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Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index

Hello everyone!

I have noticed on this board that many of you are having problems with dizziness. I thought I would tell my story to let you know about this rare Arnold Chiari Malformation and the brain surgery that followed.

Over the course of a year, I suddenly developed dizziness that would come and go at will. For awhile, I was able to just ignore it. Thought maybe it was just stress. Then I started suffering with severe headaches on the right side of my head. Of course drs. thought the headaches were migraines. I kept telling my husband and sister that it just felt like something was wrong with the right side of my head! Things progressed over time to where I could not concentrate and had difficulty focusing. And the headaches and dizziness intensified. Still I kept going. Then I started falling down. Yep, just falling down for no reason. I thought what a klutz I am! LOL! Finally one day I was on the phone to my sister when suddenly the dizziness crept up on me and I told her I better go sit down. But before I could get to the chair, I blacked out for about two minutes. My husband (thank God) heard me hit the floor and when he came in the room, my face was covered in blood as I busted my chin when I fell. Although I did black out, I couldn't really remember anything. Soooo, to the dr I went. He immediately ordered an MRI and said my symptoms could be MS. The results showed that I had an abnormal brain MRI but not MS. He sent me to a neurosurgeon. This dr. said I had a rare congential malformation calleld Arnold Chiari Malformation I. Geez, never in my life would I have thought I had a brain disorder. :eek: The neuro said this disorder usually shows up in people during their 30's and 40's. I was 47. Perfect timing - argh! What he said about this malformation is basically that my brain was too big for my skull and the excess brain material had dropped and was pressing on my spinal cord at the brain stem. What fun! This was what was causing all my weird symptoms: the dizziness, headaches, falling and ultimately losing consciousness. When it gets to the point of blacking out, they must do surgery. Talk about being scared! I was! The dr. said this was major brain surgery and a tricky surgery too because the problems are located at the brain stem which controls your breathing and other important bodily tasks. But since I didn't have a choice, I checked into the hospital. They did the surgery which I think lasted about 6 hours. When I woke up in recovery, I was in excruiating pain. They kept pumping me full of pain meds which barely touched the pain. They had shaved the back of my head only so for awhile I had a really weird hairdo! LOL! After surgery I was sent to ICU and stayed their for two days. Then I was moved to a regular room. The pain was unbelievable. And the back of my head was pooched out with this big bandage. I looked like a cone head - ha! The neuro told me the most common complications from this type of brain surgery are seizures and meningitis. He put me on an anti-seizure med called phenobarbital. It worked. Fortunately, I didn't suffer any seizures. But after I was discharged home (one week) I developed meningitis. Talk about adding insult to injury. :bouncing: Boy, that was no fun. The dr. said it had to run its course. Every time I got out of bed, I would turn green (according to my husband) and got really dizzy and sweaty. It would take everything I had to get back to bed. Slowly I started to improve. It was day to day improvements. When I went back to the neuro for follow-up he said everything was great. Yippee! So I had actually survived brain surgery. I guess not many people can say that. And not many people can say their brain was "TOO" big - ha! There are two forms of Chiari Malformation. I had the one that was not the absolute worse, thank God!

Anyway, for those of you who are experiencing dizziness that continues to progress, and you're around 30-40 years of age, please don't ignore these symptoms. Though Arnold Chiari Malformation and subsequent brain surgery is no fun, it can happen to people of this age group. Not all dizziness can be attributed to this malformation, just please don't ignore it especially if you have any of the other symptoms I mentioned.

I hope I haven't scared anyone. That was not my intention. I just wanted to let you know of this rare and problematic disorder that starts with just mild dizziness. Please take care everyone and if anybody has any questions, I'll be happy to answer them as best I can. Linda :D

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