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Re: surgery mess up?

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Jerry,

If you dont mind, how did your CMT surgeon mess up? I also had two surgeries on

the same foot less then a year apart cause the first surgery didnt work that

well...just wondering if its a common occurrence with CMTers..

Matt

________________________________

From: Jerry Walfish <walfishj@...>

Sent: Mon, March 14, 2011 1:58:52 PM

Subject: Re: welcome Hanadi and a few words about surgery

My experience indicates that the following rules apply to CMT surgeries.

Please make sure that the doctor you are seeing is knowledgeable in CMT. If the

physician has no REAL knowldege of CMT - try to find someone - NOT a surgeon -

who IS knowledgeable in CMT for a second opinion.

Then discuss EXACTLY what he or she expects to accomplish with the surgery.

Next discuss what the consequences of not doing anything will be.

Sometimes a brace can accomplish the same thing as surgery - sometimes not.

Healing periods for we CMT sufferers tend to be longer than the doctor's

estimates. So be certain you can get support during your recovery peiod.

All that being said, and my [experienced] CMT surgeon still messed up. Royally.

Good luck.

Jerry Walfish

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1. The first surgeon tried to straighten my toes. The rods he put in wouldn't

stay in, and I also got MSRSA and was on intravenous drip for 6 weeks. The toes

are not straight.

2. The second surgeon lengthened my Achilles tendon, but he also messed up the

dressing and I had to go back and have surgery to clean it out. Then the wound

wouldn't heal for 14 weeks. But no I can pronate a bit.

3. Being stationary, I couldn't do exercises so my near diabetes became Type II

diabetes. And I put on 20 pounds.

4. I still wake up in the middle of the night with leg cramps, and while my

walking is better, I have no energy.

5, The third surgeon said no more surgery, all I needed were inserts in my shoes

for $500. That didn't work either and I am now going for a new AFO (the old

ones wore out).

Enough? I got more.

Jerry Walfish

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