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!