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.

Dallas

Dallas nurse called to let me know Tucson finally faxed the papers. Dr G is in meetings this afternoon but she is going to let him know they arrived.

I thought the phone call was good of her.

Whew. Ok. Just keep swimming, just keep swimming...

Vascular surgeon in Dallas

I decided to just call the Dallas surgeon instead of sending a fax over the weekend. I spoke with his nurse, who was very kind. She gave me her fax number and asked me to get the records from the local cardiothoracic surgeon. While I made some phone calls back and forth between the upstairs and downstairs portions of the hospital (seems there is going to be difficulty getting the records sent out, seems as how the surgeon here doesn't have his records dictated, he leaves them as handwritten notes), the Dallas nurse talked to the vascular surgeon about the situation.

She called me back and let me know he was expecting them and once read, he will call me back himself and tell me whether or not he thinks he can help. That way, she says, I know whether or not it's worth making a trip.

We'll see.

For now, I'm trying to make arrangements for all of us that are going to be in Phoenix/Tempe for the National Brain Tumor Foundation fund-raising walk on Saturday. I look forward to all of us being together. I'll try to get some pics of all of us.

I finished the first panel in the Babette blanket for my daughter. Of course, it was the biggest square in the blanket at 12 inches. The rest are of varying smaller sizes. I'm glad this one is over. There are only a couple hundred left, haha. But at least the 12 incher is done. it was getting a challenge to handle. The little ones will be so much easier--well, I think. There is a progress bar at the bottom of my blog to keep an eye on the progress. I will post pics along the way, in between progress bar changes.

On another neat note, my blog was approved to be part of the Medical Blogger Patient Code of Ethics. They have a category for medical professionals and another for patients, and do a review of the websites to see if the code of ethics are being followed by the bloggers. I am really happy to be part of this.