Tuesday, January 20, 2009

medical update, first unofficial consult about surgery

I went to both Dorits within 12 hours of each other between last evening, and this morning. Last night was Dorit the physiotherapist/lymphatic treatment lady. Love her. As I knew, my leg was totally full and swollen. She tsk-tsk'd me for not taking care of it sooner. ...The war. Nothing more has to be said. She drained the fluid, directing it to lymph systems that work; my other thigh, armpit. Then the reflexology. I left there feeling so light and indeed healthier. I gotta keep that up weekly.

This morning's Dorit was my scar management lady who is an occupational therapist. Those appointments are once every 6 weeks, and always at Soroka. There was no parking, because of the war. The hospital parking lots were packed to the gills- I parked on the sidewalk along with many others.

I had many questions regarding my pressure garments, the condition of my graft (gapey), time lines, and reconstructive surgery. She said that as far as she is concerned, my pressure garment, at this point, is just for comfort. There is still a 2 inch x 3 inch corner that is still active, which I knew. It hurts and itches much of the day. That is where the graft didn't take so well. But the rest of it (about 13 inches x 10 inches) is fine. She suggested that I can keep a square of silicone on the difficult area (which Robert affectionately calls the "Upper West Side"), and keep the pressure garment on to keep that in place. But in her opinion, I can stop wearing it. But then I explained to her that can't stop wearing it. I need it to fill in the gap with the pillow, and it is near impossible to wear anything, besides a robe or sweatpants, without the garment on. Then we talked about reconstruction.

She said it is a good time for it as far as the condition of the area is concerned. She asked me what my expectations are. I told her about a book I read which was given to me by my brother-in-law M. It is called "How Doctors Think" by Jerome Groopman, M.D. He says very plainly regarding any surgery that if you get 80% of 'perfection', you've gotten a good outcome. This is not only WRT plastic surgery, of course, he means all surgeries. They are invasive by nature, and we, as a society, must stop expecting from our highly trained specialists 100% of the desired outcome.

In analyzing my post-NF situation, I feel I function now with 50% or 60% on a good day. I do want to go for that 80%, but I know I can't expect a miracle. As this author says,"my [his] banged up hand was a 1952 Studebaker, and only so much could be done in the shop. It would never emerge as a brand-new Lexus." But, he does feel that he got his 80%, and is satisfied with it. He still has pain and swelling with certain tasks, which he tries to avoid or compensate for, but it is livable. That's what I expect. In my case, the numb problems are irreparable, as well as the lymph problems, and the fact that my body went through something big will always be apparent. But, I can expect symmetry, and a body that can comfortably wear clothes without a tight elastic garment or a prosthetic pillow. As far as pain or discomfort in the long run, that is the unknown here. I may need another type of pressure garment after the surgery to help the new scar heal. That would, hopefully, be temporary, if the expected outcome is reached. It'll never be perfect. It'll always be "post NF". But it can be better, and I want that.

The dangers still creep into my conscious mind, of course. It'd be unnatural if they didn't. My biggest fear (OK, it's a second, really, to the possibility of catching another mega bug) is that it would fail. That the skin that was stretched and brought together, from the thigh to the mid-stomach, will not hold, and bust open. That is a *Really Bad* scenario. Then I am left with long-term open wound care and no option of another graft to close it. Very very very scary.

From what I understand there is process of skin stretching for weeks before the surgery. I'd have to oil skin and blow up balloons that will be surgically inserted into the areas that need stretching. Then after that, the repair can be done. So it's really two procedures. But, that is what I need to consult about with the two plastic surgeons I have consulted with in the past about this surgery.

Hmm.... go for 80% of the original me, or go with the caution because of the real risks involved. I will go for consultations with the best of the best, of course, but I know I want to have faith and go for the 80% of original me. It's part of this whole healing process, and I feel it is the natural next step in my faith.
In the end, faith makes us grow, not caution, right?

1 comment :

  1. one of the questions you might want to ask is what is the success rate of these procedures.

    Good luck!! You know that I wish you only good things!!