Monday, November 22, 2010

medical reality

We had a great time with guests from out-of-town this weekend. We went out to dinner Thursday evening (Indian food!), and had a great shabbat together. We always do when we are together.

But one conversation with K (guest) was about the pain I have. He was upset to see what is going on with that. "...seeing how much pain you were in was so hard for me. I don't want to believe that's what you have to look forward to for the rest of your life."

To see it from an outsider's perspective is eye-opening for me, too. I mean, really, is this *it*? What will make it better? I wait day in and day out for the pain (mostly from the recent surgery) to get better, and it seems to have reached a plateau. I take either Optalgin, Voltaren, or sometimes Percocet if I feel desperate enough to endure the slight nausea.

In the meantime I cannot make any decisions about moving forward. I just keep surveying the damages.

Damn. The mesh in my gut really hurts still. I even think it's gotten a bit worse... maybe because of the laboring woman leaning into me? Nah. That couldn't change things so much. Is the mesh failing? I'd have no way to know that unless my guts start to hang out again.

A few doctors have told me that doing the plastic surgery, the actual reconstruction, would be the answer to the pain problems. Really? Can you guarantee that? No, of course not. What if it hurts even more after that? And what happens if the PVNS, (the ghost of which I feel every day) returns; remember that 50% chance? *More* surgery into the hip joint? Chemo (Gleevec) to try to destroy the tumor? After I've had multiple complicated surgeries there?
We are talking of possible disaster. I am no longer afraid of NF's death threat. I am worried about more permanent damage, and a lifetime of pain.
But I already am living a life of pain. DAMN.

One of the Ichilov surgeons told me that my nerve pain would never go away until I did the plastic surgery. And again, my most recent surgeon said something similar regarding this pain I have from the mesh. Filling in the gapey area with fatty tissue and pulling the outer skin together may eventually releive the pain from the mesh. DAMN. Did I say that already??? I am so frustrated.

More surgery and roller coaster recovery time hoping for the situation to improve? I can't get to that conclusion. I am too traumatized to think that way.

Pain clinic: Soroka here in Be'er Sheva gave me the earliest possible appointment... September 2011. Yup.
I could get another appointment at another hospital about an hour drive away; they have appointments available much earlier. But then I am committed to treatments and follow-ups there, a commute away. I'd rather be here, of course. And again, what pain are we treating? The hip joint PVNS? The bursitis? The mesh surgery? The neruopathic pain in gapey and on my skin (the most painful is on the skin. It gets touched, and I practically yell)? Just numb up my left side from the waist down to the knee, and that should cover it. Actually, the thought of that sounds relieving, actually.

The acupuncture seems like a bust. I wind up with more pain afterward.

Please, I need input here. I know you guys don't have the answers for me, but do you have any ideas? Any real doctors with me reading along? You can write anonymously. I am looking for insights. I am too young to give up and take this situation as The Rest Of My Life. Help me see things clearly, if you can.

1 comment :

  1. hi Sare,
    thinking of you always

    hmmmm.... is it possible to numb up your side in those areas? Didn't you look into epidural pain blocks at one point? My bro-in-law who has serious back pain has a block that helps him tremendously.

    xxxooo gotta get back to work