see other lengthening devices like externals in PT but they are not for LL. The jumps (.25 mm turns) work fine for me. It’s never been painful, though slightly uncomfortable sometimes.

[Activatedxx]

Some advice is to get a professional physical therapist. 95% won’t do the proper technique and even if you know it, you will never push yourself as much as someone else doing it. My hamstrings got really tight during 7-8cm mark and it was terribly painful to straighten them out flat. My wife would do it but she would feel bad cause I’d be in pain. My PT I ended using (insurance covered) had zero regard for my feelings and made me tough it out. It sucked but if not for them I would have been stuck with a bent leg

[TheDream]

Haven’t heard of anything. All the lengthening patients I know, including a few who just had surgery recently, have the precice 2.2 rods. I do see other lengthening devices like externals in PT but they are not for LL. The jumps (.25 mm turns) work fine for me. It’s never been painful, though slightly uncomfortable sometimes.

I think the idea is that if you had a graph over the pressure exerted over time on the soft tissue from the current method you’d see jumps from the .25 mm steps, and then like a slow drop from the tissue lengthening. If one could control this rise in pressure from the lengthening in a continous manner then it could simulate the natural process better.

Anyway, thanks for your reply and best of luck with your journey. Wishing you good fortune, and you are in the best of hands so I’m sure you’ll do well.

[erenyeager1]

Some advice is to get a professional physical therapist. 95% won’t do the proper technique and even if you know it, you will never push yourself as much as someone else doing it. My hamstrings got really tight during 7-8cm mark and it was terribly painful to straighten them out flat. My wife would do it but she would feel bad cause I’d be in pain. My PT I ended using (insurance covered) had zero regard for my feelings and made me tough it out. It sucked but if not for them I would have been stuck with a bent leg

This is great advice. Once you get tight it is really difficult to do the stretches yourself. And you don’t want to put your families in a position where they may hurt you and feel really bad. I have been searching for PT down here in WPB but can’t find any that comes to the hotel room. I am still looking. Also deep tissue massage really helps. I had trouble finding one who comes to hotels too, but later a patient who was leaving referred me to a really good lady who I really liked. I do it once a week and it’s been good. If anyone who’s also in WPB needs her contact, feel free to DM me.

[erenyeager1]

I think the idea is that if you had a graph over the pressure exerted over time on the soft tissue from the current method you’d see jumps from the .25 mm steps, and then like a slow drop from the tissue lengthening. If one could control this rise in pressure from the lengthening in a continous manner then it could simulate the natural process better.

Anyway, thanks for your reply and best of luck with your journey. Wishing you good fortune, and you are in the best of hands so I’m sure you’ll do well.

It will be nice if they can make it work. It is annoying that once you do a turn you feel a little tighter. They probably are prioritizing weight bearing nails. That will make a big difference for the patients. The My life will be 95% normal if I am weight-bearing and can walk, though I did gain a lot of new perspectives when being disabled. Anyways, thanks for the good wishes and feel free to ask me any questions.

[erenyeager1]

Also, after moving 3 times, my advice for people coming to Paley for surgery is just stay in the Homewood suites. Unless you have at least two people with you and have a car, in which case you probably can consider Airbnb, staying at the homewood would be the easiest for you. You will also get to social and learn other people’s experience. People who do this surgery are really nice to each other and would be happy to go out of their way to give you good advice and support.

[the188cmdream]

Also, after moving 3 times, my advice for people coming to Paley for surgery is just stay in the Homewood suites. Unless you have at least two people with you and have a car, in which case you probably can consider Airbnb, staying at the homewood would be the easiest for you. You will also get to social and learn other people’s experience. People who do this surgery are really nice to each other and would be happy to go out of their way to give you good advice and support.

How much do you think it would cost (everything included) if you stay at the Homewood suite the whole time?

[erenyeager1]

The cost varies a lot depends on the time of the year. From late Dec to early April, it is peak season in palm beach and the price could be almost double that of the summer price. If you come here for winter, which I think is better because good weather and fewer lengthening patients, it will probably cost you about 15k for housing for 100 days.

[seattleperson]

i need the PT lady's contact , thank you!

[racecarworm]

Hey man! How are you doing?
I read your diary and heard that you liked winter sports. I also did precice 2.2 a while back, and am still athletic enough to hit black diamonds! I went skiing 2 weeks ago and my legs could handle it, although my knees & quads were really tight afterwards haha.

Also, stretch as much as you can, like seriously 2 hours+ everyday, my only regret was probably not stretching enough. The effort will save you from sooo much pain once you hit 5cm.

[erenyeager1]

i need the PT lady's contact , thank you!

Sent it to you via dm

Hey man! How are you doing?
I read your diary and heard that you liked winter sports. I also did precice 2.2 a while back, and am still athletic enough to hit black diamonds! I went skiing 2 weeks ago and my legs could handle it, although my knees & quads were really tight afterwards haha.

Also, stretch as much as you can, like seriously 2 hours+ everyday, my only regret was probably not stretching enough. The effort will save you from sooo much pain once you hit 5cm.

Hey man! Great to know that you were able to get back on snow! How long after surgery are you now? I was planning on getting on snow about a year after taking out the rods because I was worried that the new bones may be brittle with the rods in them.

Thanks for the advice! I need to do more stretches for sure. I am at 3.4 cm today and just got a first taste of nerve pain earlier today. It was like burning and the front of my left tibia can’t feel much, really numb. But it went away after an hour. It wasn’t that painful just uncomfortable and strange feeling. Definitely need to do more stretching and exercises to ensure this thing doesn’t last when it pops up.

[racecarworm]

I did my surgery in March 2021, so it's been nearly 2 years now, and I have my nail removal in 2 weeks. I still have the rods in and was completely fine, although I went skiing in Big Bear California so it wasn't insanely cold.

Tramadol helped me a lot with nerve pain, and from my experience the next 2-3 weeks will hurt a lot. But after that it sort of goes down. I honestly think its better to take pain killers and keep stretching rather than trying to tolerate the pain.

[erenyeager1]

I did my surgery in March 2021, so it's been nearly 2 years now, and I have my nail removal in 2 weeks. I still have the rods in and was completely fine, although I went skiing in Big Bear California so it wasn't insanely cold.

Tramadol helped me a lot with nerve pain, and from my experience the next 2-3 weeks will hurt a lot. But after that it sort of goes down. I honestly think its better to take pain killers and keep stretching rather than trying to tolerate the pain.

That’s great. Congrats man! You are almost at the end of you LL journey. Thanks to some patients I met in the first days post hospital discharge, I still have about 23 pills of oxycodone left. Important tip to future LLer: save some opioids for the end and don’t use it all in the first few weeks. I can’t imagine pushing through the last 1-2 cm without oxy and only with Tylenol. I mean it’s definitely doable but it’ll be hell a lot more difficult. I am at 3.5 cm today. I am planning to start taking oxy at 5.7 cm, so I can have one a day til the end. I regret a little that I didn’t manage to save more, so I can starting taking it at 4.x cm.

I am standing and walking quite often, like I stand for 1-2 minutes every an hour or so. I also played 5 hours of Witcher, though sitting for a long time is very very energy consuming. I was sweating towards the end.

[racecarworm]

You should be able to ask Paley for more oxy

[user1396]

I am at 7.8 right now, your mileage may vary but I definitely don’t need an Oxy everyday. 2.5mg before PT sessions a few x per week is more than enough at this stage, and I am very tight.

[erenyeager1]

You should be able to ask Paley for more oxy

Hmmm I haven’t tried asking. I was told by people who left that they were not given any extra even asked, so they advised me to save some.

I am at 7.8 right now, your mileage may vary but I definitely don’t need an Oxy everyday. 2.5mg before PT sessions a few x per week is more than enough at this stage, and I am very tight.

Yes. I think 5 mg a day would be enough for me when I am at 7. Just need to make sure that I have some oxy left for the end. Congrats man! You are almost done with lengthening.

Also I am getting come-and-go nerve pain and numbness now. They happen at any time, but none of them stay for too long yet. I am expecting some of the experience to become persistent in the next two weeks, but hopefully that comes later.

[portnoy]

@racecarworm could you share a picture of your proportions? And what were you stats pre/post surgery?

I would love to hit the slopes as well post surgery, but I'm kinda worried about biomechanics.

[EndGame]

@racecarworm could you share a picture of your proportions? And what were you stats pre/post surgery?

I would love to hit the slopes as well post surgery, but I'm kinda worried about biomechanics.

Biomechanics do get affected but it's not so bad. I added almost 3" to my femurs with Paley and have being skiing and snowboarding many times since then. Like with squats I imagine, it feels a little different, not as ideal of proportions I'd say, but definitely no biggie. As long as one has no illusions of being a professional athlete, I think all recreational sports remain viable after enough PT and rehab

[racecarworm]

Theres a video of me doing squats on my most recent post
I went from 5’7 to 5’10. Biomechanics wont matter much unless your femurs were already very long.
I could do a squat ass to grass which I think matters a lot more than proportions.

[the188cmdream]

Biomechanics do get affected but it's not so bad. I added almost 3" to my femurs with Paley and have being skiing and snowboarding many times since then. Like with squats I imagine, it feels a little different, not as ideal of proportions I'd say, but definitely no biggie. As long as one has no illusions of being a professional athlete, I think all recreational sports remain viable after enough PT and rehab

Are you worried about your athletic performance or proportions after lengthening 7 to 8 cm?

Did you meet any veterans that fully recovered and did they look proportionate?

Do you think lengthening less would allow you to keep your athletic performance (e.g. 5 or 6 cm)

[erenyeager1]

Theres a video of me doing squats on my most recent post
I went from 5’7 to 5’10. Biomechanics wont matter much unless your femurs were already very long.
I could do a squat ass to grass which I think matters a lot more than proportions.

Biomechanics do get affected but it's not so bad. I added almost 3" to my femurs with Paley and have being skiing and snowboarding many times since then. Like with squats I imagine, it feels a little different, not as ideal of proportions I'd say, but definitely no biggie. As long as one has no illusions of being a professional athlete, I think all recreational sports remain viable after enough PT and rehab

I get the same impression from other patients. If you just do sports recreationally, the change most likely won't bother you a bit.

Are you worried about your athletic performance or proportions after lengthening 7 to 8 cm?

Did you meet any veterans that fully recovered and did they look proportionate?

Do you think lengthening less would allow you to keep your athletic performance (e.g. 5 or 6 cm)

To question 2 I'd say that the ones left in the past weeks I saw them stand up and they look fine. I can't tell they had surgery if not for the scars.

[erenyeager1]

Day 43:

I am at 3.7 cm today, at least 43 more days to go. Starting last Saturday (3 days ago), I begin to have all sorts of pain out of a sudden. They are all managable so far and not persistent. I am having nerve pain on my left lower leg. It is not really pain, but a strange feeling, like someone put a lot of mint on the area. That is okay. Also have numbness in the same area, but it comes and goes (comes quite often though). When I sit down for too long and then try to stand up, I experience a sharp pain in my right knee (the left part of it) and make it difficult to straight it for a few seconds. Then it dies down and goes away. It only happens when I try to move my leg from straight to bent or vice versa. It doesn't happen when the leg is stationary. These are all okay and managable. I am not too worried because I was expecting these anyways. Most people get nerve pain of some sort (some people don't have nerve pain at all). I will definitely tell Robbins when I see him next time. I have around 23 10mg oxy left. I am planning to start on taking 2.5mg a day in two weeks. Seeing myself taller is in a way a painkiller itself.

Also the aquatic therapy was great. I was very happy with it. I feel almost normal in water, and it is a great feeling after not walking for so long. I was surprised how many patients are doing it. Apparently you can do it even with an external fixator. Paley is renting a swim school's pool for now, but they are expecting a new pool to open behind where the PT is now, so it will be easier for the patients in terms of transportation. I was told it is going to open this summer. I will be going to the pool every Tuesday from now on. Paley is in UAE opening a new clinic in Abu Dhabi (don't know why not Dubai). He open a clinic in Poland a few years ago. I didn't see Paley at all after surgery. I did see him the day before surgery for a few minutes where he did some evaluations. I honestly think not hearing from Paley is a good thing - meaning that I am not running into troubles that need Paley's input.

[the188cmdream]

Seeing myself taller is in a way a painkiller itself.

[erenyeager1]

PT told me today that the things I am feeling are very normal. PT is what I am looking forward to everyday. It’s pretty fun. A few people are leaving this week. It is interesting that people say they want to be done and leave as soon as possible, but when it comes to the time to leave, it is a little sad as many have lived here for at least 3 months and got used to the life here. I am looking forward to going back as soon as possible though. Consider that I have 43 mm to go, i.e. 43 days, and that I’ve been here for 44 days, I am almost 1/2 done with the process!

[the188cmdream]

PT told me today that the things I am feeling are very normal. PT is what I am looking forward to everyday. It’s pretty fun. A few people are leaving this week. It is interesting that people say they want to be done and leave as soon as possible, but when it comes to the time to leave, it is a little sad as many have lived here for at least 3 months and got used to the life here. I am looking forward to going back as soon as possible though. Consider that I have 43 mm to go, i.e. 43 days, and that I’ve been here for 44 days, I am almost 1/2 done with the process!

Do most people make it to the full 8 cm?