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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


Hi Kirafaye!

I hope I'm not too late! I just now noticed this post as I'm usually on the Pain Management board (but not because of the Chiari Malformation, I promise).

I had the surgery in 2000. At first the drs. suspected I had M.S. But an MRI showed it was the Chiari Malformation Type I. There are two forms of it: type I and II and the Type I is the "easiest" to correct.

My malformation was a biggy - the neuro. said it was the worse case he had seen. Just my luck - ha! I have a 9 inch scar from the occipital region down to T-1. My symptoms were severe dizziness (really bad and constant), excruciating headaches and neck pain, numbness and tingling in extremeties, falling down for no reason and ultimately blacking out completely. Also, I remember I kept saying, there's something wrong with the right side of my head. When I started blacking out, then I had no choice but to have the surgery. After surgery with general anesthesia, I was in ICU for one day and night, then transferred to a regular room. I'm not gonna kid ya and tell you it was an easy surgery. It was not. The pain was quite severe but controlled well with pain meds. They lifted my shoulder length hair up and shaved my head underneath. I went around with a really weird haircut for awhile, but at least I didn't need a wig LOL! :rolleyes: The back of my head was bandaged up quite a bit and it felt like I had a hugh, puffy pad on the back of my head. Needless to say, I couldn't lie or sleep on my back. Believe me, you don't want to! Anyway, after 4 days in the hospital, I begged the dr. to let me go home, saying I could be this miserable at home instead of couped up in the hospital. He said I broke an inpatient record for brain surgery - discharged in four days! I was sent home with pain meds, valium and phenobarbital. The two most common complications from the surgery are seizures and meningitis. Fortunately, I didn't have any seizures (they had me on the phenobarbital from day one) but I did have the complication of meningitis after being home one week. It was viral meningitis meaning no antibiotics or treatment. It just had to run it's course. No fun, but it didn't last long. I turned green a few times according to my husband but not much worse than that. After I was home, it seemed, if I remember correctly, that I had significant pain for a couple of weeks but it let up after that. And as I said, it was well controlled with the pain meds and valium. I stayed on the pain meds for about a month and after that I was OK. Two weeks after surgery, me and my weird hair cut even started going for walks with my dog around the neighborhood. Weakness was the last thing to get better. I was weak for awhile. Of course any surgery will do that to you.

Oh by the way, the piece of bone they removed from the back of my skull was not replaced. Now I have a "squishy" area in the back of my head. It stayed numb for about two years. They warn you not to use a curling iron or heat back there cause you will burn it and not realize it. It's common for them to leave the bone out. I joke and tell people I really do have a hole in my head - hee!

My dear, I hope I've given you some insight into what to expect and I certainly hope I didn't scare you. Brain surgery is no picnic but you will get thru it. I had the best neurosurgeon in my area to do the surgery fortunately. And as brain surgery goes, it wasn't as bad as I expected it to be. Naturally I was nervous before the surgery but they gave me something that made me real "drunk" until I had the anesthesia. At that point I didn't care - ha! ;)

I wish you the best of luck and a quick recovery. If I can make it thru this mess, anyone can! If I can answer any more of your questions, please let me know. You'll be over the surgery before you know it! God Bless. Linda :D





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