Had the meeting with the spine doctor. He spent no more than 3-4 minute with me. Every time I tried to ask a question, he cut me off cold. Told me to wait in the room. 20 minutes later, his nurse came in, I cornered her, let her know I wasn't happy. So most of this update is what I got from her.
No brain lesions. Already knew that from the first brain MRI. Asked why he had to do another one, oh, he just wanted one of his own????
Two areas in my lower back show evidence of narrowing and possibly pinching some nerves, but not nerves that would effect my hips and legs giving out. Normal stuff for someone my age, not really related to my real problems.
He wants to try to steroid injections (different types) into my back to see if either helps. Told him I was very allergic to steroids (stated in my medical records). He got miffed about that. He said they would either do nothing for pain relief (if nerves badly damaged by radiation), give short relief (1-4 hours), or longer relief (1-2 weeks best).
He said surgery could relieve some of the back pain, but thinks the hip/leg issue is a neurological issue triggered by the radiation damage, so take that up with the neurologist tomorrow.
Oh, by the way, he says, you either have unusually large cysts in your kidneys, or they are tumors. You need to have that checked out by your urologist. Nurse is going to arrange that part.
Will take several days to get approval for spine injections, so not sure if I will or won't. He said he can't do surgery without the injections, because they show him how damaged the nerves are, and whether surgery would help or hurt. If injections don't work, and if he didn't think surgery would help, then I would have to live with the back pain. Yeah, great solution.
So I left angry and upset. He doesn't know what's going on, despite all those scans and tests No hint at any hope of improvement. So now I have to hope and pray the neurologist will get back in gear on his end, and not simply say, I don't know, I have ran out of things to test.
The spine doctor did mention my severe chronic fatigue, and he said that spine doctors refer to that as the "fourth cancer", because the CFS does so much damage to the body, and can mock cancer damage, but there's nothing you can do about it but endure. Like I have for 14 years already with no improvement.
Back home, severe pain, despite all my meds. Going to try to contact my oncologist, again, to see if he can move up my late March appointment to now, and see if he can up or change some of my pain meds.
If all else fails with this, going to see if I can see a VA doctor about some of these issues. The good doctor reminded me that I present a very troublesome and complex case to any doctor, because each problem aggravates the next problem, and so forth. Kind of a catch 22.
So for now, I continue to suffer, with no clear path and without a more specific diagnosis. Will let you know what the neurologist says tomorrow after that visit. Not real hopeful at the moment.
David
Post Edited (Purgatory) : 3/10/2014 7:36:38 PM (GMT-6)