Neurofibromatosis

[livingwith]

I first found out I had NF when I was 16
I had a bowed left leg all my life
I started having trouble with it in the late 80s I went to several Doctors they all said nothing was wrong.
In 1990 I got out of bed and let out a scream my husband took me to his doctor he done some test and sent me to another doctor I had a large Neurofibromatosis in my leg it was to late to operate so I spent 2 years in a wheel chair before I let them amputate my leg.
My son also has NF as his daughter and Grand Daugh...Read the full article

[snowbear]

Hi Eva! I too have had a bowed tibia of my left leg..At 3 months old my parents noticed my leg was curved. At 8 months it was placed in a cast to protect it...2 weeks later it broke i na cast..At 12 months old I had a operation to strighten it and mend it,it did not take I had many operatins on my leg. I have pseudoarthosis of the tibia assoicated with NF1. I had to wear a brace all my life on my leg when I was not in a cast for 3 yeas..Each surgery I had took over 3 years to mend and then the leg would break all over agin and it was another bone graph bones were taken out of both hips at different ages bothe did not work. With this condition it never mends as it is a very complex condition. Amputation was suggested several times to my parents but they freaked and put me through many 17 in all bone graphs, pins, rods, fixaters, you name it..they only left my leg very painful and more smaller that the other. and 4 size difference in shoed because I was in a long leg cast for 3-4 years at a time or a long leg brace..My leg also broke with a pin in it.I developed a major and searious bone infection in my late thrities 5 years ago and had to amputate that leg. Odd since amputation was the first choice by Doctors. I have much phantom pain and real pain..Because the more pain a amputee has before amputation the more pain they have after. If my leg was amputated as a child and I did not have all those uselss operations I would be better of today. Iam the only one on my big family with NF1. I come form a large family of 8 with me being the youngest..and the only person with this..It has not come around to anyone else. I have this form as mutated gene..My husband and I decided not to pass it on to our children and stop the cylce of it with me. No child should go through what I have so we decided not to have children. as it is passed on. It is a very complex thing to have. I hope your doing ok with the amputaion and things are going well. Iam having some sstruggles with mine but I keep up the fight..Thanks for sharing your story.

[snowbear]

Hi Eva, I was happy to share my story with you. I have NF1 also. I have many (birth marks) and many very samll misquito bite size lumps on both arms and a few on my neck and tummy, that can only be seen in direct light or sun light..I have been lucky so far as far as the lumps go..all my life it has been my leg. Have you been to the NF support group? its line..Just log into NF index page anf you may find it. I go on once in a while. Its good to find out information and learn and share information about NF I would like to correspond with you it would be nice to share our experiences about amputation and NF..I hope you do not have it in your right leg...Many thoughts are with you..