Newly diagnosed and looking for relief

General
1

Hi everyone. I was diagnosed with Chiari about two weeks ago. I've suffered from various symptoms, but mainly headaches, for about a year and a half. The headaches have been getting increasingly worse. I wake up with a headache and go to bed with a headache. I usually have about 4 good hours in my day. Is this normal? Or extreme? I only saw my neurologist twice before he ordered a MRI and diagnosed. He was pretty much useless. Just throws more pills at me. Unfortunately, I have an extremely sensitive stomach and most make me sick. I've found 800mg of advil and lots of coffee helps some. Rizatriptan helps, but I only get 24 pills a month. So I'm put in the position of judging how bad the pain is before I take a pill… I see a neurosurgeon next week.

My questions are: Is there anything else to help Chiari besides surgery? The cranectomy (SP?) looks terrifying. A friend of mine found an institute in Spain that treats something called Tethered Cord Syndrome. Has anyone heard of this? Seems like a much more minor surgery than the cranectomy. But its not mentioned much in the US. Why?

Also, how can I get some relief sleeping? I get terrible lower back pain and when I wake up in the morning, the first hour is filled with excruciating headaches. Is there a pillow or position that helps?

I really felt like the neurologist I saw was totally unfamiliar with Chiari, but tried to pretend he knew what he talking about. I learned more from the internet. How do I go about finding a doctor who is familiar with this?

Thanks.

2

Thanks Emmaline. It is overwhelming. I'm trying to learn as much as I can, but there is so much! I'm not double jointed, so hopefully that is one less complication to worry about…

3

Not everyone with a Chiari Malformation has tethered cord syndrome. If your NS is familiar with Chiari he will probably evaluate you for tethered cord before recommending a decompression. If you have tethered cord then that will most likely be operated on first to see if that corrects the herniation of the brain. If not then decompression would be back on the table. I personally did not have tethered cord or any other related conditions so the decompression surgery was a big help to me.

I agree that most of us have had poor experiences with neurologists. Let us know how your appointment with the surgeon goes! :)