Samantha

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.
2013-07-05-060052-507001
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!

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