Re: DIAGNOSIS AT YOUNG AGE

January 17, 2002

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I have tight heel cords as well - no surgery though. I basically just live with

them. I was never able to bend my knees and then lift something (the recommended

approach). Is she bothered by the heel cords?? Maybe check around or I would

talk to the folks in Detroit where the CMT Database is to see what they say. At

her age I would get lots of opinions!

martha

Benzo <kwilson@...> wrote: Hi all. My girl is 6

and has CMT. Can anyone help me out with this one? Do you think that since she

had such an early onset that her case will progress to the worst possible level?

The doctors at Children's Hospital in Pittsburgh, PA have said that this is the

worst she may ever get. I understand it is an unknown, but does anyone have

advice/experience?

She is currently undergoing physical therapy to try to lengthen her heel cord.

If it doesn't do much good, she is going to have surgery to lengthen both heel

cords. Has anyone ever had surgery to lengthen the heel cord?

Thanks for any input.

Benzo

Wintersville, OH

January 17, 2002

Yes, she's very bothered by them. She has never been able to walk on her flat

feet..they kept telling me she'd grow out of if (before CMT diagnosis). It is

painful for her to try and walk flat. The tip toeing has caused my trips and

falls and a couple trips to ER for stitches. The pediatric ortho feels it is a

must to have the heel cord surgery if there is no progress with therapy to

stretch heel cords. The PT said to me that after 6 years of walking this way

that it would take months of therapy to stretch the cord to where it needs to

be. I trust the doctor's at children's in pittsburgh. It's the doctors here in

Steubenville, OH I would never trust. My pediatrician said tip toeing was

something she'd grow out of. I knew there was something wrong all along.

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