Hi...I understand ur frustration with drs and the chiari, stinosis dx......I was told my symptoms were not the chiari....I have finally been evaluated by a chiari specialist and found I also have EDS.....which brings me to this forum looking for others.
I was also dx with tethered cord...I would venture if u had a chiari related condition ur surgeon would have checked u for other conditions.The MVA could have caused a syrinx to form...was the accident after ur decompression?
I do know now that the EDS is a main supplier of my pain.
Selma, I never had a syrinx and after the accident was when the symptoms started. This was 15 months before the decompression by Dr. Oro. I'm pretty sure I don't have EDS or tethered cord. Thanks for the reply.
I may be wrong but I believe that autonomic dysregulation can occur after a multitude of injuries (chest, head, spine) etc. so you unfortunatley have a double whammy of both the injury and the resulting Dysautonomia.
I do know that pain is playing a big part in this as when the pain is really bad so are the symptoms of AD. The problem is that pain medicines make me feel much much worse with twitching, panic, and sleep is non-existent.
I have decided to go ahead with a prodisc-c artificial disc replacement. If I can get through a 4 hour procedure of them cutting a piece of my skull out, I can get through a one hour discectomy.
Some milder forms of dysautonomia can be triggered by trauma/injuries in general. Most of what I have read seems to indicate that this refers to trauma itself and not a specific type of injury. This applies, for example, to POTS ... though the explanations of the causes of POTS are largely anecdotal at this point.
More severe dysautonomia, as I understand it, can occur from traumatic spinal cord injury.
From the symptoms you described, it sounds like you are experiencing something more on the milder end of the spectrum. (Which is not to minimize your symptoms, this is a relative scale where the most severe forms of dysfunction can present life-threatening symptoms, whereas the bulk of us are rather facing something that is life-altering.) Have your doctors given you a specific diagnosis, or just dysautonomia? What type of specialist is overseeing the autonomic aspects of your care? What tests or treatments have they tried so far?
I searched for cervical stenosis/dysautonomia on PubMed and turned up 4 medical journal articles, none of which seemed to actually be related to your question. If there is a link, I don't think anyone has researched it or done a case study on it yet. Sorry I couldn't find anything more helpful. :-/
Thanks H for the reply. I may have some kind of autonomic dysfunction but there is def. something more to it. I get no relief. I have this intense electrical pain in my neck, chest, and arms. Sometimes it is in my legs, but it is constant in the other areas. When the pain is really bad my heart rate will shoot up to 130 when I stand, but when it is not that bad (not often), I can stand up with little increase.
I am constantly dizzy and nausiated, no matter if I am laying down or standing up. It is worse when standing up. I don't know maybe the amount of pain I'm in has something to do with it.
I do have gastroparesis, but I also read in an article that even though it is a common symptom of it, chronic nausea can actually cause gastroparesis.
Well I know that the disc is causing at least some problems, I guess I'll see what improvement I get when it comes out.