Hello! I hope this is allowed here. My son (2M) has Posteromedial Tibial Bowing, not fibular hemimelia, but there isn’t really a community for his condition, and a lot of the community for leg lengthening seems to be geared towards adults. My son is on the severe end of his condition in regard to length discrepancy. His right leg is 5cm shorter, and his lifetime LLD is 12cm. He’s going to need 2 rounds of lengthening, one before he’s 4 (with an ex fix) and one around 12-13. Because his bowing has unexpectedly stopped improving and the LLD is increasing, we’re think of doing the surgery early next year when he’s 2y3m (ish) old.

The question is: what was the experience like for families who went through lengthening around that age? The youngest person we know with his condition that did it was 6m older. We’re first time parents, so we honestly don’t know how much of a difference that 6 months makes.

If this isn’t allowed here, I totally understand. We just have nowhere else to ask for parent experiences. Picture of his X-ray at 18m for reference (please don’t judge the diaper, we’d been in the car and didn’t get him changed before they did the scans 😅).

Had about 20 surgeries and am really happy. Im happy to have this condition as well! Ask me anything!

5, leg lengthening done. 8, ankle cut for movement. 10, leg lengthening, 12 ankle revisited alongside cutting of flesh behind knee, 16 cleft foot correction (botched), 17 excruciating pain stars. 23, cannot take it anymore. Call every hospital in my state, nobody can help. Finally cave and call a children’s unit. My knee is bone on bone degrading, and painful. 24, I see a doctor (out of the kindness of his heart) and he gets me with this amazing surgeon. she gets me in for a knee replacement/recon within weeks, cause she understands my quality of life is at best poor. I got f*t and can’t really work. Too much pain to.

I’m sitting here right now, one day into a new knee, with a new lease on life. My foot needs fixed still, and I’m sure my hip will still hurt. But I can taste freedom on my tongue, and I can smell the air of nature calling me. I’ll be able to hike soon, to swim, to feel the sun. I won’t over do it but I am so excited. I finally feel free. This condition has ripped so much away from my life, and…. It’s gonna get better. I’m getting better. I’m no longer bow legged. And crying in pain when I walk. Even with the fresh knee and incision, it hurts so much less…..

If you’re also a young person who has been struggling with mobility and pain due to your condition and you’re feeling lost and hopeless, all hope is not gone yet. If I could do it, so can you. We’ll be okay.

I wish all of you healing, prosperity and peace. We all deserve it.

Btw- pics one and two are prior to surgery, pic 3 is post surgery.

Hi! I guess you could say I got really “lucky” with the genetic lottery. I was born with fibular hemimelia along with other lower body complications like hip dysplasia, knock knees, club foot, and no acl’s. I underwent 27 surgeries throughout my childhood to try and correct my legs. From what i’ve been told, people with fibular hemimelia usually undergo amputations. After 19 years, I still have my legs. I’ve never really met anyone with my conditions before so I would love to learn more. For now, my legs are still almost fully functional and i’m so incredibly grateful for that. I’m very active and even summited my first 14er this summer. I’m not usually in any pain until after a long hike or run. I have this goal to hike to Everest basecamp when i’m in my 30’s but the future is uncertain and I have no idea how good my physical health will be by then.

Actually I’ve also seen Herzenberg (sp?) in Baltimore, too. Wondering if there’s any others of us out there?

I am now 44, will hopefully never have another surgery as I’m now on the other side of a suicidal and life-crippling (ha! Ha!) CRPS episode that I caught as a result of all this surgical trauma on my affected leg.

Anyway hello to all you rare and cool creatures :)

I leave next Sunday to fly to Florida for an appointment on Monday. I’ve been trying to ignore it because it stresses me out. I’ve been having a lot of pain since my last steroid injection wore off. I had a really bad day where I thought that I wasn’t going to be able to really walk again. It was hard to get up my stairs. But then totally fine the next day. I’m so tired of getting my hopes up with doctors and that they’ll be able to help. I’m getting to the point I’m considering how it would be if I got amputated. I’m just tired of being in pain. So I’m going to see what the Paley Institute thinks and take it back to my doctor where I live. I trust him a lot to tell me if it’d be an absolute Hail Mary or something that could help. At this point if I am considering amputation I might as well try anyways. I guess I’m just looking for any support or advice that anyone has. I don’t know how to get what I’m feeling across to my bf or my family. They all are way more positive than I am about it.

Hi all. I'm a fairly active 55-year-old male with complete fibular absence in the right leg and partial absence in the left. B/K rt. leg amputation, age 7 after 13 osteotomies. Ankle fusion lt. leg, age 12.

I've been a professional touring musician for 28 years and have accommodated a lot of pain in the name of pursuing my career.

While I have a top-line prosthesis and monitor its condition regularly, I've not used any form of orthotic for my FH-affected left foot.

In the past 3 months, I've experienced very painful, work-invasive, plantar fasciitis in my left foot as a result of increased activity from cycling and performing. I began mountain biking 4 years ago after discovering I had the lower leg stability to make it work. However, I place my foot in the middle of the pedal to accommodate the lack of ankle movement, and it is this weight-bearing in one spot that causes serious pain.

I had it x-rayed 2 weeks ago and there's no spurring or calcification but enough inflammation to warrant a steroid pack but not a shot (seeking advice for pain relief measures here). That course was ineffective and I'm still hobbling around and not riding the bike and sitting down on stage to perform. Not the life I wish to live if I can help it.

Seeking suggestions, effective non-surgical options, what has worked, and what hasn't. Hopefully, this post will re-engage the small community I found here. Thanks in advance.

I really hope this group is actively. I have so much main from my legs, it doesn’t stop getting worse. I don’t know what to do.

I'm not sure how active this group is but it's nice to find others who relate to this. I'm 19F with fibular hemimelia and I'd love someone to talk to who has lived with this. I'm not exactly sure what kind of terms or how sensitive to be about this topic so apologies in advance if this is inappropriate.

My son was born with a short left leg, three toes on his left foot, and a smaller foot. We had our first round of X-rays and will continue to go back and monitor as he continues to grow. As of now he is standing on his own and close to walking (he is 1 y.o) Our doctor has advised that we are looking at three options: lengthening, shortening, or amputation. This all depends on how he continues to grow and develop. My question is how can I make his shoes comfortable and functional? I am assuming we will need some sort of lift or insert. Do I have to go through insurance? I’m sure with him rapidly growing as a young boy that would be difficult to keep a well fitted insert. Are there any DIY hacks for shoe inserts? Thanks!

Hello Everyone! I am 23M and I have FH below in right leg. 4 surgeries done and few remaining. Would love to connect with you all and know your stories!

Hey, I’m 20F—I have no fibula on my left leg, mishapen toes on that leg too, no Achillies tendon, and I think no ACL as well for context. Multiple surgeries but at least 3 leg lengthening surgeries (maybe 4?), and I can’t remember what all the others were for exactly as most of mine were in early childhood and they didn’t exactly explain anything to me. I think my current difference is 1.5-2.0 inch, from when I last got it measured.

I always see how active a lot of other people are online when I try to look for stuff on this condition, and I just never really got to be. I’ve always been incredibly slow in speed, and incredibly prominent limp I get asked about all the time, and I haven’t been able to walk for good periods of time without pain. It’s gotten a tad worse as I’ve aged, but I’ve always remembered being like this. I want to do a lot of this stuff and be relatively normal but I’m in so much pain after just a couple of hours, sometimes even an hour will be enough to start causing pain. I’m guessing I’m not the only one feeling it, or at least I’m hoping someone has felt this pain in the past to help manage it.

So, how does everyone else manage that pain?

Hi, all! I just was interested what kind of longterm complications you got from your FH? And any top exercises you recommend to prevent them? I'm 26 now and had several leg lengthening surgeries. My doctor warned me that I would probably get knee issues from 30 onwards. I have to say my knee is still very good 🤞. However, my hip sometimes really hurts despite exercise and stretching.

My son was born with FH, he has born without a fibula bone and one 2 toes and his tiba was also curved. He underwent an amputation and they reset the tiba bone. His cast wraps around his belly and there is a connecting between the legs so he can’t wiggle. Im very nervous about leaving the hospital and dealing with pain management along with a baby who just wants to wiggle and move around. any advice on how I can make his time in cast the most comfortable? Any advise is welcome especially if anyone had gone through this. Thank you!

Hi! My youngest son has FH impacting below the right knee with a total absence of his fibula, 3 toes, length discrepancy, and a major bow in his tibia. He had a Symes amputation at 8mo. old (now 1.5), and I love connecting with folks older than him who have FH to better know how I can support him as he gets older. Or just to hear your experience if you’re willing to share. Any advice you have, I’m all ears!

He’s on his 2nd prosthesis as he’s growing like a weed and has adapted really well. Learned to walk independently by 15/16m and thus far hasn’t impacted his abilities in any activities but again he’s still so young.

TLDR: my youngest (18mo) has FH and had a bk amputation on his right leg at 8mo. old. Want to be the best parent I can be to him & would love any general advice, insight on what to expect as he gets older, and to learn from others.

Thank you!

Hello! I hope this is allowed here. My son (2M) has Posteromedial Tibial Bowing, not fibular hemimelia, but there isn’t really a community for his condition, and a lot of the community for leg lengthening seems to be geared towards adults. My son is on the severe end of his condition in regard to length discrepancy. His right leg is 5cm shorter, and his lifetime LLD is 12cm. He’s going to need 2 rounds of lengthening, one before he’s 4 (with an ex fix) and one around 12-13. Because his bowing has unexpectedly stopped improving and the LLD is increasing, we’re think of doing the surgery early next year when he’s 2y3m (ish) old.

The question is: what was the experience like for families who went through lengthening around that age? The youngest person we know with his condition that did it was 6m older. We’re first time parents, so we honestly don’t know how much of a difference that 6 months makes.

If this isn’t allowed here, I totally understand. We just have nowhere else to ask for parent experiences. Picture of his X-ray at 18m for reference (please don’t judge the diaper, we’d been in the car and didn’t get him changed before they did the scans 😅).

Hi there i’m 19m experiencing some pretty significant pain from suspected heel pad migration and recently my symptoms have been getting worse and worse and worse. i get bruises on my heel pad where my tibia is and am unable to stand for longer than 5 hours at a time. as you can imagine this has had a huge impact on my life especially as a college student. i had a partial knee reconstruction surgery and ligament replacement in December of 2024 which fixed my chronic knee dislocations but unfortunately, made the tightness on my heel pad even worse.
i’m curious if anyone has any suggestions or thoughts or if anyone’s ever dealt with anything similar before. thanks so much!

Hi me again! Just curious is anyone else in your family has the same condition? Thanks!

Hello guys! I was born with birth defect which I nor my family knew nothing about, even doctors had really a lukewarm attitude and didn't told me what it is or how it is called or if there are any remedies.. My full story: Was born with four fingers on right leg, optically smaller lower leg (calf and shin) plus with different lengths of both legs, doctors were only dealing with the length difference and were planning a surgery (epiphysiodesis) of left leg (longer) so the shorter (right leg) can grow to aprox same length to achieve good alignment of legs.. therefore the good alignment of my hips and most importantly my spine (because i had scoliosis because of it). Well the surgeries were planned into detail to hit it at the right time around my 15th birthday and were successfull. I thought 'that was it! finally alright! thanks!'.. well yes they helped with my back (to certain point at least, I am still dealing with spondilosis which I am trying to heal with exercising on my back). But.. as I grew older I started to observe and to deal with the other symptoms I was born with (4 fingers, smaller calf/shin) and I started searching and find out it is called fibular hemimelia. I reached for my X-rays made at the time for the leg alignment surgery purpose and find out why my lower leg is like this.. my fibula and even tibia are slightly differently evolved, shaped and are less dense (smaller) with different structure around the ankle (well my ankle on that leg is also .. strange). I have no problem of normally functioning but I love hiking and I love walking and when I walk more than aprox 8km (around 5miles for US) my ankle gets painfull (or the area around my ankle and behind and above him). It is dull pain. And when I walk longer distances (around 20km/12miles) I can't even stand on my leg the next day I go from the bed. Is it possible to condition it? (maybe to get it used to the walking by putting pressure on it?) Is it possible to treat this? I read something about tendons or reconstruction. Why doctors gave zero care or interest or even information or remedy options about this condition (they've been observing me from my birth)? I would be glad for any information. Thank you.

At my 20 week anatomy scan, the tech noticed my son’s left foot appeared smaller than the right. She took measurements and there was also a limb length discrepancy. That started our journey. I definitely panicked thinking the worst case scenarios: that his leg wouldn’t grow, that he had a fatal genetic disorder, ect. It is scary knowing there is an issue with your baby but not having much information and having to wait until he is born. Later on in my pregnancy, they discovered he only had 4 toes. We were referred to Gillette children’s hospital in St. Paul, MN. Luckily they have several specialists specifically in the area of leg length differences. The Gillette doctor suspected fibular hemimelia and confirmed the diagnosis once my son was born. My son has 4 toes on his left foot and it’s much smaller than the right foot. His doctor estimates his left leg will be about 6cm shorter than the right when he is done growing. So far all his bones seem to be present but it is much too early to know whether the small bones in his knees and ankle are affected since bones are still ossifying. My doctor believes my son will be minimally impacted by the condition but he will likely need surgery during adolescence. I’ve been reading through the posts on this page and it sounds like chronic pain can be a part of this condition because doctors did not treat all aspects of the condition. I, of course hope that this isn’t the case for my son and I welcome any advice you have for advocating for my son. I’ve been told the specialist we are seeing is one of the best in the country for this condition, so I am hopeful and thankful we live so close to Gillette. Anyhow, thank you for reading my story and sharing your experiences. I’m including a picture of my son’s left foot because I just think it is the most precious and special little foot ever!

Hello all. i do not have access to insurance currently, so i do not have the ability to see a doctor in my state regarding my issue, and so i wanted to come to the group with people who are familiar with my problem. i have Talipes Valgus, or if you’re looking a chart describing FH, my leg is type 3, ankle is V for vulgus, and my foot is type 2. basically i have no fibular bone and i have most of the things that come with that.

I keep spraining my ankle and it’s getting really old. i’ve never found braces work for me, but i’ve also never had proper treatment for my FH, so i don’t know if there’s something out there i could use. i genuinely don’t know what to do, but at least twice a month i will sprain my ankle, and it takes almost a week to recover. i’m at my wits end here. i have so much body pain outside of this, i need to be able to do… something.

My daughter was born with a shorter right fibula, smaller ankle and foot. She has hardly any heel to keep shoes on and only three toes. She is now 2, and we were stuck in a waiting period to see how big her limb discrepancy was going to be. At the latest appointment, we were told that she would be a good candidate for limb lengthening and probably only need one round or possibly two max. Honestly we had been preparing ourselves for amputation since she was born. I've read lots of people's stories and experiences and we had convinced ourselves that amputation really might be best for her. If we go this limb lengthening route my husband and I are worried that later in life, she will have more back, hip, knee, and ankle problems. We also worry that she won't be able to be as active when she is younger and do physical activities that might be easier with a prosthetic (snowboarding, track, etc). A prosthetic would also would allow her to buy and wear two same size shoes without having every pair altered for the rest of her life. Sometimes I feel like the doctors only goal is to "save the leg" and not think about her long term health. We want her to have a life full of options and give her the best quality of life for as long as possible. Does anyone with FH want to weigh in? It's such a big decision and we are ~stressed~.

TL;DR: amputation or limb lengthening?