Chiari Online Support Group

Had second opinion

Hi all, so after waiting for months to get my nerve up and ask for a second opinion, my in clinic appointment is changed to a phone appointment. New NS starts right off telling me how he read my chart, talked to the 1st NS then proceeds to say per some study that of those patients who have the full decompression a increase % of symptoms come back over time, get the picture. It seemed like he wasn’t too interested, I dont know maybe they can’t do anything, but it felt like it was a “sorry but you’ll just have to live with it” once I mentioned neck pain it was like he shut off with a “surgery cant help with that” opinion. I was able to get another MRI ordered so he can look at my neck vertebrae. My hands are numb daily and my GP said its probably due to pinched nerves in my neck. Sorry I get carried away sometimes and go on and on…
Thank you all for listening and sharing with me, it helps knowing there are all of us out there who understand

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So sorry to hear this…I understand your frustration. You know your body better than anyone. You have to be your own advocate. It is certainly frustrating to say the least. My daughter’s second opinion was very much a regurgitation of the first. I will not give up, nor should you. Once this Covid craziness slows, I’ll be back to beating on every door I can to get answers. Sending prayers for healing and comfort :purple_heart:

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Dear NWUSA… Sad to report that most of all symptoms I had that led to Decompression Surgery and Removal of the first vertebra reappeared with a vengeance. I was left dealing with surgery pain in addition to original symptoms. Migraine pained ripped through my head like nothing I ever felt. I found myself in the ER at least 15 times after what was deemed a surgical success. I gave up hope in believing that my decision to have the surgery was justified. After countless MRI’S ER Visits suffering with migraine pain my neurologist recommend Botox injections. I agreed to have the injections and completed 3 rounds. I finally reached the conclusion that the injections were no longer relieving my migraine pain. I knew exactly where the source of the “migraine?” pain was coming from … My neurologist referred me to another specialist at the Ohio State University Hospital the Department. The name of the facility was called The Center for Neuro Modulation. After seeing the neurologist and other colleagues I was diagnosed with Bilateral Occipital Neuralgia … My response was say what now? I didn’t know anything about any of it. Treatment for this condition involves cutting open the right and left sides of my head just above each ear to insert some type of electrode around my occipital nerves. The idea is brilliant but certainly not as effective as it should be. I said no thank you and knew without a doubt that the procedure could turn into pain very quickly!

I hope you receive the care you need to get thru each day! God bless you and stay healthy!!!

Yeah, NWUSA… I am 8 years post-decompression surgery, and I have a few symptoms re-occurring. I find I can control the severity of the symptoms with diet and exercise, tho. I don’t know how old you are. but I’m over 60, and was diagnosed with degenerative disc disease as well as osteoarthritis. Both of these conditions probably contributed to the Chiari’s as well. If I maintain a good intake of calcium-magnesium-vitamin D, and keep away from lots of sugar/carbs to reduce inflammation, I can do alright. The backbone still wants to crumble!