Posted 3/4/2014 7:00 PM (GMT -6)
March 4th - Tuesday - Update - Lot's going on past 24 hours
Started the day going to PT. Did manage to get through 2 of my 3 normal routines, with some effort, and a lot of determination on my end.
This was followed by an one hour massage. She worked on my lower back, and to my amazement, was able to draw out most of the pain out of my lower back. She uses some ultra-light technique, you can barely even feel her hands, and you never feel any pressure per say. Starting to be convinced its a good thing. When she was done, I had virtually no pain in my back, and surprised her by standing up straight after I got off the table. She had never seen me do that before. Unfortunately, the pain had all returned in about an hours time, but it was good while it lasted. I will now be getting 2 per month, instead of 1.
The Neuro Visit
Expected it to be a bust, to be honest. He surprised me. We talked for nearly a full hour without interruption. Based on the spinal results, he is convinced that I am dealing with a non-bone related neurological issue. Actually, he thinks I may be dealing with as many as 3 things, all stemming from the original radiation damage.
For starters, he said no way to any spinal injections. He said they are so hit and miss, and with my complexities, he thinks it would either do nothing, or leave me in worse shape. Especially when I told him I was allergic to all steroids. He looked at the scans, and said the damage shown was very normal for a man my age, and like the spine doctor, he doubted it had anything to do with my current problem. He said it was worth watching in the future, to see if it worsened. But he advised not to do any spinal surgery, as too much risk to making things worse, that couldn't be reversed.
On the pain side, he is close to calling the spread of pain as being CRPS (Complex Regional Pain Syndrome), what started as chronic pain from the radiation damage, has turned into an ugly thing.
He feels now that I am dealing with neurological muscle disorders, but he needs further testing to pin point an exact diagnosis. Said it may be two things going on at the same time.
In the morning, I have to go have some more exotic blood work done. Monday, I see him again, this time to have what he described as a painful repetitive nerve conduction test. He said it won't be pleasant, but it forces selected muscles to fatigue on purpose. He said I may require several muscle biopsies from the affected areas, and they can aid him in his diagnosis. They would be outpatient level.
He too, was deeply concerned about the news about all this stuff showing up in both kidneys. Not an urologist, but he said it looked like more going on then simple cysts.
I was impressed with his deep level of care. He put his arm around me, and assured me, that he would not give up on me until he had answers and solutions, no matter what it took. That gave me a glimmer of hope. Said he admired me for sticking to 3 years plus of rehab, even knowing that we never make any forward progress. Said without it, I would sink even faster. Was also concerned about the rapid weight loss, by his records, I had lost over 15 pounds from my last visit with him 3 weeks ago.
Said he will continue to work closely with my oncologist as a team, until some kind of relief can be found
Just prior to my appointment, got a call from my oncologist's nurse. He is moving my scheduled appointment up by 3 weeks. I see him tomorrow afternoon. He's already seen the kidney scans, and her words, he's "gravely concerned". The appointment with my urologist isn't until the 20th, and she said that might not be fast enough, he may ask me to see an urologist in his building that could see me virtually immediately. Said with my track record of cancers and the extreme risk of secondary cancers, they don't want to take any chances or delays in investigating. We are all hoping it will be benign, of course. I sure don't need to deal with kidney cancer on top of the mix I have now. Was told by the neuro doctor, that if it were cancer, and if a kidney(s) had to be removed, it would be high risk, because of all the radiation damage in the area, and might even result in having my urosotmy stoma being re-done and re-routed, a horrible thing to even contemplate. But we aren't there yet.
He concluded by telling me to do whatever it takes not to get hurt in between all these events, and that if at some point, he can't put it together, he's already suggesting taking the whole mess to MUSC in Charleston for their evaluation. He knows about my bad experience there, but he said that was just that one doctor being an ass.
So I have so much on my mind right now. Almost too much to really weigh through. Fortunately, as busy as I was today, it turned out to be a "normal" CP day, not one of the really terrible ones. for which I am thankful.
Who could have guessed that a simple PC dx in August of 2008 could have turned into all of this mess years later, and there's still no end in sight.
Appreciate all the kindness, good words, advice, and care from my brothers and dear sisters here at HW.