Update on recent findings for my daughter

[DizzyGirls]

I've been posting various symptoms and happenings regarding my 20-year-old daughter since last year and thought I would give you an update for those who have been following our horrible journey.  She's had spasms, various involuntary movements, vertigo, debilitating pain, bladder issues, severe abdominal bloating, arms going to sleep, almost no circulation for days, then too much circulation (erythromelalgia), migraines, etc. all in addition to her Dysautonomia and EDS. 

We have long thought that this stemmed from a problem in her neck, but as different symptoms appeared, sometimes it would lead us to something different.  Using the scientific method that we've all been taught in school, we applied it to her.  Our hypothesis finally became theory the other night as she struggled to stay conscious amid sharp shooting pain from her neck all the way down her spine, a migraine, involuntary movements, muscle spasms,  debilitating pain, arm that went limp and her body with almost no circulation.  The only thing she wanted to do is to see her chiropractor.  I know different people have different opinions on them, but ours is a real gem.  She understands her dysautonomia as well as her hypermobility of her EDS.  I told her we needed to take a conservative approach to treatment, so there were a lot of pressure points that she did on her as well as this little thumper thing that she does to the areas that we want to be super careful with.  She was finally able to do one maneuver on her, that was better, then the second.  All of a sudden she looked at my daughter and my daughter looked at her and they both said "wow" together.  Our chiro asked her if she felt that, and she said oh yeah!  That was your spinal cord being released, she said.  Huh?!  She said it was stuck somewhere in her upper cervical area and when she did the second maneuver, it released, we could hear all of her vertebrae just popping into place on their own, and with it all of my daughters symptoms (for the moment) were so much improved. 

It won't stay, as we have seen images from her MRIs that are beginning to indicate either Chiari and/or cervical instability.  Need to have them done with flexion/extension this time so that someone can measure all of her angles and come up with a plan.  Katybug has been helping me get into contact with some people regarding Chiari - thank you so much!!!  Our pain doctor (so wonderful!) has walked us through to a colleague who is actually the head of neurosurgery.  Saw her last week and she's referring us for some work up by one of her neurologists, but everything is moving at a snails pace, it seems anyway.  Having a spinal cord that is that tight to trigger all of those symptoms is not good and we needed help months ago.  We are so worried that there will be lasting damage to her while everyone is taking their time or as they say "following protocol".   Oh, and if anyone knows of a good neurosurgeon with a solid knowledge of EDS and craniocervical instability in California, I'd love to have his/her name!  Thanks all!!!

[corina]

Thanks for letting us know! So sorry about the waiting game, I've often felt very impatient awaiting specialist's answers thinking that I have a life to live too and I don't want to waste it waiting! Hope things will speed up soon!