spine surgery

[stormtracer]

can neurofibromatosis cause spinal stenosis

[Dawnmist]

Hi, I am almost 40 (yikes) and the worst for me has been my leg, the physical appearance is whta is hard for me. NF can be hard on the self esteem, thankfully I have a wonderful husband who could careless if I was yellow with purple poka dots.
My son however has a brainstem tumor so I am well aware of the extreme s NF can have. I hope you find the treatment you need.
One thing I can tell you is beware of certain chemos, like temodar , it can cause lukemia in people with NF, and radiation is also a no go for people with NF. Good luck.

[Esplanade]

I am struggling with this as well. I am middle age and now going through a host of tests and always with the possibility of the "bad diagnosis" that  one of these tumours have changed and progressed into malignant.
I currently have a chest wall tumor ( 6.1 cm ) with thoracic spine involvement. I don't know if the two are of the same tumor, or two different tumors.
It's difficult, learning " to live with it" is true to a point. But don't give up hope or the possibilty that someone can help.
I am currently fighting doctors that have the attitude that  have  the " learn to live with it" attitude. It mainly comes from lack of knowledge, lack of compassion" or  that neurofibromatosis can become very involved and one needs a good commitment from your primary Doctor to keep up monitoring. Each person afflicted with this is different. Some have limited affliction, others have extensive. Sometimes it is progressisve.
I have  the progressive, and they don't know what to do at this stage.
Don't give up,

[Dawnmist]

NF type 1 can cause bone diformites. including scoliosis (curvature of the spine) this can be corrected by surgery.
I have NF type 1 and I suffer from pseudoathrosis of the tibia. Basically this means "false Joint" I had 12 operations to correct this and by all rights should not have my leg today.
NF can cause all kinds of off the wall things, but all I can suggest is to learn to live with it the best you can as there is little or no treatment for us.

[Dr_Veena]

Hi,
    How are you? Neurofibromatosis, is a progressive disease with involvement of the skin and nervous system as well as other organs. Neurofibromatosis (NF) occurs in two distinct forms: Type 1 (NF-1, von Recklinghausen's disease) and Type 2 (NF-2).

Early symptoms of Type 1 neurofibromatosis include multiple skin lesions (called cafe au lait spots) that appear during infancy. These lesions can occur anywhere on the body and become more numerous during childhood. During adolescence, benign tumors may develop on the skin (cutaneous), under the skin (subcutaneous), and in connective nerve tissue (neurofibromas). It also causes scoliosis, which can lead to spinal stenosis, hearing loss and learning disabilities etc.

In Type 2 neurofibromatosis, tumors frequently develop on the eighth cranial nerve (called the vestibulocochlear nerve), causing symptoms such as dizziness, ringing in the ears (tinnitus), loss of balance, and significant hearing loss. Symptoms of this type usually develop during adolescence or early adulthood. Skin lesions do not always appear in Type 2 NF.
Hope this helps.
Best.