I am a 27 yo mom of two and I was diagnosed with EDS recently and it was so nice to finally understand why I was physically falling apart. I have had non-reconstructive TMJ surgery and have severe uterine prolapse for which I am being passed around to specialists to figure out how to handle. I am used to my joints going out everyday and the pain that goes with that but as of 3 weeks ago my neck has been hurting really bad. It started with a lot of pain at the point where my spine meets the scull and crunching grinding sound EVERY time I move my head. Now I am having migraines almost every day, ringing in my ears, nausea, times when I can find my words, dizziness, oh and since this started when I am sneezing and I swallow swallowing causes me to sneeze. Like every-time I swallow I sneeze again. It's new and bizarre. Oh and I have little to no muscle pain in that area just my spine and the pains that shoot elsewhere whenever I move my head, yell, or sneeze amongst other things. I have lots of symptoms but its hard to discern which problem they correspond with. I was also diagnosed with dysautonomia and I have MANY of the symptoms associated with that daily too. I am hoping others can tell me how they knew they had Chiari and how to talk to my dr about it. I feel like such a burden because it feels like every two seconds something is wrong with me :( it's embarrassing, that's why I have waited 3 weeks to see him even though I am in tons of pain. Does this sound like Chiari? Thank you guys for reading this and helping me! It means the world!
I was dx'd with Chiari and it was on my cervical spine MRI and then I have a brain MRI.....
Do u have copies of MRI's of these area's...? Have u had these area's MRI'd?
The symptoms can be from EDS, POTS, MS, lymes and lupus as they all have similar symptoms...so MRI is the best way to get a dx, but not all Drs will inform u of the findings as far too many just do not feel Chiari has Significance,,.
U could have Chiari.,..the symptoms do fit...but u need the MRI and the reports,...going forward always ask for copies of all tests and reports.
I have Chiari and EDS and tethered cord.....if u have more questions...just ask.
Just saw my dr. and I have a MRI of my head and neck tomorrow, and then one with contrast. He is open and understanding and told me all he is checking for which includes Chiari. So I will hopefully get answers soon
When u sign in for the MRI tell them u want copies of the MRI and the report...u may have to sign something as the report takes a few days to prepare, but they should be able to give u a disk with the MRI's on b4 u leave.
Went in for my MRI today they did the c-spine first, then brain w/o contrast, then one with. I have had a super migraine all day and even with ear plugs that machine is loud... Brought tears to my eyes lol I requested copies and will pick them up tomorrow after the report is done too. Crossing my fingers and holding my breath.
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