Thought my other thread was getting way too long, easier to start a new one.
Today's news was a mixed bag, but not totally unexpected.
My MRI's were read by one of the area's best, and he told my doctor, 1 - no sign of cancer or mets in the hips or outer prostate bed area (none were expected to be found, as just had a full body PET scan in Aug), 2- he saw nothing unusual from an orthopedic perspective, nothing obvious with the bone structure, no hairline cracks, no arthritis, no spurs, etc). He said taking the images from a different angle (this is what the new doctor wanted to try), did not shed any light on why my hips are giving out. Of course, its always good news to have an all clear on mets.
My doctor feels what we are seeing, is just a furthering of major nerve damage, which was triggered by the faulty SRT back at the end of 2009. He said it's most unusual for the damage to so wide spread and to be continuing to worsen. He always equates nerves and neurological matters to electrical and wiring. He said with the hips, the brain is sending the wrong signal at the wrong time, like something is out of sync, or another way, he said it was like I was having random "shorting" out in my wires (nerves).
Even though he knows I have had some bad episode with neurologists in the past (prior to PC), he wants me to see a top rated neurologist, and start at square one. He asked me to erase all the negative thoughts I had from the past. They started the process of sending over all my scans (5 years worth), tons of medical records, and he is going to have a lengthy phone consultation with the new doctor, bringing him up to speed. He said once again, that I have an extremely disturbing PC case, though one that is unique in many ways, with no easy answers. But, he doesn't want to give up, or for me give up, he's convinced, we need to keep trying, and some of the neurological matters - is a case of process of elimination.
I never had so much blood drawn at one time. He has ordered a new round of extensive blood work, beyond the normal full panel stuff, some were for tests I have never heard of before. They took 9 tubes. He said aside from the normal understanding of all the radiation caused damage, there may be something serious underlying what is related to my PC. He wants everything else to be eliminated as even being remote possibilities.
He only learned today, that my older brother is a severe epileptic, and said some of the neuro symptoms could be masking that. He was aware that there were suspicions of MS in the past, and wants that re-visited, and hopefully quickly removed from the list. Said its going to take a lot of determination, and more patience, to continue to sort through what's turning out to be a long list of quirky issues, aside from the known chronic pain issues.
The first appointment with the neurologist should be set by the end of the week, hopefully I will be seen soon.
I discussed the C11/Acetate PET scans that Sonny had recently, and he was aware of them, but said that we would have to go out of state for that. So he's going to research that, as I am scheduled to have another PET scan early next year. (Next year is a month away now, so it doesn't sound that far away any more).
His nurse quickly had straightened out all the paperwork nonsense concerning the rolling walker I need for my protection in the meanwhile. As I suspected, none of it was on my doctor's office end. The medical supply company kept screwing around. I went there today, was fitted for it, and took it home with me. It's a very deluxe model, full featured, and will give me some security walking around. In the end, I didn't have to pay a cent, Medicare paid the bulk of it, and the medical supply company ate the difference for my troubles.
My doctor felt it was imperative that I use it when I am out and about, he said in my condition, any bone breakage could turn out to be a major setback. When I am in places where its not appropriate to use it, I will still continue to carry and use my cane. I just have to get over some pride issues, just can't believe its come down to this, but I am more fearful of breaking my hips, then worrying about my pride.
Not counting nurse time and blood work, we spend a full 50 minutes talking. Like I said at the start, neither of us were all that surprised about the MRI results, but glad on one hand, but disappointed that something obvious wasn't glaring that could have helped changed any treatment methods.
What makes all this more complicated, is that I do have a long adult track record, of on again, off again, neurological quirks that have never been diagnosed or answered, let alone treated. This include periods of extreme burning pains - always located on one side of the body only - sometimes just one side of my face or head, or just along one arm, or just one leg, they call them hemispherical pains. Feels just like a severe sunburn, but of course, no reddening of the skin, no bumps or rash, no visible sign, but extremely painful. These have been going on for nearly 40 years at different periods of my life. More recently, and the doctor was very concerned, was the shaking I have been developing in my left hand (I am very left handed and "left sided", like tremors. Started a month ago, very random. Or in another version, left hand only, my middle finger will go completely numb for a few minutes, then the feeling pops right back in like nothing happened, or still another version, all the hair on my middle finger will be standing at attention as I feel some kind of tingling. No, I don't have any known cardiac issues, last time my heart was monitored, just a few months ago, was told by the cardiologist, that my heart acted like that of a healthy 40 year old guy.
We mutually agreed to leave the pain meds as currently prescribed, don't want to make any changes to the mix until at least the new neurologist has a chance to run tests. I am ok with that, as I recently made the switch from Lortabs after 3 1/2 years to Norco. At least the Norco hits my system a bit faster than the Lortab.
So the "fight" or better worded, the "quest" continues onward. My doctor showed his normal deep concern for my issues, and while it was be easier for him to dump me off to another doctor, I think he really genuinely cares about me, and he doesn't mind the extra grunt work on his, the investigative work, the research, etc.
So that's it basically. I am still sore from the weird position I have to be bound into yesterday when the MRI's were ran. Knew it would end up hurting me, and the doctor even apologized for the extra pain, but they had to get good scans in, or there would have been no point. I understand and accept there are times in our treatments and procedures, that you have to endure certain things to get results. After all I have endured for over 5 years, to me, its just a minor annoyance answered to the list.
And to my brother Vets here, he assured me, that despite having VA medical care on top of the Medicare, I will always have the choice to retain him as my lead oncologist. He's never been concerned about the money part with me, never once been talked about, and after 2 1/2 years with him, never even been asked for a co-pay.
I still feel in safe hands with this doctor. There are plenty of people with quirky and difficult medical situations where there aren't always easy or quick answers. I accept that too, just happy we are moving onward, seeking reasons, answers, and hopefully at some point, new or better treatments to relieve me of some of this additional pain and distress.
David