Today's neuro's visit was both depressing and disappointing. My worse fears were realize. At the end of the day, the doctor can not diagnose specifically what is wrong with me - with the muscle weakness, hips/legs giving out, and other bizarre neurological symptoms that have been going on.
He concludes that my body is permanently and severely damaged by radiation and surgical damage. That there is little hope, if any, that there will ever be any improvement or healing, now or in the future. He said I will more likely have to suffer the rest of my life in severe chronic pain, and in need of narcotic meds for ever.
He said he has seen damage like this before, and its the results of multiple surgeries below my waste, in conjunction with the severe radiation damage that happened. Even the timing of events had to do with the severity. When I had the Urostomy surgery in 2010, one year after the radiation damage was done, the surgeon had to cut into areas that were already heavily nerve damaged and scarred from the radiation. The surgery only made things worse, from a healing perspective. It only worsened the nerve damage, and effectively keeps it from ever healing or restoring itself.
He mentioned too, that as the prostate cancer continues to grow and progress, its likely that there will be more damage and more chronic pain over time. He said to continue physical therapy, probably for life, as we can't afford to worsen my general health with any more set backs and regression than possible. Even though no forward progress has been made in over 3 years of attending faithfully.
Not totally surprised. He will be summarizing his findings and sending them to my oncologist. However, I now feel its a hopeless situation, knowing that I will always suffer in so much pain and fatigue the remainder of my life. Meanwhile, my cancer is still on the go and on the grow, and its only a question of time till it presents its ugly face in the form of mets.
He still backs my oncologist's strategy, of not doing any advanced treatments at this time, until there is at least some evidence of mets, because he doesn't think I should be burdened with any additional quality of life issues, knowing that I already have a full plate as it is.
He wants to see me every 4 months. He said at some point, as damage increases, or as pain continues to increase, its possible in the future, something might pop up that can be scanned or detected via advanced blood work, but until then, there is no other level of testing available to him.
He said, in neurology, this conclusion is not as rare as one thinks, because there are so many neurological issues that simply can't be scanned or tested, yet they are there in the body, causing pain and havoc regardless.
This July, will mark 4 full years of severe chronic pain for me, and the thought that presently, there is no hope of improvement, and knowing that if anything, it will worsen over time, hardly leaves me in a good mood.
The only other card I have to play, is I have an appointment with the head of Neurology at the VA hospital in Columbia late this month. However, I am not sure they have access to any more testing or scans than this neurologist had. I will have to weigh out any potential benefit in trying the VA.
Thanks, radiation center, for totally screwing up my body and my life. It's so unfair, that all my attempts at malpractice against them ended with zero resolution. This damage could have been avoided. All this, and on top of it, the radiation didn't remotely slow down the PC, just damaged everything in its path.
Will stop before this becomes a rant.