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Chiari Malformation patients

Aug 23, 2015 6:03 PM

Is anyone on here have current chiari or decompression surgery that you still have problems with. Just looking for someone that can relate. In addition to that I've had Fibro dx for 15 year. RA , migraines, cfs,. Anyone??

Aug 23, 2015 6:29 PM

I have Fibro (20 years) degenerative joint disease, degenerative disc disease, cervical spondalytic Myelopathy, scoliosis at T7, spinal spondylitis, among other things. I've had surgery for impingement in my left shoulder, left knee with mangled meniscus, etc... I've had approximately 28 surgeries in the last 24 years. It's exhausting, extremely painful and the whole thing just sucks. I also suffer from
Migraines because of the problems that I have with my neck. I've had a spinal cord spinal stimulator implanted and it was revised approximately 4 times and it has not helped the pain. Now, there have been so many laminotomies done and re-implanting the neurostimulator that it is a constant source of pain. I wish I had better advice for you (or ANY advice for that matter). I'm sure there are others here that can help you better than I have done. I wish you all The luck in the world that you find the help you are looking for and that you also find the support you need from the wonderful people in this community family. That has gotten me through so very much. I'll keep you in my prayers-💕🙏🏻🌻

Aug 23, 2015 6:49 PM

Thank you for your kind words. I will keep you in my thoughts and prayers

Aug 23, 2015 7:24 PM

Gammy, I have very mild spina bifida at L5-S1(fully ambulatory, slight weakness in legs and patchy areas of numbness) but no Chiari or decompression. Sorry can't be of more help at this point in. Just diagnosed in January of 2015 at 34 years of age.

Aug 24, 2015 12:15 PM

Hi. I have Chiari, and have had decompression surgery. The surgery was in November of 2014. I still have many of the same issues I was dealing with before the surgery but I have to believe the surgery will help prevent future issues from arising. I understand how it is very hard to find anyone to relate to. Let alone any who understands it. I'm here if you ever want to chat or share stories. Hope you are having a good day!

Aug 24, 2015 12:21 PM

My surgery was in 09. My pain doc says I have occipital nerve damage. My neurologist says it's migraines. Waiting on insurance approval for BOTOX thru neurologist. Hoping and praying it works. I would love to chat. I'm actually feeling decent today so I'm going to attempt the grocery store. Ugh

Aug 24, 2015 12:35 PM

I also go to a neurologist that specializes in headaches and receive botox every 6 weeks. I have gone in for 3 treatments now. The first time I was not too fond of it but I also had a terrible headache. Now after the 3rd treatment I have to say the headaches are less intense, but still there. However, they have diminished enough for me to keep going. Most of my pain is on my left side and since my headaches are not as intense I'm starting to really notice my joint pain. Little by little I'm just trying to figure this whole thing out, while trying to stay optimistic at the same time.

Aug 24, 2015 6:00 PM

I'm praying they work for me. I'm so glad that they are helping you. Tragically when one type of pain lessons the others appear. It's a Neverending battle

Aug 25, 2015 8:13 AM

Hi gammi. I have chiari and have had 2 decompressions. 2004 and 2011. Have occipital neuralgia as a result. The chiari apparently is ok. Now have an occipital nerve simulator for pain which helps a bit but still in constant pain.

Aug 25, 2015 7:27 PM

The stimulator did not work for me. Nothing the have done has worked.

Oct 21, 2015 11:52 PM

New to the group, I have not had the decompression surgery, I have decided to try everything possible before having it, just had another ESI ( praying this one works ), will have the radio frequency ablation in the next month. Prayers for you as we all need them.

Jun 20, 2017 2:27 PM

I have chiari malformation I was decompressed June 13,2016 and I still have issues.

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