Hi,


My name is Robin, and I live in New Jersey. This is certainly not an e-mail that needs to be answered right away, but I wanted to share my story with you
for you to use as a benefit to anyone who it can possible benefit.

I am a 41 year old female. After having my first daughter, in July of 1999,The headaches that I had endured for years started getting worse.. These headaches were so bad that there were times I actually left work and went home to sleep before having to pick my daughter up at daycare. At one point, I think I had seen approximately 6 Neurologists. The last one is the one I remember vividly.



My husband and I went to the appointment together. He is so good to me it's scarey sometimes. We were meeting with a new/different Neurologist we had never seen before. After an exam (which was more half assed than I care to remember), the doctor proceded to prescribe Imitrax and some other migrane medicine to me and told me to take the samples he would provide, see which one worked and fill that prescription. My husband asked the doctor, as we were basically told "You have classic migranes", aren't you going to schedule and MRI, or Ct scan or somthing? By the way, this appt. was on a Thursday. Why I remember this, who knows! The doctor said no, it's not necessary.

Her headaches will be fine with this medicine.

I proceded to go to work that Friday, continued my regular routine on Saturday and Sunday and was feeling worse by the day. By Monday, I was crazed and Tuesday, sat at my desk and cried until my husband came to my office to pick me up. We called the Neurologist and asked if we could come in for him to see us again only to be told that "You have to give the medicine time to get into the system and work." By Wednesday, I was still in bed, crying constantly, but held out one more day til Thursday when we called the dr. again and was told the same thing. All I did was sleep, and take pain killers, so the days passed without me really knowing. By Friday, my husband insisted we get into see the dr. but he still wouldn't see us. Off the the emergency room we went. They immediately did a CT scan into an MRI machine and then with contrast. We were told we had a brain tumor, and they were calling in a neurologist. Funny thing is we told the hospital that we didn't have one because we didn't want them to call the moron we went to, so they said they'd call the house Neurologist.

Guess who that was! I wouldn't let the man near me. My husband was ready to Shoot him. I honestly feel if there was a blunt object in reach, he would have committed murder.

We were finally told that it wasn't a tumor but an arachnoid cyst. Resting on my brain stem and spinal cord and required surgery, almost immediately. They called in a Neurological Surgeon to look at the films and my husband, again, the greatest man on earth, a pack rat pulled out films from 1997 to compare the new ones to.

So, by Wednesday, off to the OR I was. They told me in the long run they were only able to get 40% of the cyst, because of the placement so a shunt was put in
to keep it from building up again and the pressure becoming unbareable.

Well, to make a long story even longer, I'm so sorry, I felt better for a long time, but today, I sit here and wait for a phone call from a Dr. Sisti. One of the top guys at Columbia Neurological Institute in NY who is now presenting my case to the panel.

He says I never had and arachnoid cyst, but an endodermal cyst, and can't understand what is going on.

In pain and waiting for answers....Here I sit. No one understanding me or my pain. My feelings or my thoughts.

I found your site by accident but my what a good accident it is!

I hope to have been able to help someone in need to just open up has helped me tremendously. I know I'm ending this note without an ending, but I don't have one to tell you as I sit here now, waiting. Thank you for listening.

Robin