Neurofibromatosis

Neurofibromatosis Awareness Month

This whole month has been filled with bringing forth awareness about a disorder that is not well known. Very few doctors I have come in contact know much about it, and friends and family know even less.

Many people with Neurofibromatosis, suffer in silence, their pain not acknowledged, their symptoms often ignored.

I often go to the doctor complaining of headaches. After an examination, one doctor gave me the diagnoses of migraines....but I knew I was dealing with something far more complicated than migraines.

It took several visits, for me to finally convince my doctor to refer me for an MRI. A week after my first MRI, I was diagnosed with NPH (Normal Pressure Hydrocephalus) and a Lipoma (brain tumor) I was also told that a small piece of my brain was coming down through my spinal opening.

If I was younger, a shunt would be the resolution to this problem, but both my Neurologist and Neurosurgeon indicate that a shunt surgery could do more harm than good.

Some statistics have stated that as much as 23 % with Neurofibromatosis also have some form of Hydrocephalus....Most go undiagnosed, until they are referred for a MRI scan.

For me, my hydrocephalus gives me daily "pressure" headaches. They never seem to go away, and often have peaks or times when my pain is not controlled by ANY medication. My vision and coordination is also affected.

Last year, I attended a SMALL NF symposium here in Spokane, where Dr.Judith Martin spoke. Not only did this "DR" compare living with NF to living with freckles or a large nose, she told everyone in the room, that a baseline MRI was not necessary for NF patients.

This information was not only WRONG, it was very offensive! Having Neurofibromatosis and having freckles is not the same-or even close. I often wish I was as THRIVING then, as I am now. I would have stood up and told this doctor off.

Also if my daughter Rachel, who is 7 yrs old, with NF1 did not have a baseline MRI, we would not have discovered the basal gangelia tumor, and many other issues going on in her brain, that were not symptomatic.

If not for me begging my Drs for a baseline MRI, I would have been left undiagnosed of my Hydrocephalus and brain tumor.

I have no idea where this doctor got her information, or the basis behind her beliefs, but it just goes to show you how misinformed so many people are about Neurofibromatosis. Even doctors do not necessarily know best.

NF Awareness goes far beyond family and friends. NF Awareness, must reach far further. Please, if you or someone you love is dealing with Neurofibromatosis, help by talking to people about it and ask questions!

www.ctf.org