Home Page

up dated 24/06/2005 This is my story I am John, from Glasgow, Scotland. The first symptoms of Neurofibromatosis appeared when I was only two. My parents found a lump on the outside of my right ankle. My doctor referred me to an orthopedic surgeon. After several years of treatment he told my parents that the best solution was amputation, my parents where against this. One day when my mother came to pick me up from school she saw me struggling to protect my leg from older boys playing football (soccer), due to the fact the slightest bump would leave me in agony . After seeing this, my parents decided that amputation might after all be the best option. When we went back to the surgeon he said he would put us on to another surgeon at a different hospital to see if he could do anything for me. I had three operations at this hospital. The third surgery was to remove the tumor and it was this surgeon who diagnosed Neurofibromatosis, by which time I was 7 years old. He was against amputation on young children under the age o f 12 years because it would have meant that I would have to have kept going back for operations every few years to have bone growth cut as I was growing. The operations on my ankle left my ankle very badly disfigured and discolored. I had a scar from the thigh down to my ankle. At school I was unable to take part in any contact sports like soccer. My teachers took pity in me and gave me extra swimming classes. I continued to go back to the hospital for 6 monthly check ups. When I was 18 another tumor appeared behind my knee on the same leg. Two biopsies were taking to determine if the tumor was malignant. Deep down I knew that I was going to lose my leg and with the problems I had with it for most of my life it was my preferred option. When the dressing was removed to take out my stitches I was shocked at the state of my wound. Blood and yellow liquid, which I assumed was the tumor, was oozing from the wound. When I saw that I then knew that is was not going to be saved and nor did I want it to be. A second biopsy was taken. It was a couple of long and anxious before weeks before I was finally given the result, that I already knew, it my leg was going to be amputated. At first they did not know just how much would be taken off but in the end they thought it better to amputate from the hip. I had my leg amputated on November 8, 1978 It was over 24 years before my next surgery. I was having problems emptying my bowels. After a rather unpleasant examination of my back passage my doctor suspected neurofroma. A MRI scan confirmed this and also showed the lump was on my right buttock. (amputee side). I had a biopsy which showed the tumor to be low grade malignancy. I had to have a long operation. I Had this operation on the 24 January 2003. I had 2 surgeons one orthopedic to removed the lump from my side and another to remove it from my bowel. There was a lot of nerve damage and I have lost some feeling on my right side and have a little difficulty in empting my bowels. I will continue to have regular CT Scans for the next few years. I had educational problems. I found it difficulty in concentrating and to follow instructions. Even now my concentration is still quite poor. It wasn't until I began to read about the effects of NF that my educations problems maybe down it. No one else anywhere in my family has Neurofibromatosis
LINKS

National Neurofibromatosis Foundation Inc	Neurofibromatosis United kingdom	Clinical Trials Images	NF Chat	Question And Answers