Re: Where do I start? Need advice

[Guest guest]

Deborah,

Start with an orthopedist for an evaluation. A truly honest and

conservative doctor will not 'cut' first. This is how it should be. You

and the doc should talk long, develop a relationship and explore

options. Then if surgery is recommended, get at least one other opinion.

My main question to you is what makes you think you need surgery? What

kind do you think you need? Feet? Legs? Knees? Back? etc. Do you feel you need

that tendon surgery again?

Gretchen

[Guest guest]

I think I would benefit from foot surgery. Maybe ankle fusion as I turn out a

lot on my right foot. I don't think the tendon transfer did a whole lot to

improve my gait. I have not used any orthotics because I don't think I could

get shoes that would be appropriate to accommodate them. I also struggle with

not being different and as I stated do not want to wear sneaker type/or

orthopedic shoes to my office job. I am not ready for braces, either.

Debi

[Guest guest]

Deborah,

This is exactly what you need to consult with an experienced foot

orthopedist about.

There are orthotics that can go in many shoes that aren't 'sneakers' or

'orthopedic'. I know, I have them. Your orthopedist can recommend an orthotist

for you to see also who can recommend shoes for orthotics.

Gretchen

[Guest guest]

Debi,

Find the best 3-4 Foot/Ankle only orthopedic surgeons in your area

....... usually those who have/had a fellowship in foot/ankle work, and

visit a few. Make sure X-Rays are weight bearing. See if they have the

same or different opinions on how to proceed. A referral to an

Orthotist doesn't hurt if your insurance pays all or most of the cost.

You probably know there are several surgeries for CMT depending on

your condition. Some doctors want to go all out and do everything,

some are more conservative. My feeling is not to do any more than

needed to keep you mobile. The more cuts the more risk of

complication. OTOH, you want to do enough that you don't wind up back

in the O/R in two years.

[Guest guest]

Hi Debi.

I feel pretty much like you do.

I had my heels straightened when I was 15 (left foot) & 16 (right

food) and just 7 months ago had approx. 6 procedures done on the

left. The doctor who did my heels told me that I may need a tendon

transfer later in life. I called one doctor and the office never

called me back -- thank God. I then started the search looking for

someone who knew about CMT. I found Dr. (orthopedic surgeon)

who specializes in foot deformities especially associated with CMT -

it was a needle in the haystack searching the Internet.

He gave me a few options (surgery, AFO, ankle supports) but I knew I

wanted the surgery. I waited several months and went back to

schedule the surgery.

I stayed in the hospital over night so they could make sure the pain

was under control when the nerve block wore off. I went home the

next day and spent the next 4 days upstairs in bed. I was supposed to keep my

toes above my nose and it was much easier up there. My

husband was wonderful took care of me and the 3 boys also made my

favorite cookies though I do not know if that was a good thing

considering I was not moving around a whole lot. I was on crutches 6

weeks -- a knee walker was a life saver. I then went into another

cast with a walking shoe for approx. 3 more weeks until my AFO was

made and I could get in to make sure that fit right. I wore that for

a couple of months to make sure the tendon transfer was good and

strong and then I was slowly suppose to wean my self off the AFO when

my orthotics were made. My orthotics fit inside my New Balance shoes

and started wearing those in the house for a few day and the AFO when

I went out....that lasted probably a week and then I was done with

the AFO.

The tendon transfer took the longest to recover from. He was very

protective of it. I even slept in a night splint when I had the

AFO.

So far so good. You do not realize how bad your foot is until you

get it fixed. I use to cut grass with my right side facing down the

hill now I prefer to do it with the left(surgery side) facing down

the hill. The ankle feels more stable then my right which use to be

the good foot. My left foot looks like a new foot...doesn't match

the right anymore. If everything keeps going well with the left I

will probably have the right done in a couple of years. Just making

my ankle more stable was worth it. The doctor described me as a 3

legged table balancing on 2 legs...

I hope this helps.

Vicky