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[Activatedxx]

Did you notice any difference in recoveries of patients who had lon femur? Having the pins tear through muscle I imagine would hinder long term recovery.

Can’t tell only people with precice there were 2 Chinese girls and almost all the rest were Lon femur

[Activatedxx]

Small update, I start physio in 5 hours, trying to go sleep as I write this. I have insomnia now so sometimes I just pull all-nighters, just started trying melatonin for sleep.

After removal I had that immense pain in my right leg, my left leg was fine. I’m very happy it went away, I couldn’t straight or bend my knee without 8/10 pain knee the side screw lock sites.
Due to this I wasn’t able to use my right leg or exercise it and got a knee flexion contracture, hopefully it will resolve with sessions of physio. I cant straighten my right leg it’s bent so I lost alot of ROM due to post surgery pain and recovery

I went to the gym and used the stationary bike for 10 min and some of the leg press machines with my body weight, my legs are exhausted


I went to work two days ago and it was 60% productivity, I repair electronics so my job can be done by sitting down. However it was exhausting because the night before I could not sleep and had to pull an all nighter, I’ve been completely cold Turkey on painkillers and sleep aids besides melatonin since fixator removal, trying to train my body to go back pre op

[Fiveandsomething]

Man that was interesting to read. I would also add that PT is absolutely necessary POST. I thought I was gonna be okrrt and just watch videos and do the exercises myself but man was that a lie.

Bunch of people probably remove the fixators and continue their normal life hence why their recovery could be longer and/or their outcome not the best.

I know finances has a lot to play in it as well.

The surgery is a long process, it doesn’t stop when you stop lengthening or go back to your home, for me it stops when I’m able to do things I did PRE without assistance. Not just walking or jogging.

[Fiveandsomething]

WOW really?  When did you have the LON procedure? Are you still recovering? What made you go with LON instead of Precice?

Lol the sacarsm.

Dude is the most educated scholar when it comes to LL. He has more knowledge than the doctors /surgeons that have spent years training to perform the surgery and far more experience than the patients that have undergone the surgery.

Everything he says is Facts and shouldn’t be questioned.  I’d Kick the sh8t outta him if I could kick 🥴.

[Growing]

Lol the sacarsm.

Dude is the most educated scholar when it comes to LL. He has more knowledge than the doctors /surgeons that have spent years training to perform the surgery and far more experience than the patients that have undergone the surgery.

Everything he says is Facts and shouldn’t be questioned.  I’d Kick the sh8t outta him if I could kick 🥴.

LOL..LMAOO!! Word bro!! So Annoying!! Wish we could block people on here like reddit and Facebook.. lol.

[Activatedxx]

Update:
This is my last update for a little while, sorry if I don’t reply to messages I’ve been very busy as I’ve returned to work and have physical therapy and other things to do everyday.

So I started physical therapy, they did an evaluation of my ROM for every muscle (hips, hams, quads etc). It’s definitely tough, they worked me like a dog during the sessions. It’s gonna be a long road to recovery, because just when you think the hard part is over here comes another hard part. It’s still pretty hard to sleep, all my muscles are tight hips/hams etc so my body is very stiff waist down and I cannot get in a very comfortable position even with the fixators off. My hips hurt after laying on them for 20-30 min. Sitting down hurts and your butt gets sore after 20-30min even on a pillow, because of muscle loss it feels like you’re sitting on your bones. This is no walk in the part and I have my work cut out for me. I was given home exercises to do today daily

https://imgur.com/a/IPdYyrA

I am still not walking unassisted due to my right knee contracture and also to be safe because buldu said to wait a few weeks before pressing full weight on left leg.

Hopefully next time I update this diary I will be walking decently and unassisted, I am logging off until then

[Activatedxx]

Update:
This is my last update for a little while, sorry if I don’t reply to messages I’ve been very busy as I’ve returned to work and have physical therapy and other things to do everyday.

So I started physical therapy, they did an evaluation of my ROM for every muscle (hips, hams, quads etc). It’s definitely tough, they worked me like a dog during the sessions. It’s gonna be a long road to recovery, because just when you think the hard part is over here comes another hard part. It’s still pretty hard to sleep, all my muscles are tight hips/hams etc so my body is very stiff waist down and I cannot get in a very comfortable position even with the fixators off. My hips hurt after laying on them for 20-30 min. Sitting down hurts and your butt gets sore after 20-30min even on a pillow, because of muscle loss it feels like you’re sitting on your bones. This is no walk in the part and I have my work cut out for me. I was given home exercises to do today daily

https://imgur.com/a/IPdYyrA

I am still not walking unassisted due to my right knee contracture and also to be safe because buldu said to wait a few weeks before pressing full weight on left leg. Anyone already going through the process already NEVER skip physical therapy and exercises, you condition can deteriorate like crazy in just 2-3 days of inactivity/lack of physical therapy once you are past the 5cm mark. In one of of inactivity after frame removal I lost 25 degrees of rom on my right leg, I cannot straight it because of that so learn from my mistake, i cannot stress that professional PT will make or break your success majority of the time

Hopefully next time I update this diary I will be walking decently and unassisted, I am logging off until then

[Fiveandsomething]

This surgeon thought I was 6’1 😭. One more person says that I’m no longer identifying as 5’10. Lool.

[Stretch]

Update:
This is my last update for a little while, sorry if I don’t reply to messages I’ve been very busy as I’ve returned to work and have physical therapy and other things to do everyday.

So I started physical therapy, they did an evaluation of my ROM for every muscle (hips, hams, quads etc). It’s definitely tough, they worked me like a dog during the sessions. It’s gonna be a long road to recovery, because just when you think the hard part is over here comes another hard part. It’s still pretty hard to sleep, all my muscles are tight hips/hams etc so my body is very stiff waist down and I cannot get in a very comfortable position even with the fixators off. My hips hurt after laying on them for 20-30 min. Sitting down hurts and your butt gets sore after 20-30min even on a pillow, because of muscle loss it feels like you’re sitting on your bones. This is no walk in the part and I have my work cut out for me. I was given home exercises to do today daily

https://imgur.com/a/IPdYyrA

I am still not walking unassisted due to my right knee contracture and also to be safe because buldu said to wait a few weeks before pressing full weight on left leg.

Hopefully next time I update this diary I will be walking decently and unassisted, I am logging off until then

Thank you for posting your journey, I'm sure it has been useful for many.

During your evaluation was there any indication as to whether you are likely to regain your previous mobility/ROM or anything close, or is it too early to gauge?

Best

[Activatedxx]

Thank you for posting your journey, I'm sure it has been useful for many.

During your evaluation was there any indication as to whether you are likely to regain your previous mobility/ROM or anything close, or is it too early to gauge?

Best

Way to early to gauge, two days ago my opinion would have different. After physio and swimming daily for a few days I’ve had significant improvement. I would think I could, because I did not do much exercise etc pre-op. If you’re talking about my prime I would highly highly highly doubt it, in high school I was a state-ranking wrestler and I doubt I could have the same explosiveness, but I would think I could get back to pre-op condition when I was not really that fit

This is speculation but I believe 5-6cm you can recover very well, 7-8cm is kind of a lot. I only did 8 because paley says it’s the max safe limit but now that I’ve done 8 I realized how much it actually is. 

I went to the club today in crutches lol

[more]

Way to early to gauge, two days ago my opinion would have different. After physio and swimming daily for a few days I’ve had significant improvement. I would think I could, because I did not do much exercise etc pre-op. If you’re talking about my prime I would highly highly highly doubt it, in high school I was a state-ranking wrestler and I doubt I could have the same explosiveness, but I would think I could get back to pre-op condition when I was not really that fit

This is speculation but I believe 5-6cm you can recover very well, 7-8cm is kind of a lot. I only did 8 because paley says it’s the max safe limit but now that I’ve done 8 I realized how much it actually is. 

I went to the club today in crutches lol

Does Paley say 8 cm is safe limit with LON Femur?. I doubt. I think you are misquoted Paley here

[Activatedxx]

Does Paley say 8 cm is safe limit with LON Femur?. I doubt. I think you are misquoted Paley here

With internal nail, however even with internal nail/Lon femur it feels like 8cm makes your femurs very long. Same thing. My femurs are the same length as my 180cm friend I noticed when sitting down. It doesn’t look bad, actually I like how it looks. Longer legs make your proportions look better. I’m saying once you hit 6cm that felt like the normal max for me, my legs were already looking long at 6 now they look very long, regardless of method I’m not  sure how well your muscles will adapt to an 8cm lengthening, 8cm is a pretty high amount of lengthening

[billsmafia]

That is why I’m afraid to do full 8cm~~

5 cm is what I aim for personal

Do you notice it looks off proportion from side profile of your body? Femur to tib ratio, especially when bending knees? Like knees are very low

Does being nkkd exagerate it?

[Highest]

Does Paley say 8 cm is safe limit with LON Femur?. I doubt. I think you are misquoted Paley here

In the presentation Paley gives regarding why he limited the precise 2 nail from being allowed to lengthen over 8cm he never stated that 8cm was the "safe max" or anything close to that. He said problems rise exponentially over 8cm but patients wanted more than the 6.5cm the original precise nail allowed. So it is more of a compromise that he allows 8cm than any sort of "safe max".

[PerfectBody]

That is why I’m afraid to do full 8cm~~

5 cm is what I aim for personal

As somebody who has done 5cm, let me assure you that your recovery will be perfect. Almost too perfect - after a month you will be ready to walk again. I recommend 6cm, just so you can leave knowing feeling very accomplished.

[DonBones]

As somebody who has done 5cm, let me assure you that your recovery will be perfect. Almost too perfect - after a month you will be ready to walk again. I recommend 6cm, just so you can leave knowing feeling very accomplished.

Are you happy with the 5?

[billsmafia]

As somebody who has done 5cm, let me assure you that your recovery will be perfect. Almost too perfect - after a month you will be ready to walk again. I recommend 6cm, just so you can leave knowing feeling very accomplished.

Very reassuring. 6 may be max of my aim. Biggest concern is proportion,recovery, and safety.

[PerfectBody]

Are you happy with the 5?

I am 1 million percent happier being 5cm taller. Would I be happier with even more? Of course, who wouldn't.

Very reassuring. 6 may be max of my aim. Biggest concern is proportion,recovery, and safety.

In all politeness, nobody gives a sh*t about proportions. Please don't fool yourself bro. At the end of the day, your standing height is all people really care about. And an extra 2 inches anywhere won't make you look strange (unless the section you are lengthening was already long to begin with).
Recovery depends on how much PT you are doing before, during, and after the procedure.
Safety? Throw that out the window too. All of this is dangerous - that's the price we pay for greatness.

[Activatedxx]

I am 1 million percent happier being 5cm taller. Would I be happier with even more? Of course, who wouldn't.
In all politeness, nobody gives a sh*t about proportions. Please don't fool yourself bro. At the end of the day, your standing height is all people really care about. And an extra 2 inches anywhere won't make you look strange (unless the section you are lengthening was already long to begin with).
Recovery depends on how much PT you are doing before, during, and after the procedure.
Safety? Throw that out the window too. All of this is dangerous - that's the price we pay for greatness.

Yeah I can not stress how much physical therapy and inactivity will make or break your success. I developed a flexion contracture on my right leg from not doing PT and after 1 week of PT it’s Halfway gone but it’s a punch in the d*** trying to get rid of it, the stretching and exercises are difficult af.

Lack of physical therapy and inactivity will make you develop deformities/contractures  and imbalances which are hard and painful to correct, especially after 5cm mark.
Doing PT helps you retain ROM and prevent problems, instead of having problems and then trying to correct them which wastes so much recovery time


I am also much less stiff since starting pt after the frame removal and can sleep so much better and am so much more comfortable. Obviously nowhere as close as comfort to Pre-op but when you’re stiff waist down it really affects your sleep. I can sleep 7-8 hrs a night finally without melatonin even. I do wake up every couple hours usually to turn or something but compared to the last 100 days this is the best I’ve ever been mentally since starting this process

[billsmafia]

I am 1 million percent happier being 5cm taller. Would I be happier with even more? Of course, who wouldn't.
In all politeness, nobody gives a sh*t about proportions. Please don't fool yourself bro. At the end of the day, your standing height is all people really care about. And an extra 2 inches anywhere won't make you look strange (unless the section you are lengthening was already long to begin with).
Recovery depends on how much PT you are doing before, during, and after the procedure.
Safety? Throw that out the window too. All of this is dangerous - that's the price we pay for greatness.

Bigger is not always better, especially for beauty. Proportionality and symmetry are important factors. Even inspired the Vitruvian man standard of beauty. 8cm is the edge of proportion normalcy in concern with proportion, as far as what I see here on the diaries. For most people at least. Always outliers. Again, just my opinion. Beauty is in the eye of beholder.

[0010010]

Mate you went big, you went hard and you nailed it! Good stuff in another six months you'll look back and laugh while swimming in a pool of vaginas and success #player

[Activatedxx]

Mate you went big, you went hard and you nailed it! Good stuff in another six months you'll look back and laugh while swimming in a pool of vaginas and success #player

Thanks for the encouragement bro

[Activatedxx]

Bigger is not always better, especially for beauty. Proportionality and symmetry are important factors. Even inspired the Vitruvian man standard of beauty. 8cm is the edge of proportion normalcy in concern with proportion, as far as what I see here on the diaries. For most people at least. Always outliers. Again, just my opinion. Beauty is in the eye of beholder.

In my opinion 8cm femurs looks very good except when nked from the side profile, it’s not really bad even when nked. With clothes it looks good actually especially when sitting down

[Dark]

hide this comment from his wife

[Activatedxx]

hide this comment from his wife

Please lol

[Activatedxx]

Quick update

It’s been about a few weeks since removal, Buldu said wait 2-3 weeks before full weight bearing, in terms of recovery I’m getting there. I can take like 15-20 steps unassisted but walk like a penguin because my hips are tight it makes my lower back arch and my pelvis tilt forward, my flexion contracture is 75% gone. My PT said my glutes are very weak, and my hip flexors are very tight. So that is the main obstacle for my recovery. Those are essential to walking and more importantly posture from tight hips.
My complication leg/left leg used to be my dominant leg but after removal it’s weaker now. I have slight pain near top pin removal site and one spot by break site when pressing on it with my finger, I think one of the screws are there, and moving it certain angles I get 2/10 pain, but not on other leg. My right leg gave me so much more discomfort/pain during lengthening but now it is the more quickly healed one.

Life is liveable at the moment. I don’t need any meds at all, and sleep somewhat comfortably, but can’t get in many comfortable positions like before because of hip tightness. It’s not close to as enjoyable as before but it’s so much better than the distraction period. I can get around independently with crutches. I drive to work every day. 70% productivity. At the end of the day my legs are done for usually, it does get exhausting especially on PT days after strengthening exercises. I try to be extra careful always, almost tripped a few times with crutches because of a wet spot or someone accidentally bumping into me.

The recovery for 5-6cm is probably 1/3 hard as doing the full 8, unless you do the PT and stretches constantly and daily. However with LON femur I couldn’t because the pinsite infections make PT impossible and even without them, when you pass 5-6cm the pins feel so tight and hurts when you stretch hard or at least for me.

Although this update doesn’t sound great, it is for me. I see so much progress after 2 weeks of PT. Every session has and shows slight progress. Within a week I could barely stand up long enough unassisted in the shower for 5min to being able to stand for 10-15 min without getting more than slightly tired.

I missed my birthday during the end of lengthening! Ended up renting a limo and having some crippled fun. My femurs look pretty long sitting down and I like the look, maybe not in this picture because the pants are baggy and sagging under my waist. I lost weight and am gaining it back. But with slim jeans it looks good especially sitting down.

https://imgur.com/a/VcKLdwc

Also hung out with one of the other lengthening patient I met in turkey a few days ago. He lives about 30min away from me, crazy that we both went at the same time from the same city, I guess at some point we’ve probably met someone with cll without knowing possibly. I meet so many people every day at work etc and they would never even know!

[Growing]

Quick update

It’s been about a few weeks since removal, Buldu said wait 2-3 weeks before full weight bearing, in terms of recovery I’m getting there. I can take like 15-20 steps unassisted but walk like a penguin because my hips are tight it makes my lower back arch and my pelvis tilt forward, my flexion contracture is 75% gone. My PT said my glutes are very weak, and my hip flexors are very tight. So that is the main obstacle for my recovery. Those are essential to walking and more importantly posture from tight hips.
My complication leg/left leg used to be my dominant leg but after removal it’s weaker now. I have slight pain near top pin removal site and one spot by break site when pressing on it with my finger, I think one of the screws are there, and moving it certain angles I get 2/10 pain, but not on other leg. My right leg gave me so much more discomfort/pain during lengthening but now it is the more quickly healed one.

Life is liveable at the moment. I don’t need any meds at all, and sleep somewhat comfortably, but can’t get in many comfortable positions like before because of hip tightness. It’s not close to as enjoyable as before but it’s so much better than the distraction period. I can get around independently with crutches. I drive to work every day. 70% productivity. At the end of the day my legs are done for usually, it does get exhausting especially on PT days after strengthening exercises. I try to be extra careful always, almost tripped a few times with crutches because of a wet spot or someone accidentally bumping into me.

The recovery for 5-6cm is probably 1/3 hard as doing the full 8, unless you do the PT and stretches constantly and daily. However with LON femur I couldn’t because the pinsite infections make PT impossible and even without them, when you pass 5-6cm the pins feel so tight and hurts when you stretch hard or at least for me.

Although this update doesn’t sound great, it is for me. I see so much progress after 2 weeks of PT. Every session has and shows slight progress. Within a week I could barely stand up long enough unassisted in the shower for 5min to being able to stand for 10-15 min without getting more than slightly tired.

I missed my birthday during the end of lengthening! Ended up renting a limo and having some crippled fun. My femurs look pretty long sitting down and I like the look, maybe not in this picture because the pants are baggy and sagging under my waist. I lost weight and am gaining it back. But with slim jeans it looks good especially sitting down.

https://imgur.com/a/VcKLdwc

Also hung out with one of the other lengthening patient I met in turkey a few days ago. He lives about 30min away from me, crazy that we both went at the same time from the same city, I guess at some point we’ve probably met someone with cll without knowing possibly. I meet so many people every day at work etc and they would never even know!

Congrats man, and happy belated birthday. I think you looks great in the photo. Good to see you living your best life not letting this recovery slow you down. And you're pretty lucky to have such a supportive wife and family, that part I lack. How's the guy from your city recovering? Did he hit 8cm as well? What do people at your work think you've done? Coming form an office environment myself, I know co-workers can be very nosey. I'd be surprised if they weren't asking why your walk is different now.

[Activatedxx]

Congrats man, and happy belated birthday. I think you looks great in the photo. Good to see you living your best life not letting this recovery slow you down. And you're pretty lucky to have such a supportive wife and family, that part I lack. How's the guy from your city recovering? Did he hit 8cm as well? What do people at your work think you've done? Coming form an office environment myself, I know co-workers can be very nosey. I'd be surprised if they weren't asking why your walk is different now.

Thanks man. Honestly I kept it a secret until the day after my surgery I told my family.
The other guy is a little ahead of me in recovery, he did 6.5cm. I’m a business owner and I just tell my employee I had a car accident. People might not say something but they notice. One of my friends that is 5’7 saw me for the first time and he was like bro how did you grow so much. He would not stop mentioning for a while and kept asking how. Was pretty suspicious. Not everyone is like that, mainly people that are your height or 2-4 inches above you are going to notice. But I hadn’t seen anyone in months, a lot of people will brush it off but there will be a few that are suspicious but will brush it off. Even if they know about LL I doubt they’ll automatically assume and their is no way to prove it anyways so who cares

[LeoGb]

I hope everything goes well with you, you'll see that in a while you'll be better. One question, if you had known you were going to go through all this, would you have preferred to go for 5-6 in TIBIAS, or are you still adamant that it was a good decision to go for femurs?

[Activatedxx]

I hope everything goes well with you, you'll see that in a while you'll be better. One question, if you had known you were going to go through all this, would you have preferred to go for 5-6 in TIBIAS, or are you still adamant that it was a good decision to go for femurs?

Tibias. Way Less muscle to stretch there and way less inconvenient in terms of comfort. All LL is very difficult but LON femurs is something that belongs in a scary movie

[Growing]

Thanks man. Honestly I kept it a secret until the day after my surgery I told my family.
The other guy is a little ahead of me in recovery, he did 6.5cm. I’m a business owner and I just tell my employee I had a car accident. People might not say something but they notice. One of my friends that is 5’7 saw me for the first time and he was like bro how did you grow so much. He would not stop mentioning for a while and kept asking how. Was pretty suspicious. Not everyone is like that, mainly people that are your height or 2-4 inches above you are going to notice. But I hadn’t seen anyone in months, a lot of people will brush it off but there will be a few that are suspicious but will brush it off. Even if they know about LL I doubt they’ll automatically assume and their is no way to prove it anyways so who cares

I should of stuck to my original idea of not telling a soul until after the procedure. Thats where I messed up..lol. That have to be a cool feeling for your friend to obviously notice you are taller.. He's probably a bit envious.. lol. Does people noticing or the felling of being taller make it all worth it for you in the end. Would you do it all over again? And its crazy how 1.5cm can make a difference in recovery time.