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Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index

Hi FunkyGirl. I'm sorry that you have been diagnosed with Chiari! It's no fun and I don't blame you for wanting to avoid the surgery if you can, or for as long as you can. I had decompression 5 years ago, and my 8 year old daughter has since been diagnosed with ACM I as well. Currently she suffers from only mild, occasional headaches that respond well to over-the-counter pain relievers, so we are not opting for surgery. My hope for her is that she will NEVER have to have the surgery, but that if she does, we can prolong it until such time that they improve the process vastly over what I had to go through.

Even though some people experience complete relief from their Chiari symptoms following decompression surgery, not all do, as I can testify. I would definately repeat it again if I had to do it over, as it got me out of a wheelchair and back to living the life I enjoy, but I still suffer from chronic pain and headaches.

Chiari headaches often feel like there is pressure inside your head (something like a sinus headache) and get worse when you sneeze, cough, bend over, or strain for a bowel movement. Sometimes my brain feels like it is "beached" also, and I can actually feel it "wobbling" in my skull because the flow of cerebral spinal fluid has diminished and is no longer "floating" or "cushioning" it in there. Even though I had the decompression, this sometimes still happens when I strain my neck area and get some inflammation back there. There's a LOT of scar tissue there, too.

I take Codeine Contin to aleviate the pain and headaches. This is a long-term, slow-release form of Codeine that keeps the drug level constant in your blood stream so that you don't experience the "highs" and "lows" that are typical of taking opiate based painkillers. For some people, very low doses are affective, but unfortunately, not for me. I take 200mg three times a day to keep my pain in check! It sounds like a very high dose, but it does not cause drowsiness or other "dopey" side-effects for me because my body is habituated to it. No-one ever knows that I'm on this kind of medication, and I live a totally normal life now - working, raising my kids as a single mom, running a farm and raising and training my horses.

If you can't take Codeine, there are other drugs available in the slow-release format, as well, such as Oxy Contin (percocet) and MS Contin (morphine). Many doctors are not comfortable with dealing with chronic pain such as we suffer from, so you may need to find a Pain Management Clinic or specialist to help you with this problem. It will be well worth the effort and expense! If one doctor will not help you, seek out another until you find relief, as it IS attainable. Your health is your responsibility and only you will take it as seriously as you should.

Remember - I went from wheelchair and housebound to happy, productive, (seemingly) healthy member of society. I firmly believe that YOU CAN TOO!

Good luck, and please hang around and let us know how you're doing or seek support when you need it - us "girls with funky heads" gotta stick together!


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