surgery

[Guest guest]

Hi all, Barbara from Bethesda, MD, here.

Alice's (age 8) surgery has been scheduled for May 3 in Wilmington,

Delaware at the Alfred I duPont Hospital for Children. It will be

performed by Dr. Jayakumar, otherwise known as Dr. Jay.

In mid February the duPont gait lab performed a 3 hour gait analysis

on Alice, where she was video-taped by six different cameras from

different angles simultaneously. They also measured her respiratory

functions and had her walk on special mats that were hooked up to

computers that projected her footprints on a monitor. The footprints

looked like color-coded topigraphical maps showing the weight bearing

areas of her soles in gradations. It was very cool, although I have

no idea whether it is valuable or merely hi-tech hype.

Anyway, Dr. Jay wants to release the muscles creating Alice's high

arches (plantar facias) and transfer the posterior tibial tendon to

the forefoot so the it will lift the front of her foot (meaning it

performs the job that the peroneal muscles no longer perform). He

adamantly stated that he would not surgically lengthen the achilles,

because he felt it would weaken it. Rather, he will do a series of

post-operative casts that gradually stretch Alice's achilles tendon.

Initially, he thought he would have to break the first metatarsal

bones to get Alice's feet to lay flat on the ground (she now walks on

the outer edges of her feet). After the gait analysis and x-rays,

however, he no longer thinks he has to do this. He believes that he

can correct with only soft tissue procedures.

As some of you know, I have traveled far and wide (Boston, NJ, DC,

MD)to interview doctors for Alice's surgery. The last surgical

evaluation, done at s Hopkins left me so depressed (which I am

prone to anyway). Among other things, the orthopedist there said

that I had waited too long to move on Alice's surgery -- that she now

had boney deformities. That doctor wanted to lengthen the achilles

tendon, calcaneal osteotomies (heel bone surgery) and a split tendon

transfer using only part of the Posterior tibial tendon. They were

quite frank that boney surgery at this age would cause some permanent

rigidities that cause a new set of problems.

To be honest, I don't know if I am going with duPont because they

told me what I want to hear or because they really do know what's

best. I have educated myself about this disease and its management,

and I felt that the folks at duPont were the most thorough. (By the

way, I did like the people at Boston Children's too, but duPont is

closer to us)They were also the only ones who could pull files on

other patients who have CMT. All I can say is that I have made a

decision. I hope it is the right one.

Finally, if any of you have tips on managing the recuperation period

with a child in two leg casts, I would appreciate hearing from you.

Thanks.

Barbara