Between the now and the not yet ~ knowing and yet unsure ~ leaning forward and being held back by an indescribable force. Me, shaking my head (carefully, I might add as the brain tail doesn't like to be all shook up!)How in the world did I get here again????
My head is spinning ~ true story ~ as I try to re-trace my steps ~ which doctor do I need to follow up with next? Did I already miss my deadline for my level 2 appeal? Is it time to step up to the plate and pay a visit to the Dept of Insurance? Feeling like I am losing touch with reality ~ so for my sanity ~ let me check the facts:
1. I have a Chiari Malformation herniated 11mm beyond where it should be
2. My insurance company won't allow out of network coverage
3. Chiari is a progressive condition and I am fearful of nerve damage while I wait for surgery
4. I officially have FIVE neurosurgeons ~ only one of them understands Chiari and the associated conditions completely and he's the one that I am not approved to see. He's the best of the best ~ the choice is clear ~ I just can't get there from here! 
I have hit a huge roadblock ~ again ~ having trouble finding someone to do a test for Ehlers Danlos Syndrome ~ which, if proven ~ is the golden ticket to TCI. Today ~ I'm frustrated with the system ~ not feeling like I have any faith left ~ is there any clear way out of this???
1 comment:
Hi! I have Ehlers-Danlos plugged into Google and get email alerts anytime it pops up on the web--that's how I found you. :)
I have the hypermobility type of EDS (HEDS) and was diagnosed 18 months ago. I am in my 30s. I do not have Chiari as far as I know but I do know many EDSers who do have it--very common co-occurrence. EDS is debilitating enough on its own that I can't imagine adding something like Chiari to it. My heart goes out to you.
First, have you been to www.ednf.org? The national foundation is a wealth of information on EDS. The message boards have also been a haven of support and help.
Second, in your quest for an EDS diagnosis a Rheumy doc is a good choice but some don't know enough about EDS. A Geneticist would be another good choice if your primary can refer you to one. The EDNF has a list of MDs by State so you might check that out for your area to see if one has been recommended. I was diagnosed by my primary care doc who has a specialty in Sports Medicine. Since HEDS does not have a known gene associated with it yet, genetic testing doesn't help so it is up to a clinical exam that includes a physical, personal history, family history, and certain criteria. If you have anyone in your family who might also have undiagnosed EDS, gather their information to help you get a diagnosis (pictures, lists of surgeries, cause of death, heart conditions, stretchiness -skin-joints-, and other symptoms).
Just thought it might help to have input from someone who has just recently gone through the diagnostics.
Also, I have Blue Cross Plus, which allows me to see people out of network for a cost. It is a combo of the HMO and the PPO. It has work ok for some things related to my EDS, but it has also refused some of my referrals. Depends on how hard you want to fight for something too.
Wishing you well and hope to see you on the EDNF message boards! We are all warmly supportive of each other and there are lots of people there with both conditions!
~elise
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