Part One: My visit with the Charleston Specialist

David -re the neuro option
Please don't think I was suggesting they do anything major such as surgery to sever nerves, I was thinking of a simple experiment with some local anaesthetic (like an epidural) to see what relief it might or might not bring, so good to see that the new doc also seems to be considering something like this.

Flowmax when you've no flow to manage is an interesting idea, it reminds me of a friend at university who gave me some of her "female" meds to help me relieve my stomache cramps despite me having no uterus (and it worked)

THURSDAY


Will give the new doctor credit for one thing, they are staying on top of things, I have had either phone calls or e-mails every day since I was there on Monday.

I picked up the MRI cd's he wanted to look at yesterday and mailed them off. Was amazed the scan center didn't charge me for them. Just took an 80 mile trip to get them and a 20 minute wait.

He wanted a closer look than the CT scans we went over together in his office.

david

I think he's in the class of doctor/surgeon's that likes the challenge of an unusual and tough case. that could work well in my favor if this ends up happening. if he doesn't feel like he can pull it off with a high degree of success, I am pretty sure he will pass on it, or think of an alternative.

david

Aside from having 72 gys of radiation slamming into an empty bladder (RO's fault), they also knew that I had this unsually deep and narrow prostate bed. The new doctor said this would be problematic for any surgery or radiation in that area, because all my parts down there are being compressed into a tighter space with less access. this anatomy issue caused surgical problems with my open rp, not allowing my surgeon to remove my right nerve bundles and causing a positive margin on that side.

probably caused additional radiation damage for the same reason. my ro only admitted near the end of my radiation treatments, that perhaps scattering was going on after all, stray radiation not hitting the targeted areas intended. this is not suppose to happen with modern imrt radiation machines.

david

Oh, David I am saddened to hear this latest news!  I am so sorry for what you are going through and praying you get the answers you are searching for and the relief you deserve.  It is good that you are doing research to see if there are any other answers.  I am glad the doctor was being honest with you.  You need some pain relief and I hope some kind of answer will come your way.   Could you stay in a hotel or rent a room near the hospital?  You need some good news coming your way!

Ron and I have been thinking about you and praying.  Ron still thinks of you when he's in pain.  He's went for his PSA test on Wednesday and will see the doctor next week.

Hugs,

Aimzee & Ron

Aimzee, hadn't heard from you in a while. Hope Ron is faring better these days. My daughter and husband live in Charleston, perhaps 15 minutes from the hospital that would be used. They only have upstair bedrooms, so we would have to perhaps rent a hospital bed and set it up in their dining room. A little too early to think about details, as no surgical decision has been made by either side.

Gibson - I believe the risk has a lot to do with the closeness and proximinty of so many vital things in the area, risks to the rectal wall and digestive system, the length of the surgery, and the shock on so many parts of the body. This business of me having a deep and narrow prostate bed absolutely complicates any attempt to get to the bladder

that too, sephie, I failed to include that. there are no clear surgical margins to work with, with all the fusing that has taken place.

woke up to terrible back pain. had to sit 3 1/2 hours on a hard wooden pew type seat in a court session yesterday afternoon, that didn't help. plus to court and back was 100 mile drive, and I was foolish enough to vacuum our entire house before I went to court (I get ocd about the cleaning stuff, we had lots of house company this week and I couldn't leave the house with the carpets with debris all over, lol)

on the way to court to pick up my ex-boss. hit a curb in my car, it ripped and blew out right front tire. I tried to jack it up to change, but hurt too much, so he called for help from a tire shop. that didn't help either, and ruined a 400 tire in the process. wasn't the best of days.

great idea. found out about her through some obscure personal blog, where this operation was just a tiny part of a lengthy discourse. I will see how current the blog was and see if there is any way to contact the person.

david

Purg,
Just a thought--My brother-in-law has bladder spasms and receives "botox" injections to relieve the pain..I'm sure that your doctors thought of that? Probably useless info!
Billed

gunfighter, never heard of that as a solution for the spasms. In my case, it's known that my disconnected and unused bladder is deteriorating in my body, so it goes a lot deeper than just simply having spasms. but will add that to my list of possibilities to discuss with the doctor in Charleston, I would think as Head of Urology, for a major teaching hospital, he would know of all options out there.

chris, I will check to see if it's the same person or not, she had Urostomy surgery like me, her bladder was left in (highly unusual) and she was plagued with spasms after, ultimately needing most of her bladder removed as this doctor discussed with me. thanks.

I don't feel sorry for me, we each have our own paths in lives and with our pc journeys, but I would think few if any other man here, has had to fight such severe physical set-backs and almost continuous pain associated with their journey. its really hard to someone to truly comprehend this after more than 4 years virtually without any kind of real break. and things never get better, only continue to worsen.

david

Todd, good to see you, can't remember the last time you reported in here. Hope you are still holding your own.

Yes, I was the driver, and I was on a narrow one-way street, no place to park, UPS and mail truck blocking road, was waiting for ex-boss to meet me at the car, so I had to pull over close to a old granite curb. Thought I had cleared it, the POP, felt a nudge and heard all the air go out at once, and the low tire warning came on my dash. There went an expensive 20" tire with only 5k miles on it. Put about a 3" rip in the sidewall, the joy of big rims and ultra low profile tires.

Fortunately, I had 2 brand new 20" Michelin's in my shed, so I went today and had them mounted on the front so that they would match.  My car, btw, looked helpless with a narrow 17" fake spare tire on it hobbling home yesterday.  Should of took a picture, it looked wounded, and steered terrible all the way with the other 20" tire trying to pull constantly to the left.  Was glad to pull into the yard.

I was told we would only be an hour tops at the hearing. Since we had to switch cars, left my cane in my car (that's a big problem when I don't have it) and the court seats were solid wood, just like a pew, and that 3 1/2 hours was a killer. Didn't even have my coat with me, could have sat on it.  Then the long drive in rush hour traffic back to my car, then another 20 miles back to my house.  Was totally shot by the time I got home after 6 pm, having also missed my afternoon nap for the 3rd time this week.  Been a tough week starting with the doctors grim report on Monday and being ran ragged ever since.  Hoping for a more restful weekend now that I've made it.

david

Post Edited (Purgatory) : 2/22/2013 6:33:23 PM (GMT-7)

David:

Good luck and hope you get a good response.

Too bad the flomax is not working.

Mel

Hi David, I've been following this thread but just now getting around to posting on it. First of all, it sounds like you have found a really fine specialist and I'm glad you went ahead with the appointment. Maybe it wasn't the news you wanted to hear but at least it's information that can help you with decision making.

I must admit that I also have the same thoughts as An shared on 2/19. As good as the new doc may be, he is mentioning the D-Word in the same sentence with the procedure and that obviously is a concern. I guess that even though it is clearly a huge PIA to get added opinions, I would suggest you consider a trip to Duke or Hopkins to meet with their specialists before going under the knife again.

In any case, best of luck; hopefully one of these days you will get good news.

Jim