EDS and Chiari??

Hi there,
       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!

Trisha

[selmaS]

  Hi and welcome to the EDS forum.

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.

[Trisha222]

Thank you so much for writing back, it is really nice to know I am not losing my mind. It makes me feel a lot better :) I will definitely talk to my dr Wed morning about getting an MRI.

[selmaS]

  No worries...good luck with the Dr and if u do get a Dx of Chiari u can also post in the Chiari forum here on MedHelp- http://www.medhelp.org/forums/Chiari-Malformation/show/257?controller=forums&action=show&id=257&camp=msc

[Trisha222]

As of 15 min ago my headache got worse on my right side above my eye and now my right eye is drooping is this normal for Chiari ??

[selmaS]

  Yes it is...I had that while at my Chiari Drs and the nurse made a comment....I said my face and eyes feel odd and numb and she said they r also drooping....

Some have experienced more of a Bells Palsey type of droop too....

[Trisha222]

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

[selmaS]

  Good Luck!!

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.

[Trisha222]

Perfect! I was wondering how to get those, thank you for being there for me it means the world.

[selmaS]

  No worries : )

Please let me know how it goes <3

[Trisha222]

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.

[selmaS]

  Yeah that machine is loud...I was in once for almost 3 hrs....not fun, but a way to get answers.

My fingers r crossed for u too : )