WOW ! I have had lumbar Mri's done due to the back issues, but reading some of this makes me wonder if those "bulges" are just bulges. I really have to find a doctor that will see me for the Chiari. Hope you all feel better.
It is funny how so many Drs only look at the brain and cervical spine when dealing with chiari...and so many have a syrinx in the thoracic and or lumbar spine...and since tethered cord is a related condition, a lumbar spine MRI would have to be done for that as well....
There is a clinical eval for EDS, then if u test positive they would refer u to a rheumatoid Dr for further testing.
Thanks, Selma. I will try to find a doc like you suggested. I've never had my back scanned, only my brain & brain stem, so I imagine that there could be other issues going on that the doctors haven't looked at.
Hi...I had some really bad pain and valium was the only thing I had and it did not work.....
I still get it, but feel it is the EDS more so then just a chiari issue.....
Have u ruled out EDS?
The cold hands, the muscle pains...all sound like EDS pain that I am having......
I would suggest u try a rheumatoid Dr that knows about chiari and EDS and see if they can see what is going on....
I also have TC, so some of my back pain/spasms r from that as well....
There have been times I actually had a rib shift out of place and it was very painful to breathe...and the first time it happened I had no idea a rib was out....I was not use to these things happening or how to correct them....while at my DD's I turned the wrong way and pop, it hurt like crazy.....
DO look into this further if u have not done so.....
"selma"
Thank you- I am sorry to hear that you & Selma have the same problem, but it always feels good to know that we are not alone in our suffering...and that its not all in our heads! Have you found anything that helps? I've just left a message at my NS office aking for a refill on my muscle relaxer and pain killer Rx. I had given up on meds but now I hurt so much that I will give them another try!
i had my surgery 4 yrs ago and i feel the same pain. ive been to every kind of doctor and i always hear nothing wrong. Selma has the same pain