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Hi,
My name is Jenny...I am 45 and I have NF. At birth I had pseudoarthrosis in my right leg.
This is the thinning and bowing and possibly breaking (as it was in my case) of the long bone in a leg or arm.....
I am one of the lucky ones....my leg healed after only 2 surgeries..one at 14 months and one a 5yrs.
So I have to say to you get more then 1 opinion....get 20, 50, 100, I still have my leg and
I walk without the aid of anything.... I pray for all of us with NF especially the children and their parents..
It's so scary....but my leg healed so I can't give any other answer other than keep trying to find a doctor
who will operate. My doctor did bone grafts and a compression fixation of my tibia.....he is deceased...
I wore a brace until I was 14 and I have a scar and a slight bow in my leg but I have my leg......
You can email me directly if you would like......
Good luck...my prayers are with all of you.....
----- Original Message -----From: debiSent: Sunday, April 04, 2004 10:05 PMSubject: Re: [Neurofibromatosis] amputationMy Aunt lost both of her legs and my sisters son lost one of his legs.... all due to NF....----- Original Message -----From: babybearhugs27Sent: Saturday, April 03, 2004 10:24 PMSubject: [Neurofibromatosis] amputationHello All,
I am going to get a second opion from another doc Wed. I just want
to know if anyone has had amputation do to NF or knows anyone.
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