Neurofibromatosis Support Group

I just celerbrated my 38th bday on the 21st of April. I feel as my life will be shorter than it should be due to NF.

I was 10 yrs old when they told my Mother that I had what was called "Von Recklinghosers Diease". It was not refered to as NF or Neurofibromatosis. It was not until I was 20 and Pregant with my now 16 yr old daughter that I started to have MAJOR MAJOR problems. My first surgery was in March 1992. 10 mellon sized tumors removed off of my C-1 / c -3. and brain steam. I had little out patiant surgerys from 1993 - 1999.

I was not until July of 2007 that I had to have my next major surgery. I went to breakfat with friends that morning and got home took a nap woke up and could not move my legs, I freaked out big time, my roommate was not home, I called my best friend in Georgia (Her hubby and son also have NF) I was crying so hard that she could not understand me, as it is told to me she got me to calm down enough to call my roommate's GF and see if she had heard from him, she had not so he had 3 ppl calling him trying to get him to get to the house ASAP, went to the er of on hospital in which I was told by the intern that the numbness would go away and not to be so babyish about it. My roommate lost his cool and said "do you know anything bout NF" her reply was "No, they never taught us bout it in med school" He then told her that we were not leaving until I was seen by a "REAL DR" So I was taken back and had a CT scan done, the guy who wheeled me to and from the CT scan knew more about NF than the Intern. So, I was seen by a dr and was told they were sending me to Barrows @ St. Joes (The best nerlogical hosopital in Arizona)

Was seen by the dr right away and the rest is just what people told me, my roommate Mark had to steep in as my Dad (my dad was killed in nam 1 month before my 1st bday) So he wrote up a quick will and so forth just to be on the safe side. the 29th - aug 2nd i was basically in a sleep state. If it was not for the love and carring my NF friends from www.ctf.org (childrens tumor foundation) and my Bi Polar suport group friends I dont think i would be alive.

When the dr talked to Mark (My roommate/Dad) he told him I only had a 25% of living, and I think that really scared him.

I know that they removed close to 20 tumors and debulked 1. The surgery took over 17 hrs and there were 8 drs involved. The dr wanted to do the surgery on the 29th but he could not get his whole team in place and did not feel safe bout doing it without his whole team.
While I was in the hospital I started to leak spinal fluid NOT GOOD. It took forever but it stopped
So by the Good Graces and the Fact that My Daddy and Pappa Martin were with me, I made it.

I then went to the care center from HE** and got home and went back to the er because I was leaking spinal fluid again. I went back to ICU and they found out I had MRSA (Superbug) and they had to stop the Spinal Fluid leaking again. I was on IV anti - botics for 6 weeks. NOT fun. But finally got out of the hospital and in to the 2nd care center this one I loved. Got home in Oct and it took me until dec before I could get back to my life. I did not get on the computer for months at a time and I am addited to thecomputer

So this is my Long Story with NF.

Bitty
Posted on 05/01/08, 02:05 am