Re: Foot Reconstruction

[Guest guest]

I am new to the CMT diagnosis for my daughters.  Can someone explain to me why

someone would need foot reconstruction surgery?

Mother to Ashlee Rayne & Aimee Renae

________________________________

From: Diane Gracely <diane@...>

Sent: Thu, December 2, 2010 1:10:44 PM

Subject: Foot Reconstruction

 

I have a question for all of you in the group.

I had both feet reconstructed 13 years ago and I am curious

as to why more CMT patients do not have this done?

I think if I had not had it done I would be in a wheelchair

by now. I am 46 years old now. I was diagnosed with CMT when

I was 15 years old. BUT I had been coping with it from

very early childhood.

I am very thankful to be able to walk without braces and to

not be in a wheelchair. Of course I still cannot walk or stand

for long periods of time, but it sure is nice to have somewhat

" normal feet " .

I could go on and on here but I won't... I will save it all for my next book I

am writing.

Thanks for allowing me to be a part of this CMT Group!

You all are a great bunch of people!

Diane Gracely

www.dianegracely.com

[Guest guest]

Hi Diane and ,

I had an early tendon surgery in both feet shortly after I was diagnosed in

1962. That has lasted all these years. Not quite total reconstruction, but soft

tissue/tendons. (both feet at the same time)

, in people with CMT, there are many types of foot surgery to correct

overpronation, underpronation, arch lowering, hammertoe straightening,

correction of gait to heel/toe from toe/heel for toe walkers, etc. Sometimes an

ankle fusion, the list goes on.

The surgery I had gave me a straight heel/toe gait. 48 years later I'm still on

my feet, just added in-shoe orthotics to absorb foot shock and provide for extra

balance.

However, know that any type of foot surgery * does not take away CMT *, but it

can definitely improve quality of life!

Gretchen

[Guest guest]

I had the triple fasciotomy (sp) and that took care of about everything

Gretchen had on her list for surgeries.

In a message dated 12/2/2010 11:48:28 A.M. Pacific Standard Time,

gfijig@... writes:

, in people with CMT, there are many types of foot surgery to

correct overpronation, underpronation, arch lowering, hammertoe straightening,

correction of gait to heel/toe from toe/heel for toe walkers, etc. Sometimes

an ankle fusion, the list goes on.

[Guest guest]

Hi ,

Just a few personal reasons why my middle son has not had surgery. Dr.

Bernstein explained to me that heel alignment is something that doctors

watch in CMTmt. With my son surgery has not been recommended because his heels

are in the proper position. I believe the AFOs have kept him from moving

positions. As far as tendon transfer goes my son is lacking any good tendons to

transfer so he won't get that done. He wear AFOs unless he is asleep so he won't

need his ankles fused right now.

Reasons why my older son had a triple. His ankles were turning inward, he had

good tendons, his arches were very high. His bones were getting soft and his

heels were out of alignment. To keep him on his feet and walking surgery was a

must.

In a message dated 12/2/2010 11:47:31 A.M. Pacific Standard Time,

lorena_g_martin@... writes:

Cansomeone explain to me why someone would need foot reconstruction

surgery?

[Guest guest]

Hi Diane,

You were lucky that you were a candidate for surgery. Not everyone is.

In a message dated 12/2/2010 11:16:33 A.M. Pacific Standard Time,

diane@... writes:

I had both feet reconstructed 13 years ago and I am curious

as to why more CMT patients do not have this done?

[Guest guest]

,

Something to remember is how random the effects of CMT are between people. even

between effected family members. I was the clumsiest kid you ever could have

imagined, she was athletic beyond most. I was around 20 when I was diagnosed, my

sister was well into her 40's. I am 48 now and she 59, and she is nearing the

need for a wheelchair, but I walk around a major manufacturing plant hours each

day with just my Blue Rocker braces. I do not think I would benefit from any

reconstruction, yet we were told my son was not a candidate due to lack of

viable tendons.

All I am trying to say, is pay attention to all the discussions, but as you

travel this journey, when one something comes up with one of your daughters, you

will have heard of it and have a little knowledge to help you. Plus, you have

all of us to bounce things off when you need to!

Mark

>

> I am new to the CMT diagnosis for my daughters.  Can someone explain to me why

someone would need foot reconstruction surgery?

>

>

> Mother to Ashlee Rayne & Aimee Renae

>

>

>

>

>

>

>

> ________________________________

> From: Diane Gracely <diane@...>

>

> Sent: Thu, December 2, 2010 1:10:44 PM

> Subject: Foot Reconstruction

>

>  

> I have a question for all of you in the group.

>

> I had both feet reconstructed 13 years ago and I am curious

> as to why more CMT patients do not have this done?

>

> I think if I had not had it done I would be in a wheelchair

> by now. I am 46 years old now. I was diagnosed with CMT when

> I was 15 years old. BUT I had been coping with it from

> very early childhood.

>

> I am very thankful to be able to walk without braces and to

> not be in a wheelchair. Of course I still cannot walk or stand

> for long periods of time, but it sure is nice to have somewhat

> " normal feet " .

>

> I could go on and on here but I won't... I will save it all for my next book I

> am writing.

>

> Thanks for allowing me to be a part of this CMT Group!

> You all are a great bunch of people!

>

> Diane Gracely

> www.dianegracely.com

>

>

>

>

>

>

>

>

[Guest guest]

I was always told to delay surgery as long as possible, and that using an AFO

would make me weaker faster. I did neither until I was 59 and my left ankle was

turning so badly I could barely walk. Even an Arizona AFO didn't help.

My surgeon said do the triple or I would eventually break the ankle and then

might lose the foot. He also said I should have been to see him 5 years earlier

and we may have been able to do a tendon transfer and possible delay a fusion

until I was .... well, dead hopefully. :-)

PS: he also said if I started AFO's a bit sooner it may have limited the

deformity.

Everyone is different. I suggest CMT'ers be seen annually by a good OS who has a

foot ankle specialty and get several opinions from others before proceeding to

surgery.

I know some people want surgery for mostly cosmetic reasons. Given the extent of

the surgery, the long recovery and the risk of complications my opinion is

that's just crazy. If it's pain or keeping you able to walk longer, that's a

whole different story.

>

> I am new to the CMT diagnosis for my daughters.  Can someone explain to me why

someone would need foot reconstruction surgery?

>

>

> Mother to Ashlee Rayne & Aimee Renae

>

>

>

>

>

>

>

> ________________________________

> From: Diane Gracely <diane@...>

>

> Sent: Thu, December 2, 2010 1:10:44 PM

> Subject: Foot Reconstruction

>

>  

> I have a question for all of you in the group.

>

> I had both feet reconstructed 13 years ago and I am curious

> as to why more CMT patients do not have this done?

>

> I think if I had not had it done I would be in a wheelchair

> by now. I am 46 years old now. I was diagnosed with CMT when

> I was 15 years old. BUT I had been coping with it from

> very early childhood.

>

> I am very thankful to be able to walk without braces and to

> not be in a wheelchair. Of course I still cannot walk or stand

> for long periods of time, but it sure is nice to have somewhat

> " normal feet " .

>

> I could go on and on here but I won't... I will save it all for my next book I

> am writing.

>

> Thanks for allowing me to be a part of this CMT Group!

> You all are a great bunch of people!

>

> Diane Gracely

> www.dianegracely.com

>

>

>

>

>

>

>

>

[Guest guest]

Surgery was the best thing I could have done. I had severe PAIN everyday of my

life in my ankles. And after 3 years of surgeries and healing time and learning

to walk all over again, I am pretty much PAIN FREE. It was a BIG relief for me.

It helped my balance, and eliminated the severe pain in my ankles. Coping with

that pain was horrible. I would definitely do it again!

Diane Gracely

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[Guest guest]

I had both of my feet reconstructed at different times. The good part was

getting rid of the foot drop syndrome. The bad part was the doctor did not

reconstruct each foot the same as the other. My right foot is great. My left

foot...not so much. And I should not have waited until later in life. I should

have had it done in my 30's or 40's.

Carole Beaver

[Guest guest]

We Only 2 feet! Can I ask what surgueries?

>

> Surgery was the best thing I could have done. I had severe PAIN everyday of my

life in my ankles. And after 3 years of surgeries and healing time and learning

to walk all over again, I am pretty much PAIN FREE. It was a BIG relief for me.

It helped my balance, and eliminated the severe pain in my ankles. Coping with

that pain was horrible. I would definitely do it again!

>

> Diane Gracely

>

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[Guest guest]

I had to have both feet don If I had not 19 will c243

> >

> > Surgery was the best thing I could have done. I had severe PAIN everyday of

my life in my ankles. And after 3 years of surgeries and healing time and

learning to walk all over again, I am pretty much PAIN FREE. It was a BIG relief

for me. It helped my balance, and eliminated the severe pain in my ankles.

Coping with that pain was horrible. I would definitely do it again!

> >

> > Diane Gracely

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