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To start: My husband was diagnosed with Arnold Chiari Malformation shortly after we got married.  He has always had severe scoliosis; he was told it was because he was a preemie. His scoliosis often resulted in pinched nerves, and when he developed a badly pinched nerve in his upper back we assumed it was the upper curve.  He went to the doctor and did some physical therapy, which did nothing for the muscle pain or spasm.  We were referred to a spinal specialist for his scoliosis to be evaluated.  The specialist performed several tests and referred us to a neurosurgeon for a potential brain tumor.  Over the next few months (by which time we found out I was pregnant) my husband's symptoms got worse.  He began to have trouble walking and used a cane, then a walker, and finally a wheelchair.  Then he began to lose function in his left side as well.  We finally got the results back: it was Arnold Chiari Malformation.  The malformation on his cerebellum was compressing one part of his pinal column and restricting half of the flow of the fluid, resulting in the loss of function on his left side.  Surgery was our only option by this point.  My husband had brain surgery six weeks after our daughter was born.  They cloned tissue and formed a "bungee" to hold his cerebellum back and shaved off the backs of the vertebrae in his neck to improve the spinal fluid flow.  A year later, he is in great shape.  He regained all of his nerve and muscle function within months and received a clean bill of health from the neurosurgeon last summer.  He still has some problems; namely he gets very bad mood swings when he is under stress.  We are hoping our daughter has not inherited this from him, but have not been able to get a good answer from any doctors beyond "wait for her to show symptoms"  My husband's didn't show up until they were life-threatening.  Hopefully if she has it we will be able to catch it before that happens. 

by on Apr. 17, 2010 at 3:32 PM
Replies (31-31):
cupomeow
by New Member on May. 30, 2012 at 7:28 PM

Hi, I was diagnosed June of 2003. It was an accident that i was diagnosed at all. I went to the doctor because I was having headaches. The doctor ordered an MRI and it turned out that I had a sinus infection which was the reason for thoseheadaches but they also discovered that I had ACM. It was a 10mm herniation. I was given Maxalt for the pain and told to follow up if I started having symptoms. I went back in 2009 for a check-up and this time the neuro ordered a spine MRI to check for Syringomyelia. I did not have Syringo but they did find that I have loss of cervical lordosis (my cervical spine does not curve properly) and cervical spondylosis (like arthritis from my understanding) I have not had surgery and won't until my symptoms become worse.I had a consult a few months ago but since my symptoms have not progressed no MRI or further talk of surgery. Right now my biggest complaints are that I am tired and have some problems with my balance. As far as pain, I have more pain in my spine than in my head. I take Mobic and it is great. I tried p/t for a while but while it felt good at the time, it was too expensive to be worth it with bad insurance. So basically I feel blessed to be doing as well as I am for now. I have researched and read just about everything I can on Chiari. I am no medical expert but am here to help where I can.

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