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[femurs2022]

I think this is day +30! I had a follow up appointment yesterday and my left leg is at 5 cm and right leg is at 1.6 cm. This was actually the first time the XR measurements exactly matched the amount I thought I had lengthened. I again have no major updates. Thankfully I feel like things are going smoothly. There was some concern that my right leg is at risk for premature consolidation so I have been told to lengthen at 1 mm per day instead of 0.75 mm per day. I continue my slow process of lengthening at 0.5 mm per day on the left though I may ask if I can increase that to 0.75 mm per day at some point since my nerve pain seems to have improved greatly. Pain wise I am doing much better. For pain management I'm currently taking celebrex 200 mg every 12 hours, lyrica 75 mg every 8 hours, and tylenol 1000 mg every 8 hours. I take about 2.5 mg of oxycodone most days (1/2 a pill) if/when pain interferes with sleeping or PT.

I'll try to upload some pictures of my x-rays below (I'm not the best photographer though). The left leg x rays are the first two.

[SpeedDialer]

Thank you! Yeah I'm about 100 lb. I'm not currently using a walker for more than a few steps per Dr. Assayag's recommendations. I think it is pretty surgeon dependent in terms of whether or not they allow you to use a walker or crutches while lengthening with precise nails.

I would ask your surgeon about recommendations regarding weight loss. I will say that I lost >10 lb after each surgery and I felt so much better as soon as I was able to eat more and get closer to a healthier weight. Not having an appetite but knowing you need to eat has been one of the more difficult parts of this process for me. Also the only times there have been any concerns mentioned about my bone regenerate was when my weight was <90 lb so I do feel like the weight loss/lack of adequate nutrition was contributing to that.

ty!!! When you don't feel like eating much, what kinds of foods should you prioritize eating a small amount of for the bone growth and some vitamins? Not sure, I'm assuming calcium containing foods (ex: milk, chia seeds)? Or something else?

Ex: if don't have an apppetite and only feel like eating a small amount, what do you guys think gives you the best bang for your buck for eating just a small amount of food?

[femurs2022]

I haven't updated in a while but I'm back with an update I finished lengthening the left leg I think 7 weeks ago and the right leg a few days ago. I stopped at 62 mm and I'm thrilled with that. For a variety of reasons I am very happy I did not feel the need to go all the way to 8 cm. I'm allowed to fully weight bear on the left and partially on the right so I can walk very easily with crutches with an essentially normal gait. My range of motion on the left is actually better than it was before surgery except for my quads. On the right my hamstrings are tight and I can straighten my leg completely lying down but not standing (I'm almost there though). I'm still doing about 2 hours of PT/stretching a day on my own but now that I'm done lengthening I can feel the exercises get easier instead of harder every day.

I don't want to paint too rosy a picture of this surgery/process though. I had no idea going into this just how emotionally difficult it would be for me and I don't think I would have wanted to know. I can't really describe how difficult the past few months have been for me, I was profoundly depressed and anxious for the first time in my life. I hesitate to include this part but I did even have thoughts of suicide at one point. I think a lot of it was the opioids (which I did need for pain in order to sleep and participate in PT) since I am feeling so much better since I stopped them. Within a few days of discontinuing the oxy it was like everything was bright again (even though the first 48 hours without it I felt worse). There also were outside factors in my life as well that may have had some impact. I just don't want anyone reading this though to think that if you do the surgery in the US with precise nails you will breeze right through it. It is still difficult though I am not exactly sure why it is so hard. I thought once you get past the initial pain from surgery it gets easier but at least for me it only got much harder.  I would not have gotten through this without significant support. I personally would strongly recommend if you are doing this surgery that you either have a very supportive partner or very supportive friends/family or both. I know some people do this on their own but I certainly could not have done so. I would also recommend making sure you completely trust your surgeon and feel comfortable with them. The fact that I trust Dr. Assayag was probably the one other factor besides having a supportive partner and supportive friends that got me through this. On a happier note, I am so happy with my new height and it has been so much fun ordering new clothes since all my skirts/dresses are too short now  . I think the end result was completely worth the suffering even if it didn't seem like it at the time.

[thankscience]

Congrats! Glad you got through it okay 

Do you think you will return to your pre-LL athleticism?

[femurs2022]

Congrats! Glad you got through it okay 

Do you think you will return to your pre-LL athleticism?

Thank you! I don't see why I wouldn't be able to. Other than some muscle weakness on the left my left leg feels completely functional and normal. I'm hoping my right leg will get there as well within a few weeks.

[tallmen]

Congratulations!

Are you using a walker or crutches? When did you start walking with support?

[femurs2022]

Congratulations!

Are you using a walker or crutches? When did you start walking with support?

Im using crutches. I was cleared to fully weight bear on the left at my appointment 5 weeks after I stopped lengthening on the left. That night I tried the walker but then immediately switched to crutches because I have never liked the walker. I’m mostly using crutches now, I only use the wheelchair in the bathroom after I take a shower because I’m scared of slipping on the wet floor right now.

[femurs2022]

Just wanted to provide a brief update. I stopped lengthening 2 months ago and I’ve been walking without crutches for about a month. My gait has pretty much normalized. I think it would be impossible for someone who doesn’t know me well to notice anything is off about my gait but people who do know me very well do notice a slight limp. I often actually forget I have had the surgery. I’ve realized if I’m not paying attention I just automatically walk up and down the stairs at work instead of taking the elevator. My only major issue is significant lower back pain when standing for prolonged periods of time (as in hours at a time, walking and standing still briefly is fine). I’m on my feet at work for >70 hours per week and it is very challenging to always have pain after prolonged standing. I also have aching in my lower legs and feet with standing. I’m hoping this improves soon since it really can be excruciating to stand for more than a few hours. I think I’m seeing some improvement but I’m not sure if it is just because I’m taking more breaks to sit down. I really haven’t been doing much PT at all since I’m back to work full time and have minimal free time but I’m working on stretching more at home on a daily basis. I’ll try to remember to post some pictures of my x rays.

[Growing Experience]

Hi femurs2022,

Thanks for providing us with the latest update! Good to know that you've recovered well and you're able to work long hours while standing.

I believe you're at the 6th month mark (post op) right now. My question is - do you ever feel the nails or screws inside you? while walking up and down stairs, while sleeping on sides ?

Also, are you able to drive a car comfortably at this point?

[femurs2022]

Hi femurs2022,

Thanks for providing us with the latest update! Good to know that you've recovered well and you're able to work long hours while standing.

I believe you're at the 6th month mark (post op) right now. My question is - do you ever feel the nails or screws inside you? while walking up and down stairs, while sleeping on sides ?

Also, are you able to drive a car comfortably at this point?

You're welcome. I'm 5 months post op if I am counting correctly. I do not feel the nails/screws inside me. For a time I think I could feel the screws when I would lay on my side while sleeping but I haven't felt them in a few weeks. I don't feel them walking up or down the stairs. I would keep the nails/screws in indefinitely but I don't want to have any issues if I need an MRI someday. That said, I have no plans to get the nails out anytime soon. My femurs actually feel completely normal. It is just my lower legs (calves mainly) and feet that hurt sometimes (my feet feel fine if I wear supportive shoes). My back pain has mostly resolved thankfully.

I have been able to drive comfortably for at least 6 weeks.

[femurs2022]

I'm a little over 6 months post op so thought I would provide an update! I always wondered reading diaries when exactly a patient is able to walk and have it look and feel completely normal. I would say for me (keep in mind I only did 6 cm) it was exactly at the 6 month mark from surgery. My gait "looked" normal before that but it wasn't until 6 months post op that my legs and walking in general felt completely normal. Currently, I am able to walk as long as I want without my legs getting tired, I can walk and run up and down the stairs but sometimes hold the banister depending on what shoes I am wearing (I worry about slipping and breaking a nail). I'm able to run but it still feels and looks weird, I can sort of jump. I'm not really able to hop on one foot yet. I have no more back, leg, or foot pain. The only discomfort I have is sometimes my knees feel tight if I have been less active than usual. My range of motion is back to my baseline excluding my quads which are still somewhat tight. That said, I haven't done any sort of PT or stretching in over a month so I would likely have improvement in that if I would actually stretch.

A close friend asked me today if I would do the surgery again. I can't imagine ever being brave enough to go through this again (I can't even imagine even agreeing to have surgery to get the nails removed anytime soon). I don't think about my height at all anymore which was my goal so I guess you could say the surgery succeeded. Honestly, my life just feels completely normal and most of the time i forget I even did this.

[femurs2022]

Here is my 7ish months post op update!
I think the big change from 6 months post op is I can now run and it looks and feels normal most of the time. I don’t think I have any sort of physical limitations at this time. I can sprint and jump as well. I think it would be impossible to know I had any sort of procedure on my legs unless one were to look at x rays. My scars have mostly faded enough that I don’t think they are noticeable (my skin really doesn’t scar though, I had a bad burn on my hand that healed with minimal scarring and a large laceration on my leg that eventually healed without a scar).

I would say I’ve completely recovered excluding the fact that I do have some edema in my legs most of the time. It goes away when I have a day or 2 off from work but when I’m on my feet all day it comes back. It doesn’t bother me but it is something I notice.

People keep telling me I seem happier but I’m not 100% sure if it is related to the surgery or something else.   It feels like doing this has taken a big weight off my shoulders. It’s also a weird feeling though because I don’t have any height dysphoria anymore and i cant really remember what it was like to have that so it feels totally crazy that I did this. Even though I know I had thought about it for a long time and had a really good reason to go forward with it.

[4cm]

Thank you for sharing

[SpeedDialer]

People keep telling me I seem happier but I’m not 100% sure if it is related to the surgery or something else.   It feels like doing this has taken a big weight off my shoulders. It’s also a weird feeling though because I don’t have any height dysphoria anymore and i cant really remember what it was like to have that so it feels totally crazy that I did this. Even though I know I had thought about it for a long time and had a really good reason to go forward with it.

I got about two inches taller and I also feel a big weight is off of my shoulders, it feels great when I stand next to other adult men now. I'm still shorter but I feel alot better. I'm still lengthening a bit more but might stop soon

I'm thinking of doing precise 2.2 tibias with Dr. Giotikas then coming back to the United States and doing nail removal with Dr. Assayag in Baltimore. I heard that for nail removal, you have to recover for about a week. Where in Baltimore do you think you would stay if you did nail removal with Dr. Assayag?

I have some relatives a few hours drive from Baltimore that I might also be able to stay with but I'm not sure if it is better to stay in Baltimore when recovering from nail removal

[Ceiling]

Congratulations, Femurs2022!  Thank you for sharing your experience!

As you posted, you flew back home when you were at Day +14 and +15, may I ask about the time required for visits/PT?

1. Did you need to come back to Baltimore frequently to check up with Dr. Assayage?
2. Do you have your PT in your local clinic? If so, do you feel confident about them compared to the PT who is more experienced with LL around Sinai?
3. How long do you have to do PT in the clinic every day/week for the six-month period? 

My questions are mostly about time management for the six to eight-month course since my daily working hours are pretty long (WFH).  I would appreciate any of your input!

Days +14 and +15

I'm very grateful that I am home! ...

[femurs2022]

Congratulations, Femurs2022!  Thank you for sharing your experience!

As you posted, you flew back home when you were at Day +14 and +15, may I ask about the time required for visits/PT?

1. Did you need to come back to Baltimore frequently to check up with Dr. Assayage?
2. Do you have your PT in your local clinic? If so, do you feel confident about them compared to the PT who is more experienced with LL around Sinai?
3. How long do you have to do PT in the clinic every day/week for the six-month period? 

My questions are mostly about time management for the six to eight-month course since my daily working hours are pretty long (WFH).  I would appreciate any of your input!

Thank you!

1. I had to go back to Baltimore every 2 weeks during the lengthening phase. Since I stopped lengthening I haven't had to go back and I just get x-rays locally.
2. Yeah I had PT locally. I thought my PT locally was not very helpful. But I had worked with a PT in Baltimore with a lot of experience with limb lengthening prior to returning home so I just made my own stretching schedule with the exercises he taught me. I did a minimum of 2 hours of PT a day on my own and went to the local clinic for PT 1-2x a week.
3. I stopped doing PT in the clinic as soon as I stopped lengthening so around 3 months post op.

I was able to work from home within 2-3 days post op. I wasn't super productive but I could get by. Basically anything that needed to get done got done but nothing else.  I went back to work in person as soon as I was using crutches which was around 3 months post op and had no issues working >60 hours per week. I did have both the time and privacy at work though to do my 2 hours of daily stretching in small chunks of time while I was at work so I didn't need to stretch once I got home.

[Ceiling]

Thank you!  Your answers are super helpful.  I appreciate you taking the time to explain. 

[stretched]

Was there ever a point during the surgery where you would say the pain was intolerable?

[femurs2022]

Hello, I just thought I would post another update
I think I'm about 9.5 months post op right now from surgery. Other than being 6 cm longer my legs are 100% back to normal. Unless someone took an x-ray of my leg I don't think it would be possible to know I have had limb lengthening surgery. I've definitely gotten the last bit of flexibility back that I was missing in my quads. I've gone skiing twice so far this winter and it felt completely normal. I was sore each night but just the usual soreness. I didn't try anything crazy but I was able to keep up with my friends.

[saltedchocolate]

Hello, I just thought I would post another update
I think I'm about 9.5 months post op right now from surgery. Other than being 6 cm longer my legs are 100% back to normal. Unless someone took an x-ray of my leg I don't think it would be possible to know I have had limb lengthening surgery. I've definitely gotten the last bit of flexibility back that I was missing in my quads. I've gone skiing twice so far this winter and it felt completely normal. I was sore each night but just the usual soreness. I didn't try anything crazy but I was able to keep up with my friends.

congratulations!

[Yau]

Hello, I just thought I would post another update
I think I'm about 9.5 months post op right now from surgery. Other than being 6 cm longer my legs are 100% back to normal. Unless someone took an x-ray of my leg I don't think it would be possible to know I have had limb lengthening surgery. I've definitely gotten the last bit of flexibility back that I was missing in my quads. I've gone skiing twice so far this winter and it felt completely normal. I was sore each night but just the usual soreness. I didn't try anything crazy but I was able to keep up with my friends.

You are about 1 year post op right now from surgery. How are u now? Everything goes well?

[darthmaul]

1 year post op? I would like to see some videos of your walking

[sphenopetroclival]

If you have recent imaging data please put it at this thread. Redact any information that could be used to dox you.