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

From: Genevieve Seymour

To: neurofibromatosis2@yahoogroups.com

Sent: Saturday, September 10, 2005 8:31 AM

Subject: Re: [Neurofibromatosis] NFI

I had Pseudoarthrosis in my right tibia due to NF1. I am 47 and they did not know enough to brace the leg when signs were evident, so my tibia broke at 14 months. I had two operations; one at 14 months and one at 5 years which was successful. I wore a brace until I was 14 years old and have walked with two good legs and no brace or aid ever since. Good Luck, you can email me for more information if you would like.

 

 

 

http://www.stores.ebay.com/beadallthatyoucanbead

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

From: ampleeko

To: neurofibromatosis2@yahoogroups.com

Sent: Saturday, September 10, 2005 8:15 AM

Subject: [Neurofibromatosis] NFI

My 9 year old son has been diagnosed with NF1/bow tibia since the age
of 4 months. At that time we were told by doctors that there was a 50%
chance that his leg may need to be amputated.He has been wearing a
full leg brace since then.   

A few months ago the doctors said he no longer required to wear a
brace. This is totally unexpected as two of his friends with the same
conditions alreday have their legs amputated.

Does anyone know knows of similar case/s that the leg brace was
removed after a period of time?