Under the Knife Again

I'm having surgery again next week, my 16th. At least this time it does not involve shaving my head. It does however involve a lot of risk, a big incision, general anesthetic, and around a week in the hospital.

I'm also having my first mammogram and an ultrasound because of what we hope is just a small thing. I'm nervous but not much I can do about it. So, first things first, one day at a time.

13 surgeries and you'd think I could handle anything by now. But here I am at 3:08 am writing this. I couldn't stand writhing in bed in pain any longer. The last 5 1/2 hours of it was enough. It was getting a little ridiculous doing that since the moment I climbed into bed. I'm exhausted, eyelids heavy, but this pain radiating all over my torso and spine is unbelievable.

I don't know what's happening and I'll say it.

I'm afraid.

Ehlers-Danlos strikes again

Well I'm not a whole lot closer to answers. There's a lot of this-and-that so I'm just going to sort of toss it all out there there as best I can from my scattered head.

The mid-spinal issues (below my hardware) is from it taking the brunt of spinal instability. It's safer to leave it as-is than to go back in because of the Ehlers-Danlos.

My testing showed the problems with my hands and arms is not stemming from my spine at all (Tucson thought it was from the above situation but what they put down was apparently so weird NY redid everything b/c they didn't trust the local hospital doctor--neither did my local pain management doctor/neuro) but discovered a problem with the vein/artery in the side of my neck. It is not a neuro issue at all but with me it's caused by the Ehlers-Danlos. It's handled by thoracic surgeons. NY has seen it in a few of their EDS patients; they have never had a patient have the surgery, don't even suggest for most of them to see a thoracic surgeon but said my situation warrants being seen by a surgeon soon.

What was thought to be brain regrowth down into my spine (I'd had that portion of brain removed in AZ) is not regrowth at all but my brain being pushed down into it due to the cyst being so large. This is the first time I have seen it and I guess I wasn't expecting it to be this size, shape, etc. For whatever reason, I was figuring it on being this little bubble or something. Instead it's this tall, long, wide thing and is doing a good job pushing in and down on my brain, particularly the brain stem.

This type of growth is unusual and they aren't really sure why it happened or what's going on. In Tucson I'll do some testing and send it out to NY. If it's not helpful I'll go out there for some more thorough in-patient versions (continuous readings instead of one-timers). We'll see.

That's about it. Thoracic surgeon for nasty bugger going on with artery and nerves. Braces for damage already done. Tests in Tucson to be done and sent out. Possible follow-up test possible in NY. THEN they'll figure out this cyst. The big concern is still they feel there is not a very good chance of success for going in my head again, so they're looking at every possibility here in the hope of finding some answer.

I went out there hoping for some answers and a plan and instead found there's still not a good outlook, and added on another big problem. Not what I was expecting.

I'm glad to be home. My flights were all mixed up again today b/c of weather but boy, there is no place like home, family, and friends--the most important things.

So long old Chiari blog

The entire site where I had my blog is going to shut down. They are switching the blogs to another location entirely and I do not like it whatsoever. Instead of copying and pasting hundreds of posts over to here, I'm basically starting over--no worries though, I have a copy of everything I wrote!

To get things started, here is my last entry from the other site, done yesterday.

Wednesday, May 16, 2007 at 3:03 PM PDT

These were all done this morning.

We are having quite a downpour right now. What a nice change.