I am so stressed out and lost.

[Archeress]

Ok I had a bunch of symptoms swallowing difficulty, numbness, neurological pains, burning... I'm sure everyone here knows the drill. I went to the er 4 times thinking I was dying from meningitis to ms. The scariest was the heart palpitations and trouble breathing. They found a chiari malformation of course on th 4th er visit today. They want me to operate, I found a neurosurgeon...

BUT... I have suspected having EDS since 2007 for myself - joints popping and hypermobile...somewhat easy bruising and some excess eyelid skin. thin corneas, and seeing my veins everywhere like a roadmap. I was laughed at by a rhuemetologist and gave up after my first try to get anywhere because it is so hard and I am SO TIRED.

Ok so recently I found out I have scoliosis that has gotten worse, nobody will tell me anything yet. Today my MRI shows straight cervical spine - I look it up and these are other terms for kyphosis so I have kyphoscoliosis now?

I don't know what to do but when I get fixed I want to be fixed right. I am sorry to sound blunt I am just becoming rather tired of things and exhausted. So I am concerned they won't find out about my EDS and maybe I have a tethered cord and need some of my spine fused?

What do I do? I'm going to pull my hair out and that is the only thing I like about my body right now. My insurance ***** because I am on medicaid (disabled) and I am having trouble... we are even thinking of moving my whole family to Maryland - but they seem to think I should get decompression right away because I have been going blind and deaf intermittently and breathing problems. Wearing a neck brace takes most symptoms away.

I'm really scared and we are on our own here with two small children. It is really rough. I stay up all night with anxiety. Thanks in advance for reading this!

[selmaS]

  Hi...not sure where u r or if the Drs u r seeing are true Chiari specialists....
since the neck brace helps u may have instability and that can be causing more issues then the Chiari so u deff need a Dr that knows the relationship btwn Chiari and EDS.

In MD there is the NIH clinical studies for Chiari and the Dr that runs them well known for his work with Chiari Dr Heiss I believe, not sure I got the spelling right....

And then there is a Dr Henderson in MD and Dr Rosner on NC....

Did they do a flow study on u...a CINE MRI?

[Archeress]

No flow study, my pcp is incompetent even though we provided docs on the issues. I'm in Kentucky right now.

[selmaS]

  It is also possible that ur PCP can not order that test...sometimes the ins limits what the Drs can do and the order they r done in,.....

If surgery was suggested who suggested it? If u have  A NS  wanting to do surgery, then that Dr should order the testing......