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Posted 1/24/2015 12:48 AM (GMT 0)
Based on a very lengthy phone call a couple days ago with my VA Home Nurse, this is what has been scheduled to happen for me:

Jan. 29 - X-Rays of both hips and lower back (Greenville)

Mar. 3 - CT with/without contrasts for neck, left cheek, both hips (Columbia)

Mar. 10 - CT with/without contrasts for right eye and eye socket

A new brain CT with/without contrasts pending for brain/skull, depending on outcome of Mar. 10th scan

Surgery to remove "lump" in cheek pending Mar. 3 scan.

Apr. 1 - dental team to fit me for dentures to be made (Greenville)

May 1 - tentative, placement for dentures (hopefully), by then, will have been nearly 7 months w/o teeth

----------------------

On the weight loss/zero appetite issue, VA has chosen 130 lbs. as the line in the sand.  If I drop back to that, or below, serious intervention is planned on their end.  I was under  that briefly mid-October, but hovering in the low 130's currently.  I know if I would/could/should stop my sugar binges, weight would continue to plummet

At this point, have no interest in going back to my long term PCP (after over 15 years), feel like he left me hanging in the air, and throwing me under the bus.  Have no confidence that he's working in my best interest.

Thus far, my new VA team is far more in tuned to what is going on then any of my "civilian" doctors.

Still getting constant olfactory hallucinations, mostly anytime that I stand up, or move my head fast.  As foul as they smell, I fully realize that they are not "real" and by themselves, are not harmful, just an indicator that there's probably a more serious underlying issue.

And though I never mention them anymore, still have daily, multiple and very painful bladder spasms, almost 6 1/2 years post surgery, even though my bladder no longer functions and is no longer connected.  Never going to be an answer or solution for that, have learned to suffer through them.

Just hoping that something, anything, good or bad - will come as the results of all these scans.  Has to be answer(s) out there.

Posted 1/24/2015 1:02 AM (GMT 0)
Dear Purgatory,

I hope you get some good results from all your tests and medical procedures --- and some definitive answers.

It looks like your schedule is all laid out nicely, with informative answers coming to you step-by-step along the way.

Just remember that we are all standing beside you during all of this.

Caring thoughts sent out to you this evening,
Cyclone
Posted 1/24/2015 2:42 AM (GMT 0)
David,

Glad to see you're getting test done soon!! Trusting and praying everything will been just fine.

Take care,

Dave in Bartlett, TN
Posted 1/24/2015 3:53 AM (GMT 0)
Getting somewhere, I am hoping, after spending most of last year getting frustrated with endless tests that came up empty handed, while my conditions have worsened progressively. Hoping it will be better this time around.

I like the serious tone and attitude of my new VA PCP, I hope the VA doesn't switch him off like they did my last one.
Posted 1/24/2015 3:56 AM (GMT 0)
Google "The Telltale brain".V.S. Ramachandran author. It can be technical at time, tho the author tries to mitigate that. Even with that if you peruse it and pay as much attention to the phantom pain sections to find find some solutions of amputees. You may want to scoff at the concept of phantom pain with a "amputated " bladder. Example of a cure from the book. Left arm amputated getting pain. Right arm normal. Mirror placed where no arm is but reflecting so as to reflect the right arm. Right arm massaged and soothed. left side reflects this and pain is gone. True story documented many times with many phantom limb pain , itch discomfort. There are theories as to why this works and the author offers his . the explanations are heady and takes some effort to understand. Not sure how this would fit in with a lot of the unexplained pain you endure. Perhaps a contact with the Author could lead to be in experimental whatevah. Its a fascinating read{study-verb}. but not for everyone.. FWIW. The other sections are fascinating also . There is a whole new future arising, don't get left behind, whatever your age!
Posted 1/24/2015 10:19 AM (GMT 0)
Purgatory. ..

I had both a bone scan and a pelvic/abdominal CT scan (w/contrast) in search of my hip pain. It took an MRI to show the severely pinched L4 nerve coming out of my the right side of lower back. It is moderately pinched coming out of the left side. The disk is compressed. It's helped alot just knowing the cause. The pain and weakness is still there but knowing the cause helps. I will know my options for cure in a week. Hopefully a small incision is all that's required. (It's the result of a 40 year old injury...just now showing itself).

Anyway...i hope they find the cause of your pain. People were looking at me kinda funny after all those tests and I was still a hollerin' "I'm hurtin'!!" In my case...it took an MRI of my lower back to tell the tell.

Naming the beast is half the battle. Good luck on your upcoming tests. you'll find what's causing this. The frustration for me was not knowing...

David
Posted 1/24/2015 10:17 PM (GMT 0)
Hope it leads to something that can be addressed quickly for you.

New teeth... Now that is exciting.
Posted 1/26/2015 7:21 AM (GMT 0)
David, I hope these test results are revealing of some real causes. Lord knows, you've been through enough... more than most can handle. Still praying for better health!
Posted 1/28/2015 7:11 AM (GMT 0)
thanks, jerry

thanks aimzee, sure hope Ron is still holding his own, hadn't seen an update in a while on him/you
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Update: Tuesday

Got a new letter from VA today, they are making me get special blood work, tomorrow at Greenville, prior to a special CAT scan of my neck early in March, on top of the one's I already mentioned.

I had so much blood work done by the VA recently, so not sure what they are wanting to test now for, but will find out tomorrow when I go to the Greenville VA Outpatient

Everything else is about the same. Still having the olfactory hallucinations constantly throughout the day, as before.

Will update as soon as anything new to report. Still waiting for the last PSA numbers, can't seem to get Gibbs to send me the results, have left messages and e-mails, but still no answer. This has never happened before, don't know what the big deal is this time
Posted 1/30/2015 12:35 AM (GMT 0)
Do feel the VA is trying to improve their service and image, at least in my area.

Went for the X-ray's this morning. My appointment was at 10 AM. Got there and parked at 9:55. Now, they have what looks like an ATM machine in the radiology dept. You slide your VA card in it, it checks you in, verifies your appointment, and what they are going to do, and shows you any upcoming appointments, First time I saw or used it. Then it prints off a ticket, with a number on it, and thanks you for your service.

I no sooner sat down and pulled my cell phone out to play with it, when the radiation guy came out and grabbed me. In 5 minutes time (possibly less), he got me on the table, and did a series of 5 "shots" of my hips and groin. And that was that.

When I was walking out of the building, it was barely 10:05. Most impressive. As I expected a long wait.

Been really impressed with this and other changes at my VA Outpatient Clinic here in Greenville lately, hope it keeps improving. Getting better service now than I was at my private PCP's office for sure.
Posted 1/30/2015 12:53 AM (GMT 0)
I have had the same great experience at the Oakwood, Ga Outpatient Clinic David. Really like my Dr. as well.
Michael
Posted 1/30/2015 2:06 AM (GMT 0)
Michael,

Really hoping the VA will let me keep my new doctor too. He's very serious minded, a bit on the tough and exacting side, but rather him be that way. Even on our first meeting, he was already up to date on all my troubles and extensive issues, could tell that he had taken the time to really read my medical records. I see him again in March, after these new rounds of x-rays, CT scans, and blood work are completed. Plus, they are getting my daily readings from the home machine they sent me, with it, I can be in touch almost instantly with my assigned home nurse, which is a nice feature too.

I think all the bad publicity the VA endured the past couple of years is starting to pay off for us vets, which can only be a good thing I have no complaints with the big VA hospital in Columbia when I have to go there, they seem to be well equipped and as up to date as most of the civilian hospitals I have dealt with in my area, just a bit of a long drive for me, that's the only bad part. about a 2 hour drive, which is pushing my personal limits. I can take their free shuttle bus, but it just drags out into being an all day trip, which wouldn't help me really. But it's there if I ever needed it.
Posted 1/31/2015 8:06 AM (GMT 0)
Update - Friday night (Saturday morning)

Got a surprise call this afternoon from the nurse of my VA doctor. She had been reading the notes from my VA home nurse, and got very concerned about the "lump" behind my right eye. Said the doctor wants to see me ASAP, and not wait for the next scheduled appointment.

They are going to see me next Wednesday, and bumped me ahead of a whole group of people. He wants to look at it again, and may decide to take some kind of immediate action. Her (and his) reasoning, with my track record of attracting rare cancers, they don't want to take any chance at this point, especially after the 3 bouts of porocarcinoma, being two on my scalp and once in my throat, and the large amount of radiation I took to the throat.

I was pleasantly surprised by this unexpected intervention on my behalf. Glad someone really reads these medical notes and is paying close attention.
Posted 1/31/2015 1:14 PM (GMT 0)
Good to see they care and are doing their job to an extent we don't always see in this day and age of "not my job". Great!

Cheers, Doug
Posted 2/1/2015 2:24 AM (GMT 0)
Doug,

I spent most of last year running in circles with my other pack of doctors, having endless tests, getting no answers, being left up in the air with some serious on-going issues, etc. Refreshing to see a doctor and staff at least act like they really care. Hope it stays this way, and I do get some answers soon before things get entirely out of hand.
Posted 2/1/2015 2:49 AM (GMT 0)
Glad to hear the VA is stepping up to do more for you.

You're always in my prayers,
Andrew
Posted 2/1/2015 5:56 PM (GMT 0)
Purgatory,

You and all of the men here at HW are in my prayers. Keep on fighting the good fight.

With Best Regards,
SciLife
Posted 2/2/2015 4:27 AM (GMT 0)
thank you scilife and Andrew

and to island david: thanks especially, sounds like you understand, least my long term oncologist believes my severe chronic pain issues, as he is my pain manager. its frustrating to have had so many scans and test to come up "empty" handed so to speak. the pain is real, 24/7, my pain meds at best on dampen the pain a notch or two, but there's never been a moment in over 4 1/2 years that I am not in constant severe level pain to some degree, except for when I am sleeping, and that's not often enough. I have learned that most nerve pain will not show up on scans, had too many doctor's tell me that over the years. glad you may be doing better.
Posted 2/2/2015 4:30 AM (GMT 0)
Pure/David , seems like you are on a good track. Hopefully you will start to see some positive progress very soon.
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