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trainer1
 Post subject: hi im new too
PostPosted: Mon Sep 14, 2009 7:37 pm 
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CMTer

Joined: Sun Sep 13, 2009 10:04 pm
Posts: 1
Hello all......I'm new too. I am 51yrs. old and was diagnosed at 32. I've been in denial up until 2 yrs ago. I have seen three ortho surgeons and all agree I should have surgery. You know tendon lengthening, tendon transfers and a few other things. It's on my mind constantly. I've tried AFO's and I get pressure sores and knee pain because they put me soooo out of alignment. I'm scared. I'm as active as I can be, which is probably more active then the average healthy person. How do I know when I'm ready for the surgery?


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annie
 Post subject: Re: hi im new
PostPosted: Mon Sep 14, 2009 8:23 pm 
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The Dizzy Blonde
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Joined: Sun Jul 19, 2009 4:26 pm
Posts: 571
Location: Burnley, Lancs
Name: Ann Sutcliffe
I do not have CMT: I do not have CMT. My husband and my son both have HNPP
hi trainer :wave:


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leeds36
 Post subject: Re: hi im new
PostPosted: Mon Sep 14, 2009 9:12 pm 
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CMTer

Joined: Sat Sep 12, 2009 9:48 pm
Posts: 115
Location: leeds
Name: paul w
CMT Type: 4 i think
hi trainer


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SAM
 Post subject: Re: hi im new too
PostPosted: Mon Sep 14, 2009 9:40 pm 
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Site Admin
Site Admin
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Joined: Mon Nov 03, 2008 2:39 am
Posts: 5117
Location: Settle, N Yorks
Highscores: 7
Name: Sam
CMT Type: CMT Type 1 (sub type as yet unknown)
Hi Trainer,

Welcome to the forum :hello:

When to go for surgery is a very personal choice, noones answer is the right one ;)

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Anna77
 Post subject: Re: hi im new too
PostPosted: Mon Sep 14, 2009 9:40 pm 
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CMTer
User avatar

Joined: Mon May 11, 2009 9:44 pm
Posts: 754
Location: dorset
I do not have CMT: but my partner (s.j.lewis) has CMT type1a and so does my eldest daughter
hi trainer. welcome :bighug:
i guess it's a personal decision to have surgery and whether you are ready or not. do you feel like you will benefit from having surgery ? or are you happily active without needing anything?

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To get back my youth I would do anything in the world, except take exercise, get up early, or be respectable.

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Sally
 Post subject: Re: hi im new too
PostPosted: Tue Sep 15, 2009 7:23 am 
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Super Granny

Joined: Thu Nov 27, 2008 8:38 am
Posts: 1229
Location: Lancashire
CMT Type: HNPP
Hi Trainer :wave: Welcome to our happy home on here. Loads of people to offer you help and support.

_________________
We can't change life, so laugh at it.

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Jackie B
 Post subject: Re: hi im new too
PostPosted: Tue Sep 15, 2009 7:49 am 
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Support Team
Support Team
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Joined: Tue Nov 11, 2008 6:21 am
Posts: 1659
Location: Rustington.
Name: Jackie
CMT Type: cmt type 1a
Hi Trainer :wave: .

Talk to your consultant tell him/her your fears and ask loads of questions.

Write your questions down so you wont forget. They wont mind.


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iain2342
 Post subject: Re: hi im new too
PostPosted: Wed Sep 16, 2009 2:55 pm 
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CMTer
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Joined: Tue Jun 30, 2009 6:39 pm
Posts: 16
Location: south coast hants/Dorset
Name: iain
CMT Type: Not sure
hi iv just had a triple fusion and soft tissue release andarthrodesis 7 wks ago in hospital for 4 days just had plaster removed today

had ski type plaster put on today foot still very swollen
just been told it will take 6 months to heal another 3 months non walking


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Rhyafire
 Post subject: Re: hi im new too
PostPosted: Mon Sep 21, 2009 12:22 pm 
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CMTer
User avatar

Joined: Wed Jun 24, 2009 7:58 pm
Posts: 197
Location: Canterbury
I do not have CMT: I have the opposite HNPP PM22 Deletion
Hi Trainer :wave: Hope you are well just now!
Goodness Iain that sounds painful. How are you coping getting around? I send you a :bighug: Hope you're out and about soon with minimal pain :kiss:

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Everyone has a gift, some just take a little longer to unwrap theirs... x

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