Arnold-Chiari Malformation Support Group

Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.

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deleted_user 06/26/2011

I was diagnosed with Chiari Malformation in 2008, on only the left side of my brain. Since the neurosurgeon does not know that surgery will be beneficial, he refused to operate. I am getting an MRI within the next few weeks to see if my Chiari has spread to the right side as well, but until then, my pain doctor will not do anything to help. We have tried physical therapy, accupuncture, numerous pain medications and preventatives, and recently we have been doing cervical facet blocks on the left side. I am in constant pain and was wondering if anyone had any other ideas? Things that have worked for you, when surgery was not an option.. Any ideas would be helpful!

deleted_user 06/27/2011

I've tried energy healing which was really beneficial in reducing pain with out using medicine and it just helps your body be less stressed
and I'm starting biofeedback tomorrow, I'll let you know my thoughts on that

deleted_user 07/08/2011

May God bless you...and soon! Please find a real pain management physician. We drive almost 2 hours each way and its worth it. This pain does not respond to the frontline pain meds and the tissues become inflamed. Without pain management you will begin experiencing more frequent infections, catch every virus, becaue your immune system will be working on the pain. I am so sorry. My daughter uses self soothing too and it helps. Hot tubs, hot showers help too. But the last 6 months with a real pain dr. has provided the only decent relief in 6 years.
I hope you have someone nearby and you might have to consult several, again, worth it.

deleted_user 07/08/2011

PS. I think you need to consult another NS. One who deals with this every day all year.

Best to you.

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