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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Has anyone had the surgery

my husband was just diagnosed with CM with about 8-9mm of tonsil decention. We have an apt with a neuro surgeon in the next couple weeks. But I've been reading a lot about the recovery and finding that it's hard to find people with CM let alone that have had the surgery. If anyone here has had the surgery would you be willing to tell me how it went and how recovery was for you? I've been reading 1m up to a year of recovery time with the possibility of it not even doing much to help symptoms. TIA


-freaking out wife 

Replies

Palika808
Palika808

my CM was at 23mm had the surgery last june I was off from work for about 3 months . haven't had any headaches and I work for the railroad.. best wishes and a speedy recovery
tmac1964
tmac1964

I had the surgery in 2008 and am very satisfied with the outcome. I had a syrinx that stretched from T-1 to T-11 and severe migraines and other issues. I still have an occasional occular migraine, every couple of months, but the chiari headaches went away. I would do it again. I wish him well. P.S. Make sure you check for references from the surgeon. I did, and felt very comfortable having it done after speaking to his former patients.
Babablacksheep
Babablacksheep

The surgery is stressful and the recovery is trying. (Like every other procedure ever) BUT sooner the better. Putting aside your husbands immediate suffering the effect of untreated enlargement in this area has implications for the entire spine. Compression can cause deterioration of disks and bone in adjacent vertebrae. Scary as can be I know but doing it quickly means less damage faster healing and lower risk. And confidence in your surgeon. You can tell with CM because if you get the deer in the head lights move on he or she has never heard of it and is confused.