Rob, thanks for the good kidney info, will keep that info handy in case it develops in that direction. I wish you well, looks like you had your own severe issues.

Dr. did tell me, you can get by with one kidney perfectly well. My Urostomy makes any thoughts of a kidney removal very complicated, so I sure hopes it doesn't come down to anything that serious.
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Thanks, Diane, slowly recovering from all the extra pain and fatigue from my weekend adventure, today was about a 50% improvement from Monday, hopefully by this weekend, will be back to my "normal" levels, I am hoping. Yesterday was one of my worse days ever, just thankful I am mending from all of that. Hope you are ok.
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Tuesday

Had a great visit with my new VA dental team. Spent 2 1/2 hours with them. First met with a dental nurse, she was sharp. As soon as she found out that I had had neck/throat radiation in the past, she said it was a major deal changer.

Then spent an hour with my assigned dentist. Only problem, was their x-ray super machine has been done for a week, so they were not able to do a panoramic set of x-rays. As soon as the machine is up, suppose to be tomorrow, they will call me by phone to have them done.

After a lengthy tooth by tooth examination, and this was no surprise to me, I do not have a single good tooth left in my mouth. For starters, 8 teeth are split from top to bottom, many others are riddled with cavities, and the rest are badly damaged from the back side. This is not counting all my missing teeth, or ones that have broken to the gum line or below. She said the radiation caused all of this, not improper tooth care, and she said my past 4 years use of opiates had little to do with it.

After she was through, I then spent an hour with the real expert, this dentist has 4 extra years of college, and is an expert with severe dental problems associated with radiation damage. He said it can be dangerous to simply have all the remaining teeth simply extracted and having dentures put into place.

Once he sees the x-rays, he said he will consult with a dental surgeon at the hospital in Columbia, and come up with a plan that will be safe for me. It's very complicated, and will involve 2-4 surgeries to accomplish it.

He said that the 70 gys of radiation I had in 2000, did all the damage. It causes a lot of nerve damage to the teeth, jaw bones, and gums, a combination of vascular damage - to where none of those are getting the proper amount of blood, causing serious level bone damage. Said the worse damage was on my left side, the side that got 50 gys of the 70. Less damage on the right side, which got 20 gys.

Some of the teeth will need to be cut below the gum line, instead of removing them, and then having root canals done to those. Some of the front teeth can be safely extracted. Then, full dentures will be made. He assured me, that in the private practice, would be looking at 10-15k worth of work, but being 100% VA disabled, it won't cost me a cent. Also, he said I would be put under for all of the work, so I didn't need to fear any pain in the process, except for some of the healing process.

He said my own private dental surgeon acted recklessly, in the extractions I had done last year. Even though that surgeon was fully aware of my past radiation issues. Said he could have done some serious harm to me.

All in all, it was a good visit, and I learned things (dental) that I never knew or had even heard of before. He spent a lot of time explaining some pretty complex terminology and procedures, so that I fully understood what he was attempting to do. He also used the time as training for the staff dentist and the nurse. They were all taking furious notes, trying to keep up with him.

Once this is all done, hopefully over the next 2 months, that will be one more major thing I won't have to be concerned about, and gee, I might actually learn to smile again. I was embarrassed to even have them look in my mouth, with all my broken and jagged teeth.

He said he wasn't surprised that I had little pain associated with this, as most of the nerves associated were long destroyed by the radiation years ago. Even when I have a took break apart, as I did a couple of weeks ago, it didn't hurt at all. Bled for a bit, but no pain whatsoever.

Feel I am on the right track with the dental stuff, and happy they had such a specific expert on staff to deal with these complexities.

So far, pretty happy with the quality of care I am getting with my local VA Outpatient Facility. They did tell me, that due to the serious nature of my dental problems, I am on the top of the list for treatment, and should not have any serious waiting periods for this work to be done.

David

David, sounds like a good visit. Why did the "expert" dentist say it was dangerous to have the remaining teeth pulled...just curious. I imagine that in your situation, you have significant bone loss in the jaw that makes implants near impossible, even with bone grafts. And what is an x-ray super machine...never heard of that expression but then again you do love your superlatives (LOL)!

Am glad that you've never had any dental pain...to me, tooth pain is one of the worst pains as it seems to affect the entire body. Anyway, good luck with the dentures. Now, don't forget, after all this is done, you will need to have regular dental check-ups and cleanings especially around those teeth with root canals as you can still get decay in them.

Take care of yourself.

Post Edited (Sephie) : 3/26/2014 5:10:53 AM (GMT-6)

Good luck for your appointment today David!

David -

I'm very glad to hear that you're having a positive experience with the dental facilities that the VA where you are is offering.

Some have complained about the medical service they have received in some VA settings (perhaps rightly for all I know), but it's sounding like you have found one that is a very good place.

That's wonderful!

Thanks, 81. So far, happy with my local VA out patient. Not saying it's perfect. But so far, impressed with quality of doctors and staff, and just as important, being treated fairly and with total respect and honor.
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Kidney Scans all done. Not much to say. But at the end, was told to hold on, because my uro later added scans of my fried bladder. That made me feel good, because there is still a lot of concern about cancer possibly being in my bladder, either now or in the future. Glad he decided to take a look at it.

Suppose to have answers sometime tomorrow. Couldn't get the operator to tell me a thing, except for the pinging noise it was making at random times. She did say they were particular objects that she was honing in on, and taking still shots of them for the radiologist to look at later. Can't read anything into that, other than there were a lot of pings, and probably a two to one ratio of pings on the left kidney.

David

UPDATE - THURSDAY - MARCH 27
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Got the phone call at 0830 this morning from my uro (how dare anyone call me that early while I was sleeping!!!!)

Got the all clear on the kidney scans. Yes, there are lots of common renal cysts in both kidneys, but said nothing that needs any kind of follow up now or in the future. No evidence of "solid" lumps. Said half of any one over age 50 will have renal cysts, shouldn't cause me any problems.

On the bladder, he compared to the last scan, and saw no changes, which is good. Since my bladder took the full blunt of the radiation, said it will still need to be scanned from time to time, as it will always be suspect for a secondary cancer.

So, and I had hoped this would be the case, can scratch off kidney cancer off my list. He said its a silent killer, with few symptoms. Most kidney cancer is found as the result of spinal MRI's like I had done, and that the spine doctor was right for bringing it to our attention, just in case.

Appreciate all the kind thoughts and many prayers the past few weeks. Now its back to the neurologist a week from tomorrow, see if he has discovered anything useful about my legs/hips giving out. That has not improved the slightest. But one problem has been eliminated, which is good news.

David

David,

Glad to hear that your kidneys have been taken off the concern list. Same for the possibility that the bladder was taking a turn toward being more problematic. Sorry bouncing back from last weekend is so hard, but you are bouncing back.

Explorer

Thanks, Explorer. Was like having a sword hanging over my head the past few weeks, but now I can relax again, and concentrate back on my on going problems. Unfortunately, I have been having a strong increase in really long and painful bladder spasms. Hard to believe over 5 years later, and almost 4 years since having my fried bladder disconnected. Had one today that lasted nearly 10 minutes before letting up, actually pondered the ER, but knew they could do nothing about it, and finally, it subsided. Hard to believe the many thousands of spasms I have had to endure over the years, with no relief.

Sephie, strange but true, not a single doctor has shown the remotest concern over my continual weight loss. I always thought it was a possible sign of some serious underlying problem, but I guess not. Last time I was my current weight, I was either 30 or 31 years old. Another couple more months like this, and I will weigh what I weighed when I got married in 1974. At some point, I would think that it wouldn't be healthy. When I went through this a year or two ago, I was sent to a good gastro doctor, but of course, he couldn't find anything to put his finger on. Eventually, it went away on its own, and I slowly regained all that lost weight. This time seems different. I absolutely have to think to even eat at all, it's like the thought of eating or feeling any hunger is totally absent. If it weren't for my wife coming home and wanting dinner (which I prepare M-F), I am afraid I wouldn't eat a bite for days on end. I even have to force myself to drink ensure or boost some days. I absolutely have zero hunger or appetite. Just weird and unnatural. Trust me, I use to be the king of sweets and loved junk food as much as the next person. Haven't even had an chocolate in nearly 3 months, unheard of in my world, lol. Use to be a daily fix with me. Well, I got enough to deal with, hopefully my body will figure out things on its own.

My oncologist's only remark was that perhaps it was stress or nerves. But I told him I don't sit around worrying about anything, and I don't feel stressed, and I usually show no signs of depression. Other than the pain and fatigue, I am pretty satisfied with my life.

David

Hi David,

I'm glad to hear that you got an "all clear" on the kidneys and apparently the bladder too. Also glad that you have a plan in place to have your teeth taking care of. This is major progress!

I hope that they can turn their attention now to your weight loss and get that under control. It sounds like you finally have a team of competent doctors. It must be a huge relief.

Best,
David

David,

Sorry to read that you can't go the implant route for your teeth replacements. I'm obsessed about my teeth ever since getting braces as an adult. I had to get a single-tooth implant 5 years ago. It was expensive, and only partially covered by insurance, but was worth every penny. I, too, had bone loss, but did not need a bone graft.

For those who need extensive implants, they can do bone grafts and also anchoring implants--like fence posts-- that hold teeth in between the implants.
It is amazing how far dental science , like medical science, has improved in recent years.

Sorry to hear of your ongoing troubles. If you haven't already, you should have a thyroid study TSH, FT4 and thyroid ultrasound to rule out a thyroid-pituitary endocrine problem, which is the cause of many "mystery" symptoms like muscle pain, weakness, bladder malfunction, rapid weight loss, etc. (especially hyperthyroidism--Grave's disease). One series of test results is not very reliable. Serum studies should be done serially at the same time in the morning (7-8 a.m.). I'd be interested to know what your testosterone levels are as well. Could be low. Just a thought since lupus, MS, ALS and all the rest have been considered and ruled out. As I've said previously, narcotics will interrupt pituitary function. So too will certain thyroid issues. I am not a physician but have some knowledge on this issue for better or worse. Stay tough and don't give up. You've ruled out almost all the terrible possibilities.