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Ehlers-Danlos Syndrome User Group
EDS and Chiari??
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
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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
Tags: EDS, Chiari
11 Comments
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620923_tn?1393294254

  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.
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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.
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620923_tn?1393294254

  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
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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 ??
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620923_tn?1393294254

  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....

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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
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620923_tn?1393294254

  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.
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Perfect! I was wondering how to get those, thank you for being there for me it means the world.
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620923_tn?1393294254

  No worries : )

Please let me know how it goes <3
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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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620923_tn?1393294254

  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 : )
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