Have you had a CMT related surgery?

Please share your experiences with us.

Thank you for bringing up a new topic and opportunity to bring out the fact, CMT causes many secondary issues. I have what was thought to be a "lazy eye" since age 13. I had droopy eyelid that was interfering with eyesight. By the time I'd been diagnosed with CMT, I had 50% loss of eye sight in my left eye and going blind fast. I had a 4 yr old, a 2 yr old and my baby (infant) granddaughter to care for so decided to have surgery to correct the droop. It gave me function long enough for the children to be older and have time to teach them how to do things for themselves before my CMT progressed to a point of me having to help to care for them.

It improved for a few years but they told me it would need to be done again and again as progression allowed the eyelid muscle to atrophy and eventually my eyelid would have enough tissue removed (to lift the muscle that controls it) that it would be so it would not close and would have to have drops in it all the time b/c of the drying out. I'd been told that feet surgery's, tendon surgery's would have to be repeated as well and CMT keeps us from healing sometimes slowly but sometimes more damage that doesn't repair. So, have had no other surgery's, have used braces (AFO) and hand splints but no surgery b/c it is a risk for me as I do not heal from anything well.

If you consider surgery think of the long range ,not short range and think of the down time to recovery can cause more function loss b/c inactivity can cause more weakness that you do not recover; CMT doesn't allow us to regenerate therefore progresses never a remission always a progression of wasting and loss. PACE is the way to cope best with CMT. Change activity and movements do not do same things repetitively or you are breaking down and losing ground.

P=Practice A= Activity C= Considering E= Energy Share and Be Aware! Advocate Awareness b/c so many times the little you share may make another be aware of what might be the cause of their symptoms.

About ten years ago, I had surgery to correct my left foot which continued to supinate. I had difficulty walking and my stability was getting worse. They cut the plantar fascia to lower my arch. Took some bone from the top of my foot and inserted it on the outside of my foot under my ankle bone. They also took tendons and ligaments on the top of the ankle/foot area on the right side to the left side to help "pull" my foot closer to the centered position. This worked well for several years. I was able to wear flat soled shoes but as the years progressed my foot would roll in any soft soled shoe, no matter how flat the sole was.

About 5 months ago, I discovered that New Balance has a shoe called the "rollbar". It has a "rollbar" in the heel that goes from left to right in the middle of the heel and it has a firm piece that goes down the length of the shoe from the front of the heel to near the toe. This has given me a great amount of stability and allows me to mow the grass again. I was unable to even walk on anything but a smooth, solid surface because of the supination. They have several models that have this "roolbar" technology in them and they may be benificial. They are expensive but comfort and stability is something I am willing to pay for.

I have found the best prices for these shoes to be at http://www.onlineshoes.com/new-balance-rollbar,product-search. I purchased two pair and have been thrilled with them.

If you want to try a pair prior to purchasing, I recommend going to the "Good Feet" Store, but I would purchase them online as they usually have a 20% discount and free shipping back to them if needed.

Hi VietVet;

Glad you shared. I'm always looking for aides to help me be safer and more able! I've stopped wearing my AFO's for the most part as my atrophy in lower legs makes the plastic rub(even with padding and socks) and irritate and keep the skin raw especially summer humidity. I now have a boot I wear when needing to walk any distance or longer than a few minutes at a time; It supports my ankles and is the boot that the police officers wear. I ride a motorcycle with my hubby and it saved my feet in a recent accident. I'm thankful I've been able to stay on my feet and legs , despite being told 18 years ago, I'd be in a wheelchair permanently. I cannot walk distance and do use a chair or scooter when those times arise or on uneven ground such as watching grand children play soccer etc. outside. I do not allow myself to walk to long without resting or I trip and fall due to foot drop. I believe my feet were affected as a very young child as I had extreme arches and walked on my toes until age 10 or so 90% of the time; I was not forced to wear shoes b/c they hurt my feet so I didn't develop claw or hammer toes but i do have shortened stubby toes which affects balance greatly.

By sharing our changes and how we cope we can help each other maintain ability rather than giving up things we enjoy we kind find ways to continue at our own level and pace!