Waiting and spines

I should be hearing back from Dallas any day now. They have been really on top of things but I'm trying to not get my hopes up because I know that doesn't mean they are going to be able to treat me.

My spine in its entirety is wreaking havoc since last night. Around 8:15 I had not had dinner yet and knew I should. I went to the kitchen 3 times and looked in the fridge and pantry but thought to myself, "I can't. I CAN'T." By 8:30 I was in bed. I've been sleeping off and on though from the pain radiating outward from my thoracic spine, grabbing hold of my lungs making it hurt to breathe.

(Dallas) We have a problem

Texas called this morning. The vascular surgeon in Dallas was looking at some records I took to the local cardiothoracic surgeon, thinking it might help him. They were just some tests I had done during the month I was in the hospital after the couple of resuscitations following the brain surgery in 2005 that went really wrong with the codes.

He was reviewing the 2005 imaging and apparently saw right off the bat that there was an arterial problem back then.

Nice call. Wish they would have spotted that back then. Guess NY was right last week when they said this would explain why things have continued to worsen neurologically despite all the surgeries, and that it changes the structure of the neurological system.

NY is faxing some paperwork to Dallas today after this development.

So for now I wait again but not as anxious. I know everyone is working on this and not just sitting around. I'm trying to just relax. I've been up since 3 and I'm finally having some breakfast now that it's 10. And thanks to EDS I dislocated the right side of my jaw in the process.

Gotta love Ehlers-Danlos.