Thursday, June 4, 2009


Neurofibromatosis is a neurocutaneous syndrome passed down through the parents' genes, and it affects the brain, spinal cord, nerves, skin, and other systems in the body.
Neurofibromatosis is defined by tumors, called neurofibromas, that grow along nerves in the body, or on or under the skin. As the tumors increase in size, they can press on vital areas of the body, causing problems in the way the body functions.
Neurofibromas often first appear in childhood, especially during puberty. The first noticeable sign is almost always the presence of brown cafĂ© au lait spots. These distinctive spots don't hurt or itch and never progress to anything more serious than spots. They can be found anywhere on the body, though not usually on the face. Tiny ones — freckles — may be seen under the arms or in the groin area.
Many neurofibromas can be removed. Although usually benign (noncancerous), an estimated 3%-5% become cancerous.
Of the two types of neurofibromatosis — NF1 and NF2 — NF1 is more common, occurring in 1 of every 4,000 births and affecting an estimated 100,000 Americans. It is also known as von Recklinghausen disease.
NF2 is characterized by the presence of bilateral acoustic neurofibroma-like tumors and is rarer, seen in 1 in 50,000 births. People with NF2 usually develop benign tumors on the nerves in their ears, causing hearing loss, eventual deafness, and problems with balance.
The severity of both types of neurofibromatosis varies greatly. In families where more than one person has NF, it can present with different physical signs and complications for each person. At diagnosis, it isn't possible to know right away whether a case will be mild or lead to severe complications

I have NF1 with some characteristics of NF2. I have a very large plexiform tumor : the doctors decribed it as thousands of lil grapes on a blood vien all over the place- this tumor is very large and covers basiclly my entire left side of my skull. its painful and I have severe Migranes, many times having to go to ER for relief. Its so hard to contantly hear " theres nothing we can do"...EVEn the world top Neurosurgeon-the one who seperated the famous twins conjoined at he head...not even he could help me. The pain clinic recently turned me away..telling me there was nothing they could do to help. UGHH Ive tried all my life to not feel sorry for myself and to try and be strong..but lately..Im just feeling beat down.


Anonymous said...

Hi there,
I found you through "B" at I too have NF1 and deal with pain most days. I feel your pain and frustration with the medical community. I just wantedo you go know that I am praying for you.

God Bless,

•´.¸¸.•¨¯`♥.Trish.♥´¯¨•.¸¸.´• said...

I am sorry you are going through a tough time.
I have NF1 too. I found you through google alerts.
I can empathise and be your cyber support :) .
YOU are doing the best you can and I will pray for you too.
You are not alone.