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Posted 2/14/2017 4:00 PM (GMT 0)
I say this in all seriousness...change your moniker...your mind... no gasps... no eye rolling...avenues appear...even in doubt...especially so....
Posted 2/14/2017 4:49 PM (GMT 0)

Purgatory said...
Well, try living my agenda for nearly 9 years now, and tell me how it would make you feel? I have been dealing with continuous severe pain since July 5, 2010. Coming up on the 7 year mark. The average person can neither comprehend or perhaps, even believe that's possible (except those in chronic pain life styles).

If my eyes are open (awake), then I am hurting badly, if my eyes are closed (sleeping) then I am tormented by painful and hideous nightmares. Choice A or Choice B? It's the old "do you want to be shot or stabbed" question.

You've been dealt a really bad hand! I've known a few people afflicted with migraine, and I had mild case earlier in my life. So I have a little experience with chronic pain. What you're going through is just terrible.

I'd echo what another poster suggested; try to get a referral to Mayo and let them do a work up on you. At this point, why not??

I see HealingWell has a forum for chronic pain. I'm sure you've looked at it, but search out other sites for more information and possible treatments.

My deepest sympathies, and hopes for a less painful existence.
Posted 2/14/2017 5:06 PM (GMT 0)
David, any pain sucks period!! so you have every right to be upset in many different ways! I like the fact that you have the courage to post about your pain and troubles in a measured way, and I like the way you keep pushing back… love-it! Your posts are a good learning tool in many ways. Best Wishes!
Posted 2/15/2017 3:47 AM (GMT 0)
bolo: why? not following your logic here.

tennis: thanks. I use to be part of the CP group here at HW, will be polite and say, I dropped out. I do have a few dear friends from there, some post here with me. The late Barb from HW CP was a special saint to me, made all my suffering seem like nothing, yet she kept me encouraged, well, we encouraged each other.

gear: there are few tests/scans/procedures that I haven't undertaken several times over the past 8 plus years.

I still have a good PCP of over 20 years, a good urologist of nearly 10 years, a good therapist at the VA. I have been through at least 4 neurologists - all of them sucked - I think they are all guessers in that trade.
Posted 2/15/2017 3:56 AM (GMT 0)
Today, had a scary event. Had lunch with ex boss, he got up to leave and started walking away. I tried to swivel to the left in the booth, and could feel nothing from the waist down. I mean nothing. I motioned him back, he was at the door and tried again, nothing. I told him, and he helped me to the edge of the seat. I tried to stand up and couldn't. So he helped me to my feet and held me up until things felt right again. I then weakly was able to walk back to my car. This is how things have been on and off the past week. I will go to get off the couch, and can't get my hips or legs to work, especially on the right side. Ever since that failed 2nd ECT treatment 2 1/2 weeks ago, having more and more lack of feeling in all of my affected pain areas. Little bit scary.

Later, I was at my Pain Doctor for normal monthly visit. After sitting on a rock hard chair for 10 minutes, had no choice but to stand with my cane for nearly 45 minutes. Told doctor about the ECT experiment. She was shocked. She said anyone with such a known history of severe nerve damage should have never been told to have ECT. She thinks that last jolt may have "fried" what were already badly damaged nerve bundles, with the brain now sending the wrong signal. Yes, the ECT doctor had my records and was aware of my history, but he felt it was no reason not to try. This is why my journey is so frustrating, when even doctors can't agree.
Posted 2/15/2017 7:30 AM (GMT 0)
Hi David,

You have had so many doctors, so many incompetent doctors.
I believe you need a full multidisciplinary review at a place like the Mayo clinic and for them to come up with a clear treatment plan. With everything that has happened to you at least it will give you the peace of mind that you have consulted the best. Your weight loss, bladder issues, radiation scarring, nerve damage, weakness on one side, loss of sensation, lack of sleep, chronic pain, double depression, PTSD, side effects from ECT, prostate cancer, rare skin cancer and the list goes on. I recall that your boss offered to fly you there and maybe it's time to take him up on the offer.

Regards,
An
Posted 2/16/2017 1:50 AM (GMT 0)
He meant well in his offer, but he is not in any financial position to help. He wants me to go to John Hopkins, probably would be my choice if money were no issue.
Posted 2/18/2017 7:24 PM (GMT 0)
Purg:

Wow - I've been away for 5 years. Back then, I appreciated your counsel and support. I'm really bummed out to hear of your struggles. Don't know what to say.

Well, I'm back again. After 5 years of 0.1 PSAs, six months ago it popped to 0.2 and then, this week, 0.3. Time to nuke the area, I suppose. Maybe get some girlie hormones - it may be nice to have boobs available anytime I want.

Hoping things get better for you. Tony
Posted 2/18/2017 10:06 PM (GMT 0)

Purgatory said...
If my eyes are open (awake), then I am hurting badly, if my eyes are closed (sleeping) then I am tormented by painful and hideous nightmares. Choice A or Choice B?

yeah....this is no good. A bad place to be. Pain wears ya down....in and of itself.
Posted 2/22/2017 7:57 PM (GMT 0)
Hey David,

Just thinking of you and hoping your nerve bundles have calmed down some so you aren't in so much pain. Let us know how you are doing when you get a chance.

Gentle hugs.
Posted 2/22/2017 9:02 PM (GMT 0)
Hi Dave,

Long time no see--Sorry you're still having such problems, but I'm glad you're still breathing.

DJGuy
Posted 3/10/2017 1:47 AM (GMT 0)
David, I was wondering how you are doing. I haven't seen a post recently.
Posted 3/10/2017 3:14 AM (GMT 0)
UPDATE MARCH 9TH

Sorry, been kind of out of touch with everyone and everything lately.

Set to see my Oncologist in 2 weeks, been about 5 months, too long.

New diagnosis, all the pain in my right shoulder has been diagnosed by a good ortho doctor as a "frozen shoulder". Just finished first week of PT, 3x a week, for 6-8 weeks. No surgical answer. Dr. said was more common with left handers that do everything left handed - left sided people like me. The muscles around the right shoulder haven't been used as much, and they grow tightened to the bone.

Finished 12 weeks of PTSD therapy, but therapist says I have long way to go, so its being kept open ended, since my trauma events have become so embedded over the years.

Having lot of problem with hands shaking, sometimes body shakes, can't hardly write or keep food on a fork or spoon.

Seeing a cardiac doctor for first time ever next week, to have a basic work up.

Still heavily depressed, I see that doctor next week to see what he wants to try next.

about it for now
Posted 3/12/2017 1:53 AM (GMT 0)
David,
Thanks for the update, I check this board often to see how you are doing, and worry when we don't see you for a long period. Know that you continue in my families prayers.

Beachbum
Posted 3/16/2017 10:57 PM (GMT 0)
Hi David! I came by to check up on you and was sadden to read the news about Mel's accident. You may remember (way back when) that Mel and An posted with us on that August Surgeries (2010) thread.

I am sadden to read the news about you. It's like enough is enough. Ron wanted me to get an update. I hope things work out with the new doctor. You remain in our thoughts and prayers. Ron is still suffering from shingles. He's not doing too well but it's nothing compared to others on here. Take care and God bless....
Posted 3/16/2017 11:03 PM (GMT 0)
You have had so many doctors, so many incompetent doctors.
I believe you need a full multidisciplinary review at a place like the Mayo clinic and for them to come up with a clear treatment plan. With everything that has happened to you at least it will give you the peace of mind that you have consulted the best.

I liked An's suggestion but see that you may be going to John Hopkins. I am sorry to hear about the severe depression and the problems with walking. It's been a long journey and we always wish you the best. You deserve the best treatment! Take care, my friend!

Post Edited (Aimzee) : 3/16/2017 5:07:27 PM (GMT-6)

Posted 3/17/2017 10:56 PM (GMT 0)
David- I had a frozen shoulder once and PT did it for me. It was extremely painful (the frozen shoulder, not PT). Would have never guessed that my physical therapist and I both would end up with prostate cancer. Oh the troubles and trials of life.
Now I have similar low level pain in that same shoulder that I blame on medications.

I hope your problems with depression improve soon. You are a strong warrior.
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