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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Just diagnosed with Chiari Malformation

I have so many questions about Chiai....it will just tell my story for now, wondering if it's normal. About 6 years ago I fell and fracture my spine. Before that happened I had noticed I had been falling quite often, had back and neck pain, and hearing loss.i also noticed I had this foggy feeling in my head, hard for my to find the right word to say and my vision was blurry and had not been feeling quite right. Fast forward, the last few years I have been dealing and treated for back and neck pain. I finaaly decided to go for a second opinion and this one tells me I have hyperreflexia, loss of pinprick sensation, etc. and felt I had a spinal cord injury in my neck. After 3 MRI's and a myeologram they said I had Chiari Malformation.my report states there is an inferior protrusion primarily the right cerebelia tonsil through the foramen magnum by approximately 1.3 CM and the left appx. 6mm. Within the occipital tissue there's an appx. 2 cm lipoma. I have been reading up on it and wondering what all this means. I live in a very rural area,and I am going to be seen by a neurosurgeon who is going to refer me to someone more specialized in this area. Should I be worried, I have so many of the symptoms, I am beginning to wonder if I should be more concerned.

Replies

KatLin
KatLin

Hi I'm sorry for what you are going through. In 96 my closest friend went through this. At first they thought she had MS. Mostly she was hit with severe head aches , vision changes, weakness on the left side of her body and some falls. She has always had issues with any weight pulling on her neck we just didn't know why. It was quite by accident that a neurologist in a larger town they sent her to found this. Back then it was very rarely diagnosed in adults and they told us most children died if not diagnosed and operated by a certain age. Thank god for science advancement.

My friend says make sure you have a good surgeon. It is or was in her time a very serious surgery because of the area they are working on. It may be different now its 17 years ago or so? Any way more may be laser now or whatever. For her they did an open procedure on the back of her neck they had to open the vertebra first 2 just widened them a bit . She was in ICU for 2 days then on the ward for a week then she discharged but had to be off work for maybe a month. She has done well a few headaches but everything else resolved. I hope you do just as well as she did with your treatment.
pinkpony66
pinkpony66

Do not have any procedure done unless that doctor had extensive chiari experience.

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