I have always been told that I have an "old soul"... but never would I imagine that my new doctor would look at my MRI and tell me he thought he was coming into the exam room to meet a 70 year old woman.
Having Neurofibromatosis, doesn't automatically qualify you with also having Hydrocephalus, but lucky me, I got diagnosed with both in 2007!
About a year ago, I wrote about my experience being diagnosed with NPH (Normal Pressure Hydrocephalus) and a brain tumor. My fear heightened, when I was told by my Neurologist at the time, that there was nothing that could be done for me.
I was sent on my way, with no solutions for the pain and more fear than ever before. I was frustrated and angry that these supposed "specialists" were offering no help...and pretty much dismissing me entirely. What was I supposed to do? Where was I supposed to go?
I was ready to give up and just accept that THIS was my reality.
Yesterday, I met with a new Neurologist...The move to Denver caused us ALL to find new Drs...And...Giving up just isn't in my nature, I guess.
My headaches have gone from bad to worse these last few months, and I was desperate to find someone who would listen to me and take me seriously.
Dr. Oh in Aurora did just that. Not only did he listen to me...He HEARD me. He told me that never in his practice has he seen a 30-something year old woman, with hydrocephalus, walking around and living a semi-normal life.
He compared my MRI to that of a 70 yr old woman.
The brain tumor I have, which has been called a Lipoma, is now being further investigated. The likelihood of a VP Shunt is now becoming more of a reality.
I was given a full Neurological exam and told that a team would be put together to discuss my case. I am elated, but at the same time, scared to death.
Sometimes you have to scream, in order to be heard. Doctors are not miracle workers, and cannot read your mind. If you don't fight for what you believe in, you probably won't ever get what you need...or want.
I am tired of being ignored. Tired of being told - "There's nothing that can be done."
So....I continue to fight. Scared or not.