realizations and questions

 I am slowly realizing that the pain I am dealing with these days, for many months now, and in some cases years, is a result of the reconstruction surgery I had done three years ago. In my physical therapy we are now addressing my knee pain on the same side as my thigh pain, on the same side where the NF was. You see, at the NF surgery they took out a large portion of skin and fascia, and some muscle in my lower belly and upper thigh. This we knew. Then they put a skin graft over the whole area to cover it up again because the skin and fascia was gone. 

At the reconstruction surgery I had in NY three years ago, the surgeon removed the skin graft (and some of the mesh that was under it) and pulled together the healthy skin from the upper thigh and lower belly, making a large scar in the fold of my leg area by my lower left abdomen. The scar was a line instead of a skin graft. This pulled the leg skin, and part of a muscle that the surgeon moved, up toward the belly to meet the healthy skin from the belly. He literally took out the "patch" (graft), and pulled the skin together to cover the hole.

At the time, it helped tremendously. I was out of pain for a few years. I think it was the taking of the mesh that helped my pain, but taking away the graft also solved some problems. But, what I am suffering from now in my thigh and my knee is a result of pulling everything upward and sewing it together that way. My thigh is hurting around the joint and the scar, but manipulating the scar and fascia (very very painful at PT) seems to be helping a little. My knee has also gotten messed up by this pulling upward of the skin and fascia. It hurts every time I go up or down stairs (which is a lot if you know my house), or get up from sitting.

The physical therapist is addressing this, but we are not sure if we can alleviate all the pain. We have succeeded in alleviating some of the hip pain, which I am thankful for, but the knee is pretty messed up, and it has been so for a few years, so we are not sure if we can correct that.

Meanwhile I am still needing to jump through hoops to try to get this MRI of my abdomen, pelvis, and thigh. It is actually three MRI's. I went to see a random surgeon on Friday, and he said I am not talking to the right specialty, I need a plastic surgeon to deal with soft tissue problems. He wouldn't re-write the MRI recommendation that I have from my New York doctor (who himself is a plastic surgeon). 

I tried to get an appointment with a plastic surgeon for this purpose, and the appointments are way into October before anything is available. So today I got an "urgent" referral for a plastic surgeon, which I was told is what I need in order to get a sooner appointment. If I find out this week that it won't be early enough, I'll find a plastic surgeon privately and go through the private insurance. Mind you, this is all to *rewrite* a recommendation for an MRI, which I technically have already from my New York surgeon. The appointments for the MRI's are supposedly in August. At some point I may just throw up my arms and not fight for the MRI anymore. I mean, it will just point to more surgery if I send it to my NY doctor, right? Is that the right move? He got me out of pain once, can he do it again? But will I pay for that surgery in pain later on as well?

Being in pain is depressing. It's getting to me. Over Shabbat I walked to synagogue (shul), then to a friend not too far away, but farther than my home, then back home. We had a lovely lunch with very close friends, and that was so good for me. But the walking, and going up their three flights of stairs wasn't good for me. I am in a lot of pain today, and today I also had PT, which often puts me back in strong pain, if only temporarily.

But really, what can be done? The PT is helping for the thigh pain but not the knee pain (yet?), which we just started to address. I have to keep the faith that it will help me with my knee too. But is getting the MRI a necessary goal? I am needing to jump through hoops to get the insurance to pay for it, and when I send it to my NY doctor he'll devise a surgical plan I'm almost sure. Knowing what I know now about the other prices for surgery to the body, is that my goal? Yet *another* surgery (to date there has been 14)? But maybe it can get me out of pain like the last one did, although we see it was temporary, but two and a half years pain free is something, not nothing. You see my dilemma? It's complicated. I don't want to wind up in a wheelchair, that's my biggest fear, along with having constant pain.
I pray for answers.
(CT scan of lower abdomen and pelvis tomorrow)