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Old 05-11-2004, 10:55 AM   #1
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lindao1 HB User
Arnold Chiari Malformation/Dizziness

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. 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. 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

 
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Old 05-13-2004, 03:30 AM   #2
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Christine 35 HB User
Re: Arnold Chiari Malformation/Dizziness

Hi Linda,

Thanks for sharing your experience. I have had over 6 years a few of the symptoms youve described and read a bit about chiari and cervical stenosis. I have actually fallen over quite suddenly 3 or 4 times injuring myself. The dizziness is always there and seems to be getting worse. I sometimes get a feeling like Im falling and the ground had disappeared. Unfortunately in the UK, most docs dont know about this type of thing. I had an MRI about 3 or 4 years ago but it didnt show anything, although I have read it can be missed.

Im pleased you got through your ordeal, it must have been awful for you. Is the dizziness gone now?

Again thanks for sharing,

Christine

 
Old 05-13-2004, 10:30 AM   #3
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lindao1 HB User
Re: Arnold Chiari Malformation/Dizziness

Hi Christine!

I'm so sorry to hear you are having some of the same symptoms that I had to deal with for a while.

Yes, the dizziness is completely gone. I haven't had one single episode of it since the surgery. Yippee! Arnold Chiari will eventually show up in an MRI. Believe it or not, but you actually have "tonsils" in your brain. These tonsils will give an indication of the Chiari Malformation and they are referred to as cerebellar tonsils. You didn't mention your age, but Chiari Malformation works like clockwork in that it really doesn't show up until you're in the 30-40 age group, sometimes 50's. I never really understood how that can be but it does seem to be the case. You mentioned you had an MRI 3-4 years ago. I would suggest requesting an updated one since you are still exhibiting symptoms that could be neurologic. Especially since you are falling down. Remember the dr. initially thought mine would be MS but it wasn't. With this malformation, you tend to have the same symptoms as MS though.

Christine, I'm really concerned about you falling down and injuring yourself. To me, that would certainly necessitate an MRI to be current. I don't know how things work in the UK but if it takes a while to get tests approved, I would certainly start the ball rolling now. You need to emphasize to the dr. that you are injuring yourself when you fall. I know how frustrating and scary the dizziness can be. It's absolutely amazing that I no longer have that to deal with. Of course, I'm not saying that your dizziness and falls are a result of Chiari Malformation. There are many other disorders that would have the same symptoms: balance problems, inner ear problems, vision problems, autoimmune disorders, etc. But just to be on the safe side, talk to your dr. now about what you are experiencing. If he's worth his salt, he will pursue diagnostic testing which can diagnose the problem and then initiate the appropriate treatment.

Good luck to you dear and please, please be careful! Linda

 
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