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[SuchLL]

Are the PT’s instructing you to do any exercises which involve partial weight bearing? Or are you always sitting/lying down?

No exercises involve partial weight bearing except walking with walker.

[SuchLL]

6 cm on Tibia is not a good idea for most people?

Years ago their safe limit was actually 6.5 cm, but they found most people could only do 5 or less.

[6CMFemurs]

@SuchLL: What would you say your pain levels are at on a daily basis at this point? How much of your day are dedicating exclusively to rehab?

[SuchLL]

@SuchLL: What would you say your pain levels are at on a daily basis at this point? How much of your day are dedicating exclusively to rehab?

I almost don’t have any pain. For me tibias are painless comparing to femurs, but I heard it may become worse than femurs at some point since calf can get very tight.

I go to PT everyday for 1 hour, take bath twice a day for 1 hour (to warm muscle before stretch), do exercises and stretch twice at home for 1 hour, so 3 hours in total.

[SpeedDialer]

"6) Another negative is that there will be nearly twice as many surgical incisions. The scarring will be very apparent, and cannot be hidden with shorts. If you're satisfied with 8cm on femurs, reconsider tibias. CLL is getting popular in China these days. You don't want to be known as the CLL freak amongst your friends."

ty!!! Internal tibia has alot of obvious scars? Need a tattoo to conceal them?

[yash]

hey mate,  i just have a few questions..
1) how much duration are you walking everyday with walker?
2) how long after the 5cm tibia lengthening are you expected to bear full weight without walker/crutches?

[SuchLL]

"6) Another negative is that there will be nearly twice as many surgical incisions. The scarring will be very apparent, and cannot be hidden with shorts. If you're satisfied with 8cm on femurs, reconsider tibias. CLL is getting popular in China these days. You don't want to be known as the CLL freak amongst your friends."

ty!!! Internal tibia has alot of obvious scars? Need a tattoo to conceal them?

The incisions are very small though. Only two incisions on each leg are greater than 1 cm to my eyes. I think they won’t be noticeable if you have leg hair.

[SuchLL]

hey mate,  i just have a few questions..
1) how much duration are you walking everyday with walker?
2) how long after the 5cm tibia lengthening are you expected to bear full weight without walker/crutches?

1) probably just 1-2 mins everyday. During weekends I don’t use walker at all. I sit on a dolly cart to transfer myself because it’s small and easy to navigate.
2) It usually takes 2-3 months to fully consolidate

[6CMFemurs]

"6) Another negative is that there will be nearly twice as many surgical incisions. The scarring will be very apparent, and cannot be hidden with shorts. If you're satisfied with 8cm on femurs, reconsider tibias. CLL is getting popular in China these days. You don't want to be known as the CLL freak amongst your friends."

ty!!! Internal tibia has alot of obvious scars? Need a tattoo to conceal them?

If they are actually his friends, I’m pretty sure they wouldn’t think of him as a “CLL freak.” Also, a lot of people have scars, I think it is rude to point them out and ask what happened, unless they bring it up.

[ask.me]

@SuchLL Glad to hear things are going well! I'm low-key inspired by how well your tibial LL is going. Makes me a bit more confident in going forward with mine.
I am so curious about scarring. Does Paley have pictures of incision scars post consolidation? If you get it, can you share it with us?

If they are actually his friends, I’m pretty sure they wouldn’t think of him as a “CLL freak.” Also, a lot of people have scars, I think it is rude to point them out and ask what happened, unless they bring it up.

My friends and coworkers are rude AF... They will totally ask you about scars...
I can understand though, people are just curious. Just tell them a joke, and they'll usually back off. If not, then just walk out because people that can't respect your boundaries are not worth your time...

[SuchLL]

@SuchLL Glad to hear things are going well! I'm low-key inspired by how well your tibial LL is going. Makes me a bit more confident in going forward with mine.
I am so curious about scarring. Does Paley have pictures of incision scars post consolidation? If you get it, can you share it with us?

My friends and coworkers are rude AF... They will totally ask you about scars...
I can understand though, people are just curious. Just tell them a joke, and they'll usually back off. If not, then just walk out because people that can't respect your boundaries are not worth your time...

Glad you’re a bit more confident!

cyborg4life has a video of his tibia scars. They are barely noticeable: https://m.

People with light skin usually have better scars. You probably don’t need to worried about scars at all if you have light skin. I’m Asian so my scars may not look as good as his, but at the same time I have thick and dark hair, which can help hide the scars better.

Even people who are considering tibial lengthening don’t know how tibia scars look, I think our average friends won’t know it either and will believe whatever stories we tell them, unless they also had the same surgery

[SuchLL]

Nov 14, 2021. Lengthening day 27:
Two days ago I started to feel nerve pain on the front of my left foot when PT stretched my calf. At home I used a different way to stretch and it didn’t cause any nerve pain. I will tell PT to try a different way to help me stretch next time. Hope I don’t develop nerve pain because my stomach is not as strong as last year so taking gabapentin won’t be fun.

My left leg is getting more flexible than a few days ago. I can’t tell if this is good or bad thing because it usually shouldn’t be more flexible unless due to pre consolidation or more intense stretch. My stretch routine didn’t change. I just wear splints and try to keep my knee straight for longer hours now. Hope it’s just the splints making my left leg more flexible.

I finally hit 2 cm today! It feels like a milestone lol.

[ask.me]

Congrats on your 2 cm! 

When is your next x ray? Luckily, I don’t think the bone consolidates that quickly assuming you go every 1-2 weeks, so if you are prematurely consolidating they’ll probably just ask you to increase distraction speed (I’m not a doctor though, just guessing).

People with light skin usually have better scars. You probably don’t need to worried about scars at all if you have light skin. I’m Asian so my scars may not look as good as his, but at the same time I have thick and dark hair, which can help hide the scars better.

Even people who are considering tibial lengthening don’t know how tibia scars look, I think our average friends won’t know it either and will believe whatever stories we tell them, unless they also had the same surgery

hahah true.

I have skin type 4 (asian skin) too and I have no hair on my legs.  I heard onion extract is good for that. I’m going to see a dermatologist to see if there’s anything I can do to prevent scarring.

[SuchLL]

Congrats on your 2 cm! 

When is your next x ray? Luckily, I don’t think the bone consolidates that quickly assuming you go every 1-2 weeks, so if you are prematurely consolidating they’ll probably just ask you to increase distraction speed (I’m not a doctor though, just guessing).

hahah true.

I have skin type 4 (asian skin) too and I have no hair on my legs.  I heard onion extract is good for that. I’m going to see a dermatologist to see if there’s anything I can do to prevent scarring.

No matter how light the scars are, people can still see them by looking closely, so we need a story to tell anyways… And I think longer tibias with some scars still look more aesthetically pleasing than short tibias. That’s probably why some girls choose to do tibias. (2 out of 3 Asian girls I met at Paley’s institute did tibias last year). I would say, don’t worried about the scars lol 

[SuchLL]

Nov 17, 2021. Lengthening day 30:
Just had xrays today and they looked very good. I was worried about my left leg since it’s getting more flexible for no reason… I guess wearing splints and keeping knees straight do help. Doctor said many people at this stage (2.15 cm) are already tight but my flexibility was still fantastic. I took bath with epsom salts each time before stretch and lengthening and I think it helped a lot. Hope I can reach 6 cm but I’ll be happy with 5 cm too. My right fibula is growing fast but doctor didn’t tell me to speed up lengthening so it’s probably fine for now. I still almost don’t have any pain except my right calf feels sore sometimes.

[ask.me]

Glad your Xrays are looking good! That must be a huge relief. I can’t wait for you to reach your goal, or 5 c.m.! My doctor said I should be able to do 6 c.m., maybe 7 c.m. because I’m almost at 100% flexibility right now.

I was thinking of doing LL without help, and maybe hiring a nurse for the first three weeks, if necessary, and maybe the last few weeks too? idk. Do you think you could have managed by yourself after being released from the hospital? How did you manage the first few weeks?

I’m trying to train right now with the pre-op PT, but it’s so boring.

[SuchLL]

Glad your Xrays are looking good! That must be a huge relief. I can’t wait for you to reach your goal, or 5 c.m.! My doctor said I should be able to do 6 c.m., maybe 7 c.m. because I’m almost at 100% flexibility right now.

I was thinking of doing LL without help, and maybe hiring a nurse for the first three weeks, if necessary, and maybe the last few weeks too? idk. Do you think you could have managed by yourself after being released from the hospital? How did you manage the first few weeks?

I’m trying to train right now with the pre-op PT, but it’s so boring.

Thanks! Yes it’s a huge relief…

My parents are taking good care of me so my experience in the first few weeks is probably not helpful. If I live in a wheelchair accessible place (like one of Paley’s recommended hotels where they also provide free shuttles to Paley’s institute) I can probably do this alone with caregiver for the first week or two. It’s going to be tough but I think I should be able to do it.

[SuchLL]

Nov 21, 2021. Lengthening day 34:
Hit 2.5 cm today! If I only do 5 cm then I’m already half way through. I feel I should be able to do 6 or more if I don’t run into complications such as pre consolidation or nail bending. Both of my legs are actually a bit more flexible than a few days ago. I only wear splints for probably 12 hours a day, but when I wear them I try to keep my knees as straight as possible. Sometimes I lie on the bed on my stomach and hang my lower legs off the bed. I only stretch 3 times a day (including 1 time with PT), so the splints are probably doing good job

[silverlining]

Hi SuchLL I'm interested in doing tibia lengthening in future but I heard rumors about long term or permanent knee pain associating with tibia lengthening. Can you comment on this?

[SuchLL]

Hi SuchLL I'm interested in doing tibia lengthening in future but I heard rumors about long term or permanent knee pain associating with tibia lengthening. Can you comment on this?

Hi silverlining, I trust paley institute and they say it shouldn’t cause permanent knee pain. However I can imagine someone suffering from knee pain for many years after the surgery if they don’t listen to doctors during lengthening, they don’t work hard building leg strength back, they don’t go to PT, or simply the surgery itself isn’t done correctly. We can get knee pain from femur lengthening too because of the same reasons. In fact for non athlete knee pain is often caused by IT band, hip muscles (ex, gluteus medius) which are related to femur lengthening. Upper legs and hips also affect knee a lot.

When tibias are too long comparing to femurs, we can develop knee pain more easily than others because of long tibias, that’s why it’s usually best to do femur lengthening if we only want to lengthen one segment, unless we have long femurs to begin with.

[6CMFemurs]

Hi silverlining, I trust paley institute and they say it shouldn’t cause permanent knee pain. However I can imagine someone suffering from knee pain for many years after the surgery if they don’t listen to doctors during lengthening, they don’t work hard building leg strength back, they don’t go to PT, or simply the surgery itself isn’t done correctly. We can get knee pain from femur lengthening too because of the same reasons. In fact for non athlete knee pain is often caused by IT band, hip muscles (ex, gluteus medius) which are related to femur lengthening. Upper legs and hips also affect knee a lot.

When tibias are too long comparing to femurs, we can develop knee pain more easily than others because of long tibias, that’s why it’s usually best to do femur lengthening if we only want to lengthen one segment, unless we have long femurs to begin with.

Hi SuchLL,

Congrats on reaching the halfway mark!! Interesting to hear having long tibias in relation to femurs can be a culprit in the development of knee pain, is this something they told you at Paley Institute?

[SuchLL]

Hi SuchLL,

Congrats on reaching the halfway mark!! Interesting to hear having long tibias in relation to femurs can be a culprit in the development of knee pain, is this something they told you at Paley Institute?

There’re studies showing significant correlation between increasing tibia femur ratio and knee arthritis.

[ask.me]

Hi SuchLL I'm interested in doing tibia lengthening in future but I heard rumors about long term or permanent knee pain associating with tibia lengthening. Can you comment on this?

I actually went over this briefly here:
http://www.limblengtheningforum.com/index.php?topic=68402.0
So there’s a few ways that LL can lead to arthritis. For example, if your legs aren’t aligned properly by the surgeon. If your surgeon does everything right, then there’s still a chance that the muscle tension caused by the lengthening itself can damage the cartilage which can lead to arthritis. That’s why it’s important to go slow and listen to your body. You need to lengthen at a rate that your body can catch up. So this is especially a risk for people that aren’t very flexible to start.

[SuchLL]

Nov 22, 2021. Lengthening day 35:
I’m on antibiotics now because one of my incisions is infected. It doesn’t look very bad though and it’s already less painful. I also just discovered one area on the outside of my left lower leg is numb. I saw doctor today because of these two issues. Doctor said numbness is fine, but if I feel it’s getting harder to move my toes then I need to stop right away for at least 3, 4 days. He said my toes looked strong to him so I could keep lengthening 3 times a day. I just need to pay attention to my toes. He also said it’s up to me if I want to take gabapentin since the area is numb but not painful. I only feel sharp pain occasionally for a few seconds so I’ll hold off on gabapentin. My PT taught me how to stretch nerves. It’s painful to stretch nerves so I felt nerve pain during the first few reps. After the first few reps the nerves were stretched so the pain was gone. I want to share how I stretch nerves but it’s really hard to put it into words. Stretching the nerves on outside lower legs involves whole body movements from head to toes lol…

The good news is (well it may not be good news…), last year I had the same issues during femoral lengthening, got infection and nerve damages on the same left leg so I’m kinda used to these complications. Last year the numbness didn’t get worse so I hope it won’t get worse this year either. 

[ask.me]

Sorry to hear about the infection. I’m a bit surprised it got infected so far out from the surgery. How painful was it before the antibiotics? Nevertheless, glad to hear you’re feeling better!

I want to share how I stretch nerves but it’s really hard to put it into words. Stretching the nerves on outside lower legs involves whole body movements from head to toes lol…

I’m trying to imagine what this looks like .

I’m following this story closely haha. Hope it’s not too much. Cheering you on and sending you good vibes!

[SuchLL]

Sorry to hear about the infection. I’m a bit surprised it got infected so far out from the surgery. How painful was it before the antibiotics? Nevertheless, glad to hear you’re feeling better!

I’m trying to imagine what this looks like .

I’m following this story closely haha. Hope it’s not too much. Cheering you on and sending you good vibes!

Thanks! The infection was from sutures and I think it can take weeks or months to dissolve the sutures. It was painful only when I touched it so it’s not bad. Antibiotics is working and pain is already gone (no pain even when I touch it). Unfortunately the scar from that incision will probably look worse 

[SuchLL]

Nov 28, 2021. Lengthening day 41:
3cm today! (If I’m not pre consolidated.. my fibula is growing fast lol). I can still get my dorsiflexion to 20 degrees, but it takes a lot more force as I’m getting tighter. The numbness area didn’t progress. The occasional sharp pain I felt in that area was also gone. I do about 60-80 reps everyday to stretch nerves and it probably helped. The infection was also cleared. I’ll see doctor again in 3 days and hope my xray looks good!

[SuchLL]

Dec 1, 2021. Lengthening day 44:
It’s already December  I’m at 3.2+ today. Just took xrays and had appointment with doctor. He said my bones were healing well and it probably wouldn’t take much time for me to walk unassisted after lengthening, but at the same time I’m still at risk of pre consolidation. He said I was tighter than last time but still ahead of the game. I’m thinking about stretching one more time a day. So far tibia lengthening is still a much easier process than femurs for me, but I have to admit it’s painful to stretch calf muscles because they are very strong muscles.

Right now I’m still relaxed everyday. Just play games, read books, watch shows, and have a good excuse to not do any work and just stay in bed almost all day lol… The only thing I don’t like is the splints… but I just have to wear them.

[SuchLL]

Dec 6, 2021. Lengthening day 49:
I’m at 3.6+ cm today. Two days ago I started to hear click sound from the right nail while lengthening. It clicked about one time during each turn. Yesterday it clicked three times, and this morning it clicked four times. Click sound is a sign of pre consolidation so I let the doctor know and took xray today. He said both nails had the same lengthening distance and my bones weren’t pre consolidated. The nail wasn’t bent either. (sometimes bent nail makes click sound.) He told me to take xray again a week from now, or come back earlier if I start to hear more clicks. If both nails are still same then I won’t need to worry about the clicks. In the afternoon I put the lengthening machine to a different position next to my right leg and the nail didn’t make any click sound. I will try the new position again tonight and hope the sound will disappear.

[6CMFemurs]

@SuchLL: glad the nails are still moving!! How are you feeling in terms of flexibility and pain at this point. Have you been able to stand at all yet and enjoy your new 1.5 inches??

[SuchLL]

@SuchLL: glad the nails are still moving!! How are you feeling in terms of flexibility and pain at this point. Have you been able to stand at all yet and enjoy your new 1.5 inches??

I’m getting tighter but I’m still able to pull my feet upward for 20 degrees. It takes more force and time though. I don’t have any pain, except it’s painful to stretch calf muscles. The occasional nerve pain outside my left lower leg was also gone. It’s hard to stand up straight when I have to use walker and use my arms to support a lot of my body weight. My calf muscles are also getting tighter which makes it harder to keep my whole body straight. I think I won’t be able to enjoy new height until my bones are consolidated.