Pain Man appointment

Pain Man walked into the exam room and just went, "What the heck happened?"

I sighed and just said I had no idea. He went ahead and did what Urgent Care and the hospital never thought to--he actually did an exam. I leaned against the wall in a push-up stance, back and forth a couple times as he watched my shoulder blades and spine.

After he had me turn back around, he raised a finger to say something, then stopped and said, "You have a lot of WEIRD stuff."

I gave an exasperated laugh and asked what else was new?

He said he knew what the problem was, and touched the exact spot near my shoulder blade that feels like it has the knife stuck in it. That verified that!

I damaged my left Long Thoracic Nerve. Typically those who do this are young healthy people who join the military and end up frequently wearing heavy packs on their back. The few others who get this injury are those with Ehlers-Danlos or other connective tissue disease.

Pain Man also said there is still the possibility that there is damage from the artery surgery (arterial Thoracic Outlet). Internal scar tissue complications apparently begin after any surgery at the 2 1/2 to 3 month mark; I just reached 2 1/2 months. It can be verified with EMG but not until at least 4 months post-op, so there is no use having it now since it would be inaccurate, not to mention it's a painful test having needles jammed in a couple dozen areas around the body.

He prescribed a medication that has been recommended the last few years. I have refused it consistently, as many people have an issue with the common side effect of weight gain. As a recovering anorexic this is a huge deal for me. But with so many complications going on, I know there is simply no way to avoid it any more. I need the med. I will slowly titrate up because of the multitude of side effects commonly experienced, and will end up at 1800 mg a day after a couple weeks, a rather hefty dosage.

I took 1/2 of a pill (300 mg for the night) and in the first hour I experienced 4 or 5 heavy-duty waves of dizziness.

It may help me sleep more than 2-3 hours a night, as is my average.

Fingers crossed.

(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.