Hello everyone,
I am 19 months post op decompression surgery and I have struggled with chronic neck pain since my surgery and actually prior to that because I had a whiplash injury from a car accident which started my whole Chiari journey. The surgery did relieve my severe headaches and a few other symptoms. But, I did develop dysautonomia, and possibly POTS, although I haven’t had all the testing for that yet. I also have fibromyalgia and I was told that developed due to the dysautonomia and damage to my nerves and nervous system. Of course, many of my symptoms overlap in all these conditions, so I often wonder which one is causing the symptom. I do have issues with pain in my joints and randomly all over my body. Recently the pain has moved further down from my neck into my upper back right along my spine. It extends down to my mid back area. By the end of the day, it is excruciating. I’ve tried massage, trigger point injections and nothing relieves it completely or even eases it for more than a couple days. I was warned by my NS that I could have chronic neck pain as result of the surgery. My question is if anyone else has dealt with pain along the spine in the upper back after surgery? I just don’t know if this could be a normal side effect of the surgery or if I should contact my NS because of this change?
Abby,
Thank you for the information on EDS. I certainly have a lot of the symptoms mentioned in the above article. I will research it more and maybe mention it to my doctor. Ugh! I dread possibly having another diagnosis to add to my list. But, I would love some answers at least and something that would hopefully provide me some relief for this pain.
Lyn, you may also wish to join our Ehlers Danlos community. There is a link to it in the right hand column of the Main Page.
Lyn, you may indeed have EDS- google the Brighyon Criteria and the Beighton Criteria. You also may have a new, altogether unrelated to Chiari issue too- at least not related to your surgery. I would ask for a new MRI for your neck. You need to know why…we can’t assume it was from your surgery. Many people who have EDS have, or will develop cranio cervical instability. Here is a group if videos about CCI:
CSFinfo.org
Scroll to videos
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Watch anything about cranio cervical instability, EDS, of the complex Chiari patient.
Sorry you are having pain 
Jenn