Chiari Malformation Community
chiari malformation
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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chiari malformation

just been told i have Chiari Malformation and need surgery in a few weeks worried about the aftermath of the operation and how to cope with the pain etc .
Do u  have a big scar?   does your hair grow back over it ?   how best to manage the pain ?   how long does the recover take ....
as much information from people who have had this surgery done i would be so grateful .thank u
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Most of the information you're asking about is on these boards. Just check around and read our stories. But as a basic primer;

If you look at my picture that's the back of my head. The scar is noticable at first, but they don't necessarily shave you bald, just a section in the back. I tend to keep my hair short and told them they could shave me completely if they wanted. Assuming you are a female, if you have mid-to-long hair, it won't really even be noticable after a week or two.

You'll spend a few days - maybe 4 - in the hospital and I'm not going to lie to you -the first couple of weeks can be pretty bad. But you'll start feeling better pretty soon - and depending on how bad you feel now, you'll start noticing an improvment very soon from your daily life. You'll be offwork for around 6 weeks (assuming you work :))

As far as pain managment; the doctor will give you a generous supply of pain pills. The first few days at home try to keep them in your system. It's much easier to keep the pain down, than to try and get it down in the first place. Let your body have a chance to heal when you get home. Don't push yourself to hard the first little while.

I was able to walk up a flight of stairs as soon as I got home, but I stayed mostly in bed the first 2 or 3 days. Then slowly got stronger each day and spent more and more time "up".

There are pillows designed for this kind of surgery - they're talked about on these pages a few times, but maybe someone else can direct you to them. I didn't have one and had to make due.

I wish I'd have known about this forum before my operation.

Good luck and keep us posted.
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everyone is so different . first make sure your dr. is a expert in Chiari . also I didnt have any hair shaved . some do some dont. Recovery is about 6-8 weeks . If your chiari is fixed you shouldnt haveany pain . but for the first few days I just took tylnol . who is doing your surgery ?
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