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[zatara]

Thanks for your very detailed thread, it seems like you have been the perfect patient for LL.

I have been an avid reader of your experience, but it was not clear to me when you were allowed to move from the wheelchair to crutches. I guess it was 4-5 months after OP? Do you think it is safer (& feasible) to stay in Florida until a bone bridge is formed (and one is thus free from the wheelchair)?

[DoingItForMe]

The great news today is that that pain I talked about for the past month on the top of my left femur is gone. I was massaging it all day yesterday and finally today, the pain disappeared. Now I'm only left with all the other soreness and pains in my legs. Those are probably from doing all this walking and trying to regrow my muscles and strength. But it's a huge relief, because I thought that that pain would have been permanent, since it lasted for months. I'm back to being optimistic about my recovery. I think it's just a matter of time now for me to get back to normal. Legs are still tight from even just standing. Is that normal to the non-LL out there? Are your thigh muscles tight when you stand or are they relaxed? I completely forgot if they were or weren't pre-op.

Thanks for your very detailed thread, it seems like you have been the perfect patient for LL.

I have been an avid reader of your experience, but it was not clear to me when you were allowed to move from the wheelchair to crutches. I guess it was 4-5 months after OP? Do you think it is safer (& feasible) to stay in Florida until a bone bridge is formed (and one is thus free from the wheelchair)?

You are on a walker since day 1. Wheelchair is completely optional if your recovery is great. You can just use the walker to get everywhere. I would even recommend that because muscle atrophy is a pain for me right now.

You can use crutches whenever as well but they recommend 1-2 months post op, because crutches a bit harder to use than a walker. Some people do stay 5-6 months and then go home walking. But hotel fees have gone up from $70 per night to $120 a night at Homewood.

[alps]

even without LL I get random aches here and there every now and then. but I don't really pay any attention to it. Now that I'm considering LL I keep telling myself to remember my state before LL so that I'll know if things regress after LL.

to answer your question, no they don't get "tight" or anything when I stand, but yeah they do hurt a bit from fatigue after long. I have no idea what tightness even means.

[DragonTurtle]

Hi DoingItForMe,

I stayed at Homewood suites for my consultation last month, and the information packets Dr. Paley's staff sent me still say the price of Homewood is $70 - do you know when the price changed? (Or maybe it's due to the season, I believe in busy times they increase the price, is what it said in the packet).

Also, are you walking normally now, or is there still a perceptible impairment to your gait? If you are walking normally, how many months post-op were you able to start walking normally?

Thanks.

[DoingItForMe]

By tightness, I mean that my leg muscles are constantly flexing and tightening, even though I'm simply standing. For example, if I stand right now and you poke my thighs, it'd feel rock hard. The kind of aches I have are not something you can simply ignore. My legs feel really sore like someone beat them up or it just went through a very rigorous gym routine.

Hi DoingItForMe,

I stayed at Homewood suites for my consultation last month, and the information packets Dr. Paley's staff sent me still say the price of Homewood is $70 - do you know when the price changed? (Or maybe it's due to the season, I believe in busy times they increase the price, is what it said in the packet).

Also, are you walking normally now, or is there still a perceptible impairment to your gait? If you are walking normally, how many months post-op were you able to start walking normally?

Thanks.

I heard it from a patient staying at Homewood that they were going to up his hotel fees. The change supposedly happened in December, possibly because of seasonal since Winter is the busiest time for them, and possibly because the patient stayed there for 6 months already.

No, I'm not walking normally. There's still a hip sway. I could try to force myself to walk normally, but it gets really tiring after while. Imagine it like s*cking in your gut - for some reason s-u-c-king is censored in this forum. You can do it briefly, but eventually you tire out and go back to hip swaying. Someone said that I look like a penguin.

A patient who exercised and walked a lot every day lost his hip sway after just 2 weeks after he got the OK for walking without crutches. He was around 6-7 month post-op. I'm at month 6 post-op right now and I still have hip sway even after 3 weeks of walking without crutches. I think it'll take another month or two before the hip sway is completely gone. Possibly longer than that before I can walk up and down stairs normally. I've been going up and down stairs one step at a time instead of alternating steps with each leg. My legs are just really weak right now. I know that I'm getting stronger each day though - albeit slowly. I do notice that every once in a while, I'm able to do something I couldn't do before like go up and down stairs without holding onto the handrail. So I'm optimistic about my recovery. It just takes a lot of patience at this point.

[Peaceout]

Did you ever feel uncomfortable after you returned your normal life(casual clothes/going out or even maybe something like going pool) about your femurs being too long compared to your body?(8 cm is a huge amount after all)
And im sorry if you alredy answered a similar question like this.I have read your diary but i dont remember something like that.

[DoingItForMe]

Did you ever feel uncomfortable after you returned your normal life(casual clothes/going out or even maybe something like going pool) about your femurs being too long compared to your body?(8 cm is a huge amount after all)
And im sorry if you alredy answered a similar question like this.I have read your diary but i dont remember something like that.

yea, it looks weird in the mirror. It makes my tibias look too short and my knees look too low compared to where I imagine they should be.

[Peaceout]

yea, it looks weird in the mirror. It makes my tibias look too short and my knees look too low compared to where I imagine they should be.

Will you do anything about this?Like going another round for tibias or is it tolerable?Or maybe can you hide it with clothes?what do you think?

[Uppland]

Out of the patients you know, who lengthened the shortest amount and what was his/her recovery like?

Do you regret doing 8cm?

[DoingItForMe]

Out of the patients you know, who lengthened the shortest amount and what was his/her recovery like?

Do you regret doing 8cm?

I only know about the ones who finished while I was still there. I don't know what happened to the ones who are still in the middle of doing it. But the shortest was around 7 cm due to a bad angled cut on the femur by Dr. Paley. He had the ability to go to 8 cm and had the best recovery I could tell out of everyone, but only had to stop 1 cm short because of a mistake that Dr. Paley made. He cut the bone at an almost 45 degree angle instead of a 90 degree horizontal cut. He admitted that he screwed up but refused to give a refund or any kind of compensation. Thumbs down for Paley in my book for doing that.

I will not know if I regret doing 8 cm until after I can walk normally and not have any pain in my legs. If doing 8 cm is what caused permanent pain in my leg, then yes, I regret it. If not, then I'm okay with the disproportionate legs, because height is more important to me. I was pretty proud of being able to get to the full 8 cm.

Will you do anything about this?Like going another round for tibias or is it tolerable?Or maybe can you hide it with clothes?what do you think?

Absolutely will not be doing tibias, because I'm still feeling pain in my legs from femurs even 6 months post-op. My legs are significantly weaker. I used to be able to leg press 550+ lbs. I don't know the actual limit, because the machine topped off at 550 lbs. Now I can't even walk up and down stairs because my 150 lb weight is too much. I'm not going to go through this again. I'm still below average height, but I don't care anymore. My recovery is turning out worse than the other patients and worse than I hoped for.

I can hide with jeans. I look absolutely fine with jeans or pants on. With shorts, it's also fine as long as I lower the shorts a bit to cover up how long my femurs are. By tricking people into thinking that my torso is longer, people will think my femurs are shorter than they actually are. This fixes the proportions and with clothes on, you will not be able to tell that I had LL. When I put on 1 inch lifts + 1 inch soled sneakers and pull my jeans all the way up, then it becomes noticeable that my legs are longer than they should be. Again, lowering my pants help with the proportions. Even general, nobody will notice the disproportion with clothes on. If you're nked, they will notice.

[aspirant185]

Do you regret doing it with Dr. Paley ? You obviously paid a premium price and you obviously hoped for a premium recovery but you said that so far it is not happening. If you could go back in time, would you choose..Guichet, or Monegal, or somebody else for example ?

[DoingItForMe]

Do you regret doing it with Dr. Paley ? You obviously paid a premium price and you obviously hoped for a premium recovery but you said that so far it is not happening. If you could go back in time, would you choose..Guichet, or Monegal, or somebody else for example ?

The problem is that I don't know whose fault it is for me to still have pain for this long. Other patients only have minor aches at this point. So it could very well be that my body is rejecting the 8 cm and I pushed my legs too far. But that's not a fault of my choosing, because I've done all the stretching and recommended exercises. I'm hoping that by the time Dr. Paley gives me the OK to walk without crutches, then the pain will all go away. My guess is that I'd have the okay either in January or February - or 7-8 months post-op.

The patient who had a bad angled cut obviously regrets doing it with Dr. Paley, though. He originally planned on doing tibias with Dr. Paley, but will do it with Dr. Guichet instead. I don't know anything about Dr. Monegal, but Dr. Guichet seems to have a great reputation on both forums, but of course some of his patients had problems, too. I don't think any doctor has perfect results every time. This surgery is just a gamble and anything can happen to you.

Right now I don't know if I would have chosen someone else to do the surgery. If the pain goes away eventually even if it takes a few more months, I'd be happy with the results. If it doesn't go away, then instead of going back in time to choose another doctor, I would choose to not have this surgery in the first place.

[femoral_indecency]

Hey Doing it! Thanks for your descriptive story of your LL with Paley. I have a couple questions for you: seeing as you have regular scheduled x-rays monthly, have you disclosed your LL operation to your family physician? (From my understanding, you have to be referred to x ray specialists By Your Regular physician) and how much did everything cost you? From operation to your stay in Florida. Thanks man.

[DoingItForMe]

Hey Doing it! Thanks for your descriptive story of your LL with Paley. I have a couple questions for you: seeing as you have regular scheduled x-rays monthly, have you disclosed your LL operation to your family physician? (From my understanding, you have to be referred to x ray specialists By Your Regular physician) and how much did everything cost you? From operation to your stay in Florida. Thanks man.

Dr. Paley gives me the x-ray prescriptions. My x-rays are done at a hospital and not by my family physician. He does not know I did LL yet. I don't plan on visiting him until I can walk normally again. Total costs was probably $95,000. Give or take $5.000.

[spaghetti743]

Do you know how to reply to youtube comments? Just wondering. Wish you the best and watched all your videos.

[DoingItForMe]

Do you know how to reply to youtube comments? Just wondering. Wish you the best and watched all your videos.

I think you meant to comment on Iamready's diary. I don't post youtube videos.

[Iamready]

What do you mean Doingitforme?  We have been watching all your vids. Maybe you were sleep taping them?  Haha. Anyways hope you have a speedy return to normal life.

[DoingItForMe]

What do you mean Doingitforme?  We have been watching all your vids. Maybe you were sleep taping them?  Haha. Anyways hope you have a speedy return to normal life.

You had me legitimately scared for a second, because I thought you were being serious until I read the "Haha". Good luck to you as well. I have a feeling that we would have been good friends if I was still in Homewood when you were. Too bad.

[Iamready]

Gotcha. Well hey I'm in Florida for another 4-5 months so maybe we can meet up sometime. I'm guessing that sometime is when things get a little easier for me. I have a feeling. Since I like to play it safe, I might return in a year to get more length out of my rods if safety concerns dictate it.
It's not the best scenario but seeing how difficult my tibia procedure has been it would be a miracle to get 8 out of my femurs. I also heard they are working on an internal for the arm lengthening.  Anyways. It's never too late to make a new friend. Have a good one, and I wish you continued success. 

[DoingItForMe]

Progress in terms of getting my strength back has been very slow. I'm going to start using my elliptical machine more now to try to gain it back. It doesn't appear that my strength will increase from just doing day-to-day activities.

If I could turn back time and given the choice between doing this surgery or not, I would still do it. Curing my height neurosis is a great feeling. It might not cure it for others, but at least for me, I don't feel short anymore. I mean, I know I'm still shorter than average, but at least I don't feel short anymore. That's the important part.

But if I could turn back time and do one less inch or 2.5 cm less, would I? Perhaps.

As much as I like adding that extra inch to get 3 inches, I probably should have stopped at 2 inches. That last inch was the hardest to get, and screwed up my athleticism the most. I know this because the last inch was where things started getting really tight, and my flexibility suffered the most. It's why my muscles are so tight right now. While I think it's possible to do 8 cm, I really do feel like I hit a limit, and shouldn't have tried to. I rather have a better recovery than that extra inch. I did not know that my recovery would be this bad. I thought that I would be walking normally by now, but nope, still walking like a penguin and can't go down stairs without holding the handrail. I can kiss competitive sports goodbye, because my muscles feel like they're stretched too much to give me much flexibility.

I currently have a 170 bpm heart rate from just walking, when I used to only get that when running. My stamina is really bad. I only lasted on the elliptical for 5 minutes on the lowest resistance before I started getting tired. I used to be able to stay on that thing for an hour or two.

Would doing just 5.5 cm mean that I'd have a 100% recovery? I don't know. But I do know that my legs would be probably be in a much better shape than now. Would it have cured my height neurosis, though... probably. 5'8" isn't that bad of a height, really. I remember that when I was at the 2 inch mark, I already felt tall enough. Stupid me wanted to get the most out of the surgery, because I've been quite the overachiever all my life. I thought I was doing myself a favor. But instead, I'm sitting here still with aches and pains in my legs and wondering if I should have stopped earlier.

[LLuser1]

I'm so sorry to hear that. What did Paley advise you to do?

[Deads]

Progress in terms of getting my strength back has been very slow. I'm going to start using my elliptical machine more now to try to gain it back. It doesn't appear that my strength will increase from just doing day-to-day activities.

If I could turn back time and given the choice between doing this surgery or not, I would still do it. Curing my height neurosis is a great feeling. It might not cure it for others, but at least for me, I don't feel short anymore. I mean, I know I'm still shorter than average, but at least I don't feel short anymore. That's the important part.

But if I could turn back time and do one less inch or 2.5 cm less, would I? Perhaps.

As much as I like adding that extra inch to get 3 inches, I probably should have stopped at 2 inches. That last inch was the hardest to get, and screwed up my athleticism the most. I know this because the last inch was where things started getting really tight, and my flexibility suffered the most. It's why my muscles are so tight right now. While I think it's possible to do 8 cm, I really do feel like I hit a limit, and shouldn't have tried to. I rather have a better recovery than that extra inch. I did not know that my recovery would be this bad. I thought that I would be walking normally by now, but nope, still walking like a penguin and can't go down stairs without holding the handrail. I can kiss competitive sports goodbye, because my muscles feel like they're stretched too much to give me much flexibility.

I currently have a 170 bpm heart rate from just walking, when I used to only get that when running. My stamina is really bad. I only lasted on the elliptical for 5 minutes on the lowest resistance before I started getting tired. I used to be able to stay on that thing for an hour or two.

Would doing just 5.5 cm mean that I'd have a 100% recovery? I don't know. But I do know that my legs would be probably be in a much better shape than now. Would it have cured my height neurosis, though... probably. 5'8" isn't that bad of a height, really. I remember that when I was at the 2 inch mark, I already felt tall enough. Stupid me wanted to get the most out of the surgery, because I've been quite the overachiever all my life. I thought I was doing myself a favor. But instead, I'm sitting here still with aches and pains in my legs and wondering if I should have stopped earlier.

That's two 5"6 guys now (you and Shyshy) who have said they felt satisfied with their height after 2 inches.. 5"8 is extremely common. I'd say it's nearly as common as 5"9.. It's also only a mere couple of centimetres off of 5"9 so you wouldn't be able to tell much of a difference.

You gave it all you had though. It's in your blood Doingit.

[LLSomeDay]

Hey buddy ! I have been following your diary for a month . You are great! You are an inspiring LL patient. I’m sure you are going to get through it. Just keep doing PT and exercises. 
I know you have chronic pains right now but it’ll surely go away after months. Just keep your chin up!

[LLSomeDay]

170 bpm heart rate is very high. you might need beta blocker medicine like a simple propranolol (Inderal®). I advice you to ask Dr. Paley for propranolol since such high bpm is not safe at all! I think you'd better do sth about it asap.

[DoingItForMe]

I'm so sorry to hear that. What did Paley advise you to do?

He thinks it's muscle weakness, but is not sure until he has more information. I'm going to get my x-rays done again this week to see how my bone growth is going and maybe shed some light on what's going on. My guess is that my tendon or muscle is trying to go back to its original length, but my longer bone is preventing it from happening. So instead, my thigh muscle or tendon is just constantly stretched throughout the day. I figured out this theory by sleeping two different ways. If I sleep with my legs straight out, the muscles in front of my thighs are tight and feel sore when I wake up. If I sleep curled up, then my thigh muscles are not tight and I don't feel sore when I wake up. After I do some walking, I also feel aches and pains in my legs up to several hours later. But if I sit still and don't do anything, then the aches and pain go away.

So I think it's a combination of both: muscles stretched too tight and muscles are weak. The muscles being weak is something I can fix by working out my legs more. But I don't know what to do about the muscle tightness. Only time will tell whether I will return back to normal life. I hope I do.

That's two 5"6 guys now (you and Shyshy) who have said they felt satisfied with their height after 2 inches.. 5"8 is extremely common. I'd say it's nearly as common as 5"9.. It's also only a mere couple of centimetres off of 5"9 so you wouldn't be able to tell much of a difference.

You gave it all you had though. It's in your blood Doingit.

Yea, 5'8" is a fine height to be at. I did not feel short once I past the 5'7" mark.

170 bpm heart rate is very high. you might need beta blocker medicine like a simple propranolol (Inderal®). I advice you to ask Dr. Paley for propranolol since such high bpm is not safe at all! I think you'd better do sth about it asap.

Is it that bad for someone who's working out? Because with my weak legs, it feels like I'm working out from just walking.

[Deads]

You haven't been heavily active for a long while now.. its not like walking is easy for you as it was before surgery. So if you would currently consider it a strenuous activity then it's not unreasonable to expect a higher heart rate.. Wouldn't hurt to inquire about it at the docs office.

My heart rate is at about 170 when I do heavy cardio.. I rarely do cardio though so it's naturally higher.

[LLSomeDay]

Yeah I think 170 bpm heart rate is not normal for just walking unless you have tachycardia. I am the same hight as your previous one . If I run fast, my heart rate will be 135-160 (usually 140) bpm (using apple watch). Inderal is a safe medicine.

[LLuser1]

He thinks it's muscle weakness, but is not sure until he has more information. I'm going to get my x-rays done again this week to see how my bone growth is going and maybe shed some light on what's going on. My guess is that my tendon or muscle is trying to go back to its original length, but my longer bone is preventing it from happening. So instead, my thigh muscle or tendon is just constantly stretched throughout the day. I figured out this theory by sleeping two different ways. If I sleep with my legs straight out, the muscles in front of my thighs are tight and feel sore when I wake up. If I sleep curled up, then my thigh muscles are not tight and I don't feel sore when I wake up. After I do some walking, I also feel aches and pains in my legs up to several hours later. But if I sit still and don't do anything, then the aches and pain go away.

So I think it's a combination of both: muscles stretched too tight and muscles are weak. The muscles being weak is something I can fix by working out my legs more. But I don't know what to do about the muscle tightness. Only time will tell whether I will return back to normal life. I hope I do.

makes sense

[femoral_indecency]

I know you may feel crappy right now (bone, muscle soreness, guilt, fear of social stigma etc.) man but take solace in the fact that you had it in you to take take the necessary measures towards change. You possessed the wisdom to acknowledge there was something in you or your environment that needed to change. You knew that there was a chance that, if you followed through with this possibly risky undertaking, there would be implications, but, regardless of pressure or moral dilemma, you put full stock in your beliefs and went for it which takes a lot of courage. In short, it takes balls to do what you and many other LL'ERS have done and I commend you for that. *Rant over*   ; ) 

P.s. I just thought of Shia Laboeuf's "JUST DO IT" rant after typing this Rofl!

[DoingItForMe]

I know you may feel crappy right now (bone, muscle soreness, guilt, fear of social stigma etc.) man but take solace in the fact that you had it in you to take take the necessary measures towards change. You possessed the wisdom to acknowledge there was something in you or your environment that needed to change. You knew that there was a chance that, if you followed through with this possibly risky undertaking, there would be implications, but, regardless of pressure or moral dilemma, you put full stock in your beliefs and went for it which takes a lot of courage. In short, it takes balls to do what you and many other LL'ERS have done and I commend you for that. *Rant over*   ; ) 

P.s. I just thought of Shia Laboeuf's "JUST DO IT" rant after typing this Rofl!

Haha, thanks for that. I always had the Just Do It spirit, which is why I'm a self-made multimillionaire now. It also led me to doing crazy stuff, including LL. After rereading ProgramDude's diary, I realized that my recovery will be as slow as his. He didn't start walking normally until around 9-11 months post-op. I'm currently at 6.5 months. While the other LLers who did 7-7.5 cm are walking normally after just 6 months post-op, I'm reframing my timeline to follow ProgramDude's more conservative/slow recovery time.

He also mentioned that he would get winded from just walking down the block. That's my situation right now. I can't walk more than a block without starting to get winded, and when I get winded, my bpm goes to 170.

In reply to LLSomeDay who said that 170 bpm is not normal and it might be tachycardia, that's wrong. Tachycardia is if my heartrate was really fast while at rest. When I'm walking, I'm not at rest. When I'm at rest, my heartrate is normal. The high heart rate from walking is because my legs are really weak and are working extra hard to get me to walk. It's the equivalent to having 25 lb ankle weights on your legs. That's what it feels like when I walk. Or when I walk upside down with just my arms, it's similar to that as well. So I can see why I get winded so easily. I didn't expect my muscles to get so weak so fast. But from what I read, each day that I don't use my muscles, it'd take 4 days to regain it. That sucks...

[LLSomeDay]

I just worried about you DoingItForMe. I didn't mean to annoy you. Btw I wish you fast recovery. Please keep us posted like before. I myself follow your diary every day.