Pseudo Tumor Cerebri Update

Sunday, March 14, 2010

I decided to do an update post on PTC as I have seen a lot of you have come to my blog by doing a search on Pseudo Tumor Cerebri.

When the neurologist first told me that I had PTC, it was actually a relief. He said it was actually very rare. Of course he had already checked for a brain tumor and MS. Hence my relief. Well, I have reason to feel relieved at this point in my life anyway.

See, I am very lucky and my PTC is controlled by taking one Diamox a day. I started out taking three. After a year or two, I went into remission for a year and a half. Even tho I had to start back on the pills it was only two a day this time. The worst thing I have had to deal with is my hands and feet tingling and not being able to drink anything carbonated. As time passed I was able to go down to one pill a day. Sometimes I don't even take one. I can tell when my body is starting to build up fluid real easily now before it can do any harm and a few days back on my pills take care of it.

The way we found out that I had PTC was my left eye was kind of dimming when I was in a bright flourescent room. I mentioned it to my primary care doc the next time I saw him and he didn't see anything and thought I was having occular migraines. Then when I started getting floaters I made an appointment to see him again and he sent me to my eye doc.

The eye doctor really scared me. He told me that my eye was hemmoraging and the most common cause was a brain tumor, and I need to get into a neurologist immediately. My neuro guy had to do a lumbar puncture to actually diagnose that it was PTC. That was not pleasant but it could have been worse.

I know that I am very blessed. My PTC could be alot worse. I have met or talked to several people who are worse than me. Basically all it boils down to be is a buildup of cerebral fluid that causes intracranial pressure that needs to be relieved. It can come out the eyes like mine did and can cause blindness, or build up in the spinal column and cause many problems. When the pills don't work, which are supposed to slow the making of the cerebral fluid, and eliminate some of it with a mild diretic, then there are shunts that are often used. I am not a doctor and don't profess to know all about this disease. I just know what has been my experience and from what my doctor has shared with me as well as what other people I have met with PTC have gone through.

If you have just been diagnosed with PTC, don't panic. There are support groups out there and actually alot of medical information now. Read as much as you can, and find a good neurologist that you trust. Praying that they find what actually causes this and they can figure out how to stop it from happening.