Guaranteed Healthcare

I am a 32 year-old female. I have been to the emergency room more times than I can count in the last three years. At one point I stopped going to the doctor out of fear. I lost my vision and various other symptoms for a short period in 04/05. I immediately got an MRI-which showed a cavernous angioma but no one informed me of this until I had another MRI this December. I was told I have MS like symptoms and to live life like nothing was wrong, but definitely come back if you have problems. I am not angry that I wasn't told.

Three years later I still cannot get anything done. I have done much research to find out that angioma's affect 1 out of 200 people, but because most people don't ever find out they have them until they are dead Dr's, ins companies and the like call them rare. how is 1 out of 200 rare. For the most part they are genetic, meaning my children have a 50/50 chance of having a cavernous angioma.

Once I was actually diagnosed, it was a day I will never forget because my doctor said I had an aneurysm, because she wouldn't refer me to anyone and she didn't understand what a cerebral cavernous angioma is. I had to call back and demand a neurologist apt. My regular Dr who diagnosed this actually said, "Well your heart is enlarged on the left side and you have a brain tumor, but other than that you are OK."

So, guess what? Some neurologists don't really know a lot about this either and neither do a lot of other health care professionals. I got information from the national organization for rare diseases or NORD. pretty much why research something that people aren't medicine dependant, brain surgery is expensive, and most people don't know they have this. Except, here is the information I got there is a higher incidence of this brain tumor in children not adults and a larger size incidence in children and children have more of these than adults.

There is a huge proportional difference between children and adults. What happens for the tumors to be smaller and less incidence in adults? Death of the child that has the tumor. No one wants to say this, but talk to a parent of a child that has a brain tumor.

There is so little research out there for anyone child or adult. I am praying my children don't have this. I have to prove to the insurance company that two other people have this disease in my family before they will test my children. Even though I have the genetic form of it. Also I have to fight to see someone who has experience dealing with angioma patients. The complete day I spent on the phone asking the question itself was almost funny. I found out the hard way I should have been referred to a cardiologist in the first place too.

My Dr really saved a lot of money for that insurance company by not doing anymore tests or referring me to expensive specialist though. The words BRAIN TUMOR scare a lot of people: Even some celebrities like Ms Elizabeth Taylor have this tumor and chose not to come out and raise money because of the stigma.

I read a story about a person with this tumor who lived in UK and they got immediate help and surgery. How is it that I can't even get to the right Dr after 3 years? It's a good question. I will spend most of the rest of my life fighting for more research, genetic testing, and awareness for the angioma alliance.