Time for an update --- and here I still sit . . . waiting . . .

At Loma Linda UMC, entire board of vascular surgeons got together and went over my case; decided that no one there could handle the case and that I needed to see Dr. Ballard (gee, that name sounds familiar, huh?) - was already referred to him once and later denied by insurance.

Insurance decides "no" AGAIN to try to stay in-network and sends me to a great vascular surgeon at UCI. I even call before I go so as not to waste my gas getting there only to find out he too knows nothing about TOS. His nurse says, "Oh yeah, he handles TOS cases all the time." So I drive for 2 hours to get there, do his complete eval (including students and residents before seeing the real doctor). Dr. pretty much blows off my symptoms because my arm's not falling off yet and tells me he only does surgery for obvious cases with blood clots forming in the arm/fingers and immediate circulatory compromise. To my surprise, he mentions a different surgeon (but still one I've heard of), Dr. Gelabert at UCLA. That's a relief as I already know he really DOES handle a lot of TOS cases - and well, too! Oh, yeah, but there's a problem - AETNA!

UCI Dr. promises to help out with insurance by talking to them on the phone, writing letters, or whatever he needs to do to get me to UCLA for an evaluation (and testing 'cause he's not even convinced I have TOS, despite all the neurogenic symptoms, loss of pulse at MANY positions, bulging venous collaterals getting bigger every day (and now appearing on the right too), disappearing venous collaterals (and pulse loss, of course) with abducted arm (suddenly reappearing when arm is put down).) All I can think of as I'm driving the 2 HOURS home from UCI is about handling the next 6 months while I battle the insurance company again. All I can say is, if I end up losing a limb or "throwing" a blood clot, they WILL take care of my kids!

So, that was - what? - 3 or 4 weeks ago. After giving up on bothering my PCP referral gal (who has been saintly and put up with me since last April already), I've resigned to sitting and waiting for them to get their *!#(* together, figuring out ways to deal with the pain and the lack of circulation, and pray that the blood keeps flowing!

To top everything off, I can feel my pulse in a spot above my collarbone now - don't think that's normal! UCI Dr. said there's no hurry because he didn't see a subclavian aneurysm on my angio (that was done in October!!!). By the way, I've never had an ultrasound.

Yesterday morning I woke up and could count my pulse just by looking at the clock because I could feel it in my head - without using my hands! On several other occasions, I've been able to do the same but by the pulse in my swollen hand(s). Hey, I guess I could look on the bright side - most people (except here, of course) don't have that talent, right?

It's so much easier to assume (or pretend, or whatever) that it's not fixable or operable and that I just have to learn to live with it - and forget about getting a real doctor to tell me so! I guess I better seriously look at some better methods of pain relief than the temporary medications I've been using just to "get me through".

Thanks for listening - you guys are awesome!