To Have or Not To Have Surgery

[Guest guest]

Hello,

I am brand new to this... I have been told having surgery on my feet

would be the best. First the most affected foot and then the other. I

am looking for any feedback from those of you who have either had the

surgery and to hear your experiences or from those of you have chosen

not to have the surgery and how that has worked for you. If you've had

the surgery, I'm interested in the recovery, the pain, and the

outcome. Any support would be most appreciated.

Thanks!

[Guest guest]

This has everything to do with the biomechanics of your feet, your

gait, etc. I had foot surgery on both feet at the same time as a child

one summer. 6-8 weeks in hard casts, the first 2 weeks or so in bed,

no weight bearing. I had tendon transfers only, to correct " foot

rolling " . It hurt some to walk once the casts were off, but all things

said, once my feet hit the ground the " right " way, the tendon surgery

had worked.

Surgery won't stop CMT. I've been fortunate to have had great physical

therapy after and have always been very active and on my feet. The

surgery did nothing to stop the " burning " , but then it wasn't supposed

to. It was orthopedic.

Having surgery is a decision only you can make, but I hope you will

get at least 3 opinions on exactly the type of surgery the different

doctors recommend, and weigh them all equally. I also hope you will

look into doctors backgrounds and find out their qualifications and

how many CMT feet they have successfully helped. Get the docs to draw

pictures and diagrams for you to help you understand " their "

suggestions. Also ask about the physical therapy needed after your

surgery.

I have not needed any other CMT foot surgeries since that one as a

child, nor do I require AFOs and at age 54, am still on my feet, very

active and a happy, positive individual, with a very busy life.

~ Gretchen

[Guest guest]

Hi Debi,

I had surgery on both feet when I was 8 years old.

They straitened my heals and pinned them to maintain

the shape. This was an excellent decision.

My parents decided to do both feet at once to get it

over with. Both of my feet were in rough shape and

ready for surgery. It was good to go through 1 major

surgery and recovery to get it over with (for me).

This was EXTREMELY beneficial. I fell less,

experienced less pain, and functioned much better. At

that point the doctors were still concerned, they felt

that I needed more surgery, but were worried that it

would stunt my growth. They wanted to see me every 3

months instead of the usual annual/ bi-annual

appointment.

My grandparents prayed quite a bit and my grandfather

bought me an exercise bike.

My health turned around and they stopped talking about

surgery. I didn't even wear braces - I thought that I

was over the CMT.

I wear braces now - the plastic AFOs with hinges. I

put gel inserts inside the AFOs b/c the bottoms of my

feet aren't padded like they used to be. This

treatment is enough at this point.

What I have been told is that the surgery depends on

your feet. I could address the foot drop - the

extremely high arch, hammertoes etc.through surgery

but I would lose some of the flexibility in my feet.

My feet wouldn't obsorb the shock and have the bounce

that they have at this point.

Everyone has a different situation with the CMT. I

love my braces & experienced miraculous improvement

when I did deep water aerobic exercise.

Good Health and good luck,

Chris

[Guest guest]

Thanks so much for your insight. Lots of people on the site seem to have had

surgery when they were much younger. I'm concerned about the recovery for a 40

year old mom and step-mom of five busy school-aged kids. I appreciate your

insight. The benefits seem to be there, it's the timing, pain, and recovery I

have concerns about and want to be fully educated about before making a

decision.

Thanks again!

Deb