Surgery DOESN'T help? Could that be true? What about Botox?

Yestersay, I took my daughter, Lynn (13) to a new NL at the Swedish Pain and Headache Clinic in Seattle to discuss Botox. It feels like a last ditch kind of thing since she's tried everything else under the sun. The doc there said a lot of people have "good results with Botox." BUT, I wonder, when it wears off, I think she'd be back to square one and secondly, when I read the material, looks to me to be about a 10-15% "good result" over placebo. The NL then said she could try an injection to the head and neck (Bupivacaine) for temp relief while we think over the Botox thing. Lynn thought she could try it and maybe get ONE pain free-day out of it AND perhaps after her shoulder massage tonight, one thing would lead to another and get better...

Well, the whole scene was awful and it did nothing besides leave her feeling sad and scared of a future full of endless headache (as it's been for 18 months).

PLUS the NL said surgery for Chiari 1 DOES NOT HELP, the pain always returns. I don't think that could be true could it??!! Has anybody had surgery for Chiari 1 and gotten better??!!

I'm so sorry your daughter is suffering and not feeling well. I'm sure as a parent it breaks your heart not being able to soothe her! You'll hear this over and over on this site...... Decompression surgery is a treatment, NOT a cure. The surgery only helps stop the progression of Chiari. Most of us still suffer from the majority of the same symptoms we had prior to surgery. Not to say some people don't have some relief, but usually still have symptoms. 8 years later i still have chronic headaches/migraines, difficulty swallowing, body pain and tremors, etc. BUT I wouldn't change a thing. I'd still have the surgery! I was to the point of needing a wheelchair if I waited any longer. So I thank God everyday that I am not in a wheelchair and have learned to embrace the Chairi and do the best I can. It's hard to hear as a Chiarian, so as a parent of someone with Chiari i'm sure it's even more difficult to see your child suffer. I have not tried Botox (although my NL has suggested it) but I work at a hospital and it's done all the time and alot of people seem to have relief.

Best of luck to you and your daughter. Please keep us informed as to how she is doing and what's going on!

XOXO Monique

THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!