Hi, I’m Kelly, Im 31 and from Illinois. I’ve been living with chiari symptoms since I can remember, (grew up having headaches,etc) but I was officially diagnosed in 2002 and had the decompression surgery with c1 laminectomy in 02. Since then I’ve been struggling to regain control of my pain. Ive had tons of tests, mris, csf flow studies, a shunt placed in 04 after losing vision in my left eye for 2months. I also have scoliosis, and degenerative joint disease, causing arthritis in my back. My hometown of Rockford has 3major hospitals, but not one of them has a specialist that knows what to do with me. Ive been seeing a pain specialist for the last 5 years, and I hate living on pain medication…does anyone have similar experiences, or suggestions? I also have numbness, in my arms and hands, frequent nausea, blurred vision, and muscle spasms…any help would be greatly appreciated, im getting married next October and im really afraid that I’ll feel miserable on my special day and not be able to enjoy it…
Kelly, sorry you are still having these symptoms. I do have a few suggestions, though. Many if us are low in vitamin D and have found that taking daily supplants of D3 help with pain, same with chelated magnesium. Arnica gel or cream is topical and helps with muscle pain. Have you been evaluated for Ehlers Danlos Syndrome and cranio cervical instability? I have read that about 20% of Chiarian have EDS (it’s genetic) and subset if those have cranial cervical instability- CCI mimics Chiari symptoms. Dr Henderson in MD is very thorough and fixes CCI. He has a long waiting list but it’s worth it if you are wanting to get to the bottom of it. Glad you found us.
Hi Jenn, thanks for replying-no I haven’t been tested for either of those conditions, how are they tested for? I’ll pick up some vitamins!
Nykki- I’m not “dopped” up, I have pain medication for break through pain. My mention that I hate them is true, I don’t want to have to rely on medicine to function.