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Re: HEEL CORD SURGERY

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, I am also a toe walker...always have been. While I haven't had

this surgery, using inshoe orthotics which are built up under my feet

allow me to walk with a Heel first, then toe step. I haven't heard of

these orthotics used on childrens feet. At any rate, yes, I would

definitely get a 2nd opinion. ~ Gretchen

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hi kelly...I had the heel cord surgery done 13 yrs ago...I;m 48 now...

Its a very painful recovery but I'm glad I had it done..I can wear sneakers

now,before i had to wear shoes with heels..I'm still walking flat footed,I

cant go on my toes now even if i wanted to..I would have it done if i were

u..My balance is better and I dont feel so weird walking barefoot in front

of someone....good luck Heidi

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Its always wise to get more than one opinion on any medical procedure.

When I was about 17, I had a lot of pain and cramping in my right foot

so I had my Achilles tendon lengthened; the operation relieved that

aspect, but I never gained back the strength in my leg and was never

able to run after that.

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,

I haven't posted in quite sometime, but I felt compelled to reply to your

post. I am now 43 years old, but I had my heel cords lengthened several

years ago (plus some other procedures). For me, lengthening the heel cords

helped me tremendously. Surgery was done on one foot at a time. I wore

several casts, and it was inconvenient, but well worth it. I did not find

the surgery to be that painful either. In my opinion, I would seek another

doctor/surgeons opinion since your daughter is so young.

Good luck,

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Walking on tiptoe in CMT type 1 (is it type 1A??) is a compensation to

forefootdrop: in few words it's a way of walking without effort (they just

have to control the triceps surae muscles) and without tripping. Children

generally prefer walking on tiptoe instead of lifting the leg more than

normally (steppage gait).

In time the triceps surae muscles get short because they are not stretched

and later on it is sometimes necessary to lengthen the Achilles tendons by

surgery, which may weaken the muscles. I prescribe daily stretching

exercises for the plantarflexors on the oscillating table and walking with

flat shoes at home (outside the house some heel is necessary). At the age of

8 I do not recommend surgery to lengthen the heel cord, since the triceps

sure is just contractured, not fibrotic, and should be not difficult to

stretch it by such a treatment (2 sessions a day - 30 minutes each - better

if combined with recreative activities, such as painting on a paper on the

wall, if she likes). Supervision by a physiotherapist is generally

recommended.

Best regards to everyone.

Paolo Vinci

----- Original Message -----

From: " Benzo " <kwilson@...>

< >

Sent: Monday, May 12, 2003 9:50 PM

Subject: HEEL CORD SURGERY

> My daughter just turned 8 and was diagnosed with CMT (Type 1)

> over a year ago. She has always been a tiptoe walker. She's

> had orthos and braces to try and stretch the heel cord....physical

> therapy...nothing has made a noticeable improvement. Her doctor

> at Children's Hospital in Pittsburgh, PA is recommending heel

> cord surgery to lengthen the heel cord.

>

> Does anyone have any experience with this? I'd appreciate any

> input or advice anyone has. Additionally, do you think it would

> be wise to obtain a second opinion before surgery?

>

> Thanks to anyone responding.

>

> Benzo

>

>

>

>

> HMSN (CMT) is an inherited, progressive disease of the nerves with

weakness and numbness more

> pronounced in the legs than the arms. Physical therapy, braces, and

orthopedic surgery may help

> manage these symptoms. Most people with HMSN can walk throughout their

life and are self-sufficient.

>

>

>

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In a message dated 5/12/2003 1:36:27 PM Pacific Standard Time,

kwilson@... writes:

> Does anyone have any experience with this? I'd appreciate any

> input or advice anyone has. Additionally, do you think it would

> be wise to obtain a second opinion before surgery?

>

> Thanks to anyone responding.

>

> Benzo

I had my heel cords lengthened at 7. I am now 35. When I was 18 I went to

another orthopedic doctor in Southern California. He told me that the heel

cord surgery that I had actually makes feet weaker. That now they use another

technique. I just wanted to pass this along. I have kids with CMT. I am

following the NT-3 research very closely. I think it maybe the ticket instead

of surgery. Just hold on for more NT-3 info before you do anything. Just my

opinion. I know how hard it is to watch your children suffer.

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In a message dated 5/12/2003 6:29:04 PM Pacific Standard Time,

dw_morris@... writes:

> Its always wise to get more than one opinion on any medical procedure.

> When I was about 17, I had a lot of pain and cramping in my right foot

> so I had my Achilles tendon lengthened; the operation relieved that

> aspect, but I never gained back the strength in my leg and was never

> able to run after that.

This is the samething I had done at 7.

I talked to a nurse that has CMT. She also has 2 children with CMT. She

didn't have her sons heel cords operated on. She said they did stretch down

after a long time. He is now 18.

jenny

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