Re: Surgery Discussion

[Guest guest]

Andy,

I had ONE tendon surgery, on BOTH feet, during the summer of 1962, shortly after

I was diagnosed. I was 10 years old. I had plaster casts on BOTH legs for 6-8

weeks. When the casts came off, my feet had been 'rearranged'; I walked evenly,

and to this day that is the ONLY CMT surgery I have needed. No 'screws' were put

in me, as this was strictly a soft tissue operation.

Did it work? Yes. Has it ever been suggested to re-do it or do more?

No. Not needed. I also didn't miss any school since it was in summer.

It wasn't so much the surgery, I think, but the PT after, walking in

dry/wet sand barefoot to strengthen muscles, which I still do. The PT

also included swimming with specific foot exercises, which I still do.

My surgeon was Marshall Urist, MD of Los Angeles. He has passed away,

but was extremely knowledgeable, kind and caring. The " right " surgeon

makes the difference, or at least he did for me.

~ Gretchen

[Guest guest]

Gretchen,

As always thanks for the info. When I was younger it was recommended I get that

surgery but my parents got a 2nd opnion and the 2nd doctor said no as did the

3rd so I never got it done. I am maybe thinking of other surgeries other

members wrote about on here. Multiple surgeries to me seems like a lot of

headache but

everyone is different and if it works you can't argue with that. I would

certainly get one if the majority thinks it impacts long term ones health. My

foot has no deformities but from my ankle to my calf is very atrophied and I do

not think there is a surgery for that at least none recommended.

I wish I lived by you because it seems you had many positive experiences with

doctors. I can honestly say I had none and I live in NJ where there are " good "

hospitals since I am close to NY and Philadelphia and have gone to facilities

recommended on the CMTA site.

All in so many words have said it is what it is and not much that can be done

but of course you have shown differently. I am only 32 and still walk but it's a

struggle at times. I just started using a cane for long distances. Despite the

crappy advice I got I will still do mild exercises and look into the Helios in

the future when I have the money it seems like many on here have said great

things and I now know to stay away from Marmaduke. I do know they are not

trained professionals in the area of CMT but the many that were and licensed

orthotics have very little knowledge about how to make braces either in my

opinion and I have seen many.

I have controlled the pain with Neurontin and Ultracet without them I would be

in agony. I did my own research on the meds first and my doctor (primary)

agreed and put me on them. Some times you have to

play doctor unfortunately.

Many say there is no pain with CMT and I wonder if I would have a secondary

diagnosis of fibromyalgia which I see many people with chronic pain and fatigue.

I seem to have most of the symptoms of what I read about it but I am sure CMT

has similarities. Thanks again and sorry I seem so negative at times. I am

mostly

positive and this group has helped me much.

Andy