My journey started when I was diagnosed with CMT (Charcot Marie Tooth) in the 6th grade. My parents took me to a clinic in Michigan to do tests and see what type I had, Type 1A if anyone is interested. It’s a genetic disease so both my parents were tested and neither of them have it. The clinic put electrodes around my fingers and needles in my calves and shocked me until I flinched. They had me do puzzles to test my agility. I was then fitted with hard plastic leg braces which cut the back of my ankles and made me bleed. After a few months I was fitted for hard plastic shoe inserts. Life went on.

I joined color guard my sophomore year in high school. During a summer practice in my junior year, my hips locked up and I couldn’t move. Practice stopped and my dad came and loaded me into the car like I was a 2×4 piece of wood. We went to the hospital, they took x-rays, they sent me to Riley Children’s Hospital.

The doctor at Riley was surprise that I’d been walking let alone doing color guard. He tooks x-rays, gave me limitations and scheduled surgery for my right leg (January 2007).

The first two surgeries were to screw cadaver bone on top of the dislocated joint.
Surgery came with a month in a lay-down wheelchair (not able to bend at the waist or use the toilet), a month in a regular wheelchair (at school) and using left leg to get around with walker (at home), a month assisted walking with crutches and then physical therapy. January 2008, did all of that with the opposite leg.

Third and forth surgeries were done on the right leg to get out bone fragments. Then I went in and had the arthritis scraped away. Had a couple cordozone injections, didn’t last long.

Now I’m 26 and have been to quite a few specialists to have a hip replacement and none of them are brave enough to do the surgery. They say I’m ‘too risky’.

Don’t even get me started on shoes! You can see daylight thru the arches of my feet (from CMT) which makes buying shoes difficult and then adding my inverted hips… goodness! All of my shoes get ruined within 6months from wear-and-tear.

So that’s my situation.
I’m wanting a doctor to man up and do the hip replacements or someone to find me a shoe I can’t wear comfortably! Is that too much to ask??!!

I don’t even get a break from the pain when I’m sleeping! Constantly waking up to resituate.

I just want one pain-free moment.

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  1. Becky says:

    Hi Samantha.
    I also have CMT and was diagnosed as a young child. I have always suffered with pain in my lower limbs and it has always been blamed on CMT. However, at the age of 20 I was finally diagnosed with hip dysplasia. After seeing numerous doctors and a consultant I am having surgery. I am have a triple pelvic osteotomy to realign my hip socket. The will not give me a hip replacement as I am too young and risky, this is because a hip replacement will not last forever so realignment surgery is preferred.
    I am currently awaiting the surgery, and I cannot wait to be pain free.
    As for the issue with footwear, I also have that problem. However you may be able to get specialist designed shoes made by the hospital to provide support.
    I hope this helps, and hopefully you can get surgery sorted soon!

  2. Sammi says:

    Becky, which state and who’s he doctor doing this surgery? All the specialists I’ve seen turn me away! I want your doctor! I wanna be pain free!

  3. Becky says:

    Hi sammi, sorry for the late reply I was undergoing my surgery. I am in the UK and I had my surgery done in the royal orthopedic hospital, Birmingham. Where are you from my advise would be to contact a orthopaedic specialist for your hip if you can find one or ask your gp to give you a referral. I also see a specialist for my cmt, do you? If so, how have you got on with them and have they offered anything to you?

  4. Elena says:

    I too have CMT and hip dysplasia. I had a total hip replacement 2 month ago and it is life changing. My doctor wasn’t afraid of doing surgery. I have no more hip pain. Dr Daniel Oakes at USC if you’re interested.

  5. Sammi says:

    Hey Becky,
    How was recovery!? Pain free!!?? I surely hope so! Let me know :) I would like to hear all about it!

  6. Becky says:

    Hi sammi.
    Have you found a doctor yet?
    My recovery hasn’t been painful at all (to my surprise!)
    I experienced slight discomfort whilst in hospital but it was controlled with strong medication. However, a week after surgery when I left hospital I did not feel any pain and I was no longer taking any medication. Every so often I would feel very slight discomfort but nothing like the pain is was experiencing before surgery.
    I have to do physio everyday to build the muscles back up and everyday I am getting stronger and more confident when walking.
    And I don’t have a good pain threshold at all so I was very pleasantly surprised by it all haha!
    How are you getting on with things? I hope you can get the surgery you need! Let me know :)

  7. Sammi says:

    Hey ladies! I found a doctor who isn’t afraid to perform my hip replacement! But I have some concerns now… He told me I wouldn’t be able to exercise or bend after surgery. Does that mean I’d be living life walking on egg shells? Would I be able to ride a bike? Is having pain better than not being able to do what I want? I just don’t know. He said another osteotomy isn’t an option for me since my bones are so worn out from the first ones. He’s be doing a replacement reinforced with a bone graft. I just don’t know now. Any advice or stories from your recoveries??

  8. Becky says:

    Hi sammi.
    So happy for you that you have found a surgeon!
    You must be in a hard situation whether or not you want to go a head with the surgery.
    My advice would be to try and whey up the pros and cons of the surgery and to get in contact with your doctor to find out as much information as possible, I asked my surgeon a ton of questions as there were many risks and uncertainty with my surgery.
    From my own personal experience being pain free for the first time I can remember is the greatest feeling in the world. Please let us know if and when you have decided about the surgery and I wish you all the best :)

  9. Ashley says:

    Hi Samantha-
    My daughter is 15 and was diagnosed last year with CMT 1a…so was I. She’s scheduled to have PAO surgery in Germantown TN this spring. She’s been seeing Dr. Guyton at the Campbell Clinic. I’ve been told that he’s the BEST, and so far, we agree. She also sees Dr. Warner for her feet.

    Best of Luck!

  10. Paula says:

    Dear Samantha,
    My son, 41, has CMT1A (like his brother and sisters) and is the only one with just about all the CMT difficulties! But he has done everything he wanted to (studied art in Rome – we live in Switzerland – lived a year in Egypt for his studies, now lives in Paris where he is doing a doctorate and is a visual artist). He has just had a PAO (hip replacement)in Zurich. Is still convalesing, gets around on just one crutch now. I had searched on the web before discovering that this operation was done in Switzerland, I found that it was done in California. ON the web there is also the CMT association with lots of information.
    All the very best wishes to you! Hugs.
    All the best wishes to you!

  11. lisa says:


    I’m a 60 year old woman who was diagnosed with CMT 6 years ago. I had a left Hip replacement at age 40. Now I will need a right hip replacement. I have been using a surgeon in Royal Oak Michigan and I am very happy with him.

  12. Bridget says:

    Hello Samantha,
    My family has a strong presence of CMT 1A. I have three sisters and all four of us have the disease, as do two-thirds of our collective children. We also have Ehlers Danlos syndrome, which is a collagen disorder that causes joint hypermobility. Two of my sisters have had total hip replacements in their 30’s and 40’s and it helped them to regain substantially better quality of life. With the first replacement at 30 something, the doctor warned the materials would wear out after 10 years. Twenty years later, she still has no issues with that joint. A few years later, the same sister replaced the other side with ceramic components in an anterior approach. The recovery was faster, much less painful and thus far, great.

    You may have other complications because of your earlier surgeries, but I highly recommend seeking additional opinions. There are a few CMT Center’s of Excellence in the U.S., and a few comprehensive care MDA clinics, which my family has found to be spectacular. You see a neurologist, PT, ortho, and social worker all in the same day and they work with you to address each difficulty within a systems approach. Please check out the Charcot Marie Tooth Association. They have regional chapters that can be a great source of information and general support.
    There are also some good dynamic bracing options that can help your gait and possibly reduce the wear on your shoes and you hips.

    As for shoes, custom inserts are a must. Unfortunately, I have yet to find a company that makes a good-looking shoe wide enough and stable enough. New balance finally makes a 4E with a rollbar that looks more like a runner than their other walking shoes and Aravon (made by NB) also has a few walking shoes that look decent with dress slacks or skirts. Good luck to you. I hope you find some support in your community and a specialist who will listen to you and work with you. In my case, almost every GP and surgeon I’ve ever encountered know less about CMT, it’s effects and mediation than I do. Don’t give up until you find someone who will listen to your concerns, and ALWAYS do your research before your visit to know the MD’s history, the options available to you, and expected outcomes (recovery time, secondary effects, etc.). Extended non-weight bearing may cause more damage than a surgery can repair.

    Finally, ask for transcripts of surgeon’s notes, cds of x-rays, MRIs, or any other documentation related to your treatment and medical history. Other than you, no one keeps a comprehensive records of your care. Become your own best advocate.

  13. Elizabeth says:

    I was recently diagnosed and waiting to have initial consult with the Neuro Doc., but hey have just opened up a CMT clinic at Shands Hospital at the University of Florida in Gainesville. I am eager to finally get some help. This disease comes from my fathers side and my sister had it, but I was never thought to have the disease. I’m now 54 with lots of issues. Cant wait to get help.

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