Re: welcome Hanadi and a few words about surgery

[Guest guest]

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

[Guest guest]

I don't chime in very often, but I thought I'd throw my 2 cents in.

 

I recently had alot (ALOT) of " soft tissue " work done on my left foot. The

surgeon was Dr. Sigvard Hansen and he's very well educated in CMT. He also did

my right foot approx. 15 yrs ago.

 

The first surgery was a spectacular success. This is why I opted for the second

surgery as soon as I had the insurance needs met. I was a little concerned that

the second surgery didn't involve any sort of steel frame structure as my right

foot did. Long story short the foot seems to be doing fine, short of a slight

mishap concerning a little over-zealousy at the gym. I was out of the " boot " for

about 2 months and now I'm back in for a couple of weeks.

 

The surgery does take you completely off your feet for up to 3 weeks. Then

another 3 of slow, gradual weight. I had my surgery on Sept 29th 2010 and was in

a shoe just after Nov. 30th (then back in the boot last Friday dammit).

 

I tried AFOs and although it did provide alot of stability and I was excited

about it, but it didn't take long for me, personally, to start noticing the

weakness in my legs when I didn't have them on. It seemed like my legs had begun

to " rely " on them and the muscle that was week in the first place got weaker

quicker.

 

Dr. Hansen is retiring, but he has a well trained staff of surgeons that have

studied under him and know alot about CMT. If you'd like more info:

http://uwmedicine.washington.edu/Patient-Care/Our-Services/Medical-Services/Foot\

-and-Ankle/Pages/default.aspx

Or, here is a pretty good article on Dr. Hansen:

http://seattletimes.nwsource.com/html/pacificnw/2008881714_pacificpfootdoc22.htm\

l

 

Good luck with any decisions you make.

 

[Guest guest]

Welcome Hanadi!

I had surgery on my feet and ankles 25 years ago, fusing bones, lengthening

tendons, lowering arches and straightening toes. It seems to have worked well,

but there was a recovery time of about 6 months in casts for each foot.

As others have said, do your research and make sure your doctor has experience

with CMT. If you can, find a doctor who is part of a group or has a team.

Sometimes, the physical and occupational therapists can help with our daily

lives more than then neurologists and orthopedic surgeons.

Good luck and keep us posted.

,

CT, 40s, CMT1 (subtype undetermined)

[Guest guest]

I had ankle and foot fusions as well and I was in cast six month for

each operation. A total of two and a half years and five operations.