feedback from a surgery survivor

July 12, 2002

Hi Mamie,

I was going to share my experience. Sorry for the delay. Only problem is

my foot surgery did not involve bones. I remember you said how you had

started to go day hiking and your AFOs were hot. I understand they are

hot from listening to everyone I know with AFOs, but I just wonder if an

adjustment to them could be made or something added under your toe area?

I am just thinking out loud here.

Reason being, surgery is a bummer and a permanent change in your body.

Feet are one of the two most sensitive areas of our bodies. So, getting

through and over the surgery takes time, my last surgery (not CMT

related, I had 5 opinions! - 2 neurologists, 1 neurosurgeon and 2

orthopedists) and I finally got the right Dr! (one of the orthos with 20

years experience!) So am wondering how many opinions you have had on

this. It just seems so drastic, when maybe something non-surgical could

be added to AFO or even your shoe to keep you on the trails.

My experience with a podiatrist was horrible and I ended up going to an

ortho to get his mess fixed (following a car accident and foot injury)

I would encourage you to find an ortho who specializes in either

feet/legs or sports medicine. That's what I did.

I have hammertoes now, but my feet have always hurt. I use ice and take

very good care of them. I understand when I feel pain to STOP and rest,

however long it takes.

You also said you had never been in a hospital before. It can be scary

and intimidating with little or no regard for your privacy. This is my

experience. I take a few favorite things, yes, a down blanket (Cold in

hospitals!) my pillow, cozy pj's, and more. I have been in the hospital

many times, from foot surgery to neurological testing and observation

and on and on.

I always ask what recovery time will be (number of months) if the Dr.

says 3 I plan on 6, as I heal slow.

Have you met with the anesthesiologist or given blood yet or had the

pre-op physical? And yes, you are right, you can back out anytime and

get more information. But a fusion is permanent. Have you asked what

your gait will be like after the fusion and how much physical therapy

you'll require? IF you DO have surgery, can you schedule it for

wintertime, and not miss any good hiking weather?

Hope this helps a bit.

~ Gretchen

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