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Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index

Maria, Sorry I just read your post - spend most of my time over on the Pain Management boards but not because of Arnold Chiari Malformation (just to assure you!).

Yes, I have had it and yes, in the year 2000 I had to have surgery for it. It is a congenital defect (you're born with it) where your brain droops down into your spinal cord. In essence, your brain is too big for your skull so the excess has to go somewhere and it conveniently goes to your spinal cord. Although you are born with it, symptoms usually do not show up until around ages 30-45. They don't know why that's true, but it is.

I was diagnosed with AC back in my 20's (I'm 50 now). The dr. said if I wasn't having any problems with it, then don't worry about it (they only discovered it while looking for a disc problem in my neck.) So I didn't think about it or worry about it and was fine until 1999. At the end of 1999, I started having some strange symptoms: excruiating headaches, neck pain, dizziness, eye and ear pain, sharp pain on the right side of my head (I would tell people that I felt like there was something wrong with the right side of my head - it just felt weird); then I started falling down for no reason - I felt like a klutz! Kept trying to ignore all of the symptoms (really felt sick for many months) UNTIL one night I got real dizzy, fell, blacked-out and busted my chin. My pcp ordered an MRI( before he got the results he thought I might have Multiple Sclerosis as symptoms are similar) which again showed the Arnold Chiari and he decided to send me to a neurosurgeon. The neur dr. said it was the AC and the only remedy was brain surgery - ugh! I was scared to death! Well, had the brain surgery July 2000. I can't say it was pleasant as no surgery is pleasant, but I was in ICU for one night and went to a regular room the day after surgery. Stayed in the hospital for five days and was released. Recovered at home for 6-8 weeks. No more of those weird, indescribable symptoms!!!! During surgery, they take out a portion of the brain that's "drooping", after removing a small part of your skull. That area is then patched. That part of the skull is not replaced with bone and even to this day, to touch back there on my head, it's real soft and squeeshy. The dr's warn you after going home not to use hot curling irons or blow dryers back there as you won't be able to feel the heat and can burn yourself. Guess what? Happened to me. Not a bad burn, but still the smell of burning hair stinks - ha! Eventually you gain feeling back there somewhat but still part of your skull is missing. By the way, my neuro only shaved the back of my hair underneath, so I didn't even have to wear a wig.

I know I'm trying to give you as much info as possible (maybe more than you want to know!), so I hope I'm not overloading you with too much. Arnold Chiari is a rare disorder and it is scary to be diagnosed with it. It took me a lot of research to find any info on it at the time of my problems so I know how "not knowing" can cause even more fear and stress.

Let me just leave you with some words of encouragement: since my surgery, I have had no problems whatsoever. My only suggestion if you ever do need surgery, it to find the best neurosurgeon possible. There are a lot of things that can go wrong with brain surgery, especially seizures afterwards. Fortunately, I didn't have any problems because my dr. put me on anti-seizure meds prior to surgery. I did develop surgical meningitis which is quite common from what I was told. I was home several days before that occurred. It ran it's course and then I was fine.

Most dr. will not do surgery for AC until symptoms become bothersome or interfere with daily living or function. The neuro told me I had a severe malformation.

Maria, hope this info helps and doesn't scare you. Just know that if you do have the AC, it can be taken care of. I know I've probably left out alot of pertinent info since it's been 3 years, but if you have any more questions, or if I can help you further, just let me know. Best Wishes, Lindao1 [img][/img]

[This message has been edited by lindao1 (edited 07-18-2003).]

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