Posted 5/14/2014 9:54 PM (GMT -5)
Dear Barb,
Thanks so much for writing ,and giving me an update on you. I knew you were due for some more radiation in your life, just what you needed.
Yes, it can be an endless circle. The pain makes the CFS worse, and the CFS elevates the pain. It's a very vicious circle like you say. People often don't understand, that with CFS, sometimes all the sleep in the world doesn't keep you from feeling totally empty and wiped out the moment one's eyes are opened. It's like that on most days for me.
Hugs back, pain buddy, hoping as always, for any kind of relief or good news for you especially. You have been through way too much for one person.
David
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UPDATE 5/14
Spent 2 hours at the VA Dental yesterday, both with my assigned dentist, and the specialist who deals with patients with radiation damage (didn't know there was even that kind of specialty dentist).
After much delay (weeks), their vertical panoramic x-ray machine was up and running, and they took multiple sets of 360 degree, 3-D images. Was amazing to watch, though kind of hard for me to stand up unassisted that long in the machine.
Horrified to see how much worse my remaining teeth looked, no wonder I never smile or open my mouth.
The specialist had asked me not to shave for a couple of days first. Sounds like an odd request, but makes perfect sense. He was studying my facial hair, and could tell from looking, that most of the radiation was done on the left side, and not the right, and pointed to places in the hair pattern where he said more scattering was done, then in other places.
As he projected from my first visit, I indeed have serious radiation damage right down to bone level in my lower left jawbone. Moderate damage in the upper left bones.
Said its a game changer, and makes any dental work high risk. He said the safest thing to do, was to do nothing, and just let the teeth crumble apart one by one, but of course, he knew that wouldn't be a solution.
One plan involves 2-3 surgeries, to prepare my mouth for false teeth. But after seeing the x-rays, he said he, my dentist, and the higher experts at the VA hospital would going to consult together, and get back to me by phone. He thinking now, that one major operation might be the safer way to go. He said it would involve being in the hospital full OR, not the dental surgeon's office, and it might mean having to say one night in the hospital.
Some of his concerns are having open sockets that won't ever heal up correctly, long term bleeding, high infection risk, and worse yet, major jaw bone damage that he said could lead to jaw bone reconstructive surgery if anything went wrong. Said if that ever happened, its difficult to correct, and leads to very painful and long term recoveries.
You have to admit, can't I ever have a normal fix for anything? lol. Everything has to be rare, unique, and unusual.
He did remark, that the 70 gys of radiation, old-school style, that I had back in 2000, was typical of the kind of wide spread damage that radiation can do in such a confined area, and just how much scattering of radiation took place in the non-IMRT, IMGT days of radiating people.
Once they tell me the game plan, will let you know what has been decided.