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Back From Uro/Surgeon's Office, not good news

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Posted 2/23/2010 1:12 AM (GMT 0)
Ohhhhhhh so disappointed for you. . .
Thank you for your faithful updates
CareBear
Posted 2/23/2010 1:25 AM (GMT 0)
David,
I'm so sorry for what you are having to endure. I'll say a prayer for you.
Posted 2/23/2010 1:35 AM (GMT 0)
Thank you Mike and Mal

Michael, all I can do is to keep on keeping on

Compiler - i am open to a new direction or sense of direction, but when you research strictures as a chronic situation, as opposed to a one time event like it is to some, there's only so much out there that can be done.

don, thanks too, if you put the pedal to the metal, i can make charleston in 3 hours or so. so that's not out of range for sure.

carebear, thanks and hugs, hope your bear is doing ok too

EdC, thanks as usual, my friend.
Posted 2/23/2010 1:38 AM (GMT 0)
saying im sorry you are enduring this pain just dont suit me at this point, much less suiting you. i am furious with the outcome of all you had to endure. if prayers worked wonders we would all be home free. gods time is not our time and we will have to wait to see what he sends. i cant get over this situation for you. i just hope your uro has another game plan lined up for you. i am angery at many things that have happened to me and others, and to you right now. we have a right to be angry but it dosnt solve the problems we endure. the future holds your psa as the brightest thing to look forward too. i hope it will be what we are looking for. you are one strong man. i care and think about you all the time. neil
Posted 2/23/2010 1:41 AM (GMT 0)
thanks neil, you and I both have had a fit with this particular problem, i am so thankful that your "fix" seems to be working, and i hope and pray it stays that way for you. thanks for your friend ship

david in sc
Posted 2/23/2010 1:42 AM (GMT 0)
David. Just sat down and noticed your latest thread. I have to admit i was almost afraid to read it. I thought to myself...NOW WHAT? You continue to inspire me (and others here) with your never ending courage to keep on keeping on. As much as i struggle with my own situation,i have to remind myself how lucky i am. You are in our thoughts and prayers. You are theeee "IRON MAN"..........turner
Posted 2/23/2010 1:48 AM (GMT 0)
David,
I don't post very frequently, but I read the board just about every day. You are always such a positive voice for all of us and it pains me deeply to read your story. I will fervently pray for you to finally resolve this. I think you have certainly served your time in catheter 'purgatory'. The suggestions about getting to Hopkins or Mayo seem prudent. You will be in my thoughts and prayers through April, at least, when you get your next all-important PSA result. God Bless you and keep you!

john
Posted 2/23/2010 1:55 AM (GMT 0)
thanks turner, iron man? nah, more like a fresh loaf of white bread

john, thank you so much for your words
Posted 2/23/2010 1:56 AM (GMT 0)
Sorry to hear but I know you can handle what is thrown at you so hang in there. Hopefully the next procedure will work.
Posted 2/23/2010 2:08 AM (GMT 0)

David

Just saw that you had posted.  I was so hopeful that you would finally be posting some positive news after all you have been through.

Unfortunately that was not the case.  I had to wince quite a bit reading about your ordeal today.

I am praying for you that you will have some positive resolution to this unending problem and that your PSA result will be favourable in April.

Skeener

Posted 2/23/2010 2:59 AM (GMT 0)
rob, i am sure doing my share of making the local hospital rich, as this next one will be my 5th corrective surgery since the big one.

skeener, thanks, my dr was very sensitive to the pain factor and with 100 mg of demoral in me, it should have killed any pain, but unfortunately, still a lot of post radiation damage in the same area. we were both hoping he could have finished the procedure that he started, but i would have never been able to withstand the rest of the dialation process while being concious or not. one day, this has to behind me, just another set back today, and another delay.
Posted 2/23/2010 4:25 AM (GMT 0)
David, this is not what I wanted to read.

I'm so sorry. Small consolation, I'm sure, but you really are an inspiration for your gung ho positive attitude and your honesty when sometimes, even for you, it's almost too much to bear.

I've got you on my prayer list.

Sheldon AKA Sleepless
Posted 2/23/2010 4:28 AM (GMT 0)
Thank you Sheldon, could use some of those prayers, I think.
Posted 2/23/2010 4:40 AM (GMT 0)
We can all use friends keeping us in their thoughts and prayers, David.

Also important, as you noted in your initial post above, is your April PSA. I've been watching some of the Olympics this evening --- let's go for a Gold on that one.

Sheldon AKA Sleepless
Posted 2/23/2010 2:01 PM (GMT 0)
David,

Thanks for the hugs.  Give your wife and yourself one from Bear and I.  I wanted to make another reply on here since I did not check the box for reply postings on my other one :) but since I am here, will make a comment...

Hope this comes accross with a smile the way it is intended. . .

I was thinking that your scar-tissue maker is stubborn!!  Kind of goes along with your diligence in attitude and perseverence--just seems to be "who you are" evrything just keeps going no matter what.  Looking forward to day that you and your scar-tissue maker can live in agreement and peace.  Silly I know, intended to give you a smile in the midst of your trial.

Reminding you that you will never know the amount of encouragement that is being reaped from your "paying forward" investment.

CareBear

Posted 2/23/2010 2:56 PM (GMT 0)
Thank you again, carebear and sheldon.

Need all the help I can get at this point.

David in SC
Posted 2/23/2010 5:44 PM (GMT 0)
David, were it me, at this point, I would be looking for the nations best specialists of this condition (abnormal scarring and tissue growth of bladder necks) anywhere in the country and trying to get a second opinion and alternate exam and diagnosis. The fact that you have such an abnormal growth problem is one that would tell me that even the best generalist may not be effective in treating your individual condition. Not saying your doctor is less than great, but there's a reason doctors do specialize and you have the best case diagnosis for needing a specialist now as anyone I have heard of. Sorry if you disagree, but I think it is important that you look for specialists now, before committing to a course of further surgery, redoing the bladder neck or stents or permanent incontinece.. shakehead wink
Posted 2/23/2010 5:55 PM (GMT 0)
David,

I was wondering how you have been doing and now you have answered. You sure have been through it all. Hang in there and wishing you the best on your next round of treatments.

Larry

Posted 2/23/2010 5:58 PM (GMT 0)
Sorry to see you haven't gotten any relief yet.  Your situation has me worried.  Had a stricture in January, got scoped and it opened up.  Cath for 5 days.  Stream started slowing down again last week.  Went to the Uro/Surgeon.  He said that it was not that bad when he looked at it in January.  Did a flow test.  Said that the slow stream might be what I have to live with.  He discussed problem with another Uro/Surgeon and they both agreed to just watch it and hope I don't block up.  So far so good, but if the weak stream (sometimes dribble) I have now is permanent, things willl not be pleasent. My doc seems to not want to do any kind of surgery again because of the extremely difficult time he had making the bladder/uretha connection during my original surgery. He said it has something to do with my anatomy/position of bladder. I asked about the posibility of some kind of stent in the future if this continues and he said stents do not work well for this kind of problem.  They can actually make things worse in the long run.  I dread having to go thru what you are going thru.  I hope they find a way to fix you soon.

Posted 2/23/2010 6:46 PM (GMT 0)
James, I don't really disagree with that line of reasoning at this point. This next correction will be the last attempt on the current game plan. What the dr. tried to do yesterday may have worked, but unfortunately, the in office sedation wasn't strong enough to over come the physical pain involved in the procedure, and the dr. believes that is because there is still collateral damage in that area from radiation.
I am not about to agree to some radical surgery or stents or anything else at this point without another qualified opinion. My own dr. is not suggesting that I do anything radical at this point.

Larry, just hanging in there, still trying to make the best out of a bad situation, not much else I can do at the moment, thanks though

Subic, we do seem to have a common thread here with this type of problem, the big difference I see is that mine is definitely a chronic issue despite all these attempts to fix it. After the failed procedure yesterday indicated, the dr. was amazed once again at how fast my bladder neck can close up from scarring. In just barely a month's time, it went from being fully open to just barely being large enough to fit a miscroscopic wire through, not open enough to be usable. He too, discourages the use of stents for a solution, as they are very probamatic in that area, and could make matters much, much worse. I am glad you are not having as much trouble as I am so far, and hope you stay that way
Posted 2/23/2010 7:08 PM (GMT 0)
Hi David,

As you may know, we have the Winter Olympics here in Vancouver right now and if there was a medal awarded for pain and suffering, I'm sure you would qualify for gold or silver. As it is, I can only add my voice to all your friends here on this forum to tell you how sorry I am that your journey has not ended yet. I can only hope that it will soon.

Wishing you all the best in your battle.

Your friend,

Magaboo

Posted 2/23/2010 7:10 PM (GMT 0)
Thank you Magaboo, hope you are enjoying the sports. Still actually haven't watched any of it, other than seeing summary in the news.
Posted 2/23/2010 7:52 PM (GMT 0)
David,

I just read your thread and all the replies. I can't think of anything to add that hasn't already been said except ditto. I give you the gold, silver, and bronze and my best wishes.

Steve
Posted 2/23/2010 8:54 PM (GMT 0)
Goddam Dave, you just can't catch a break. I'm hoping the law of averages kicks in and gives you one good medical appointment soon.

Keep fighting and I agree with the others you may want to get another opinion.
Posted 2/23/2010 9:03 PM (GMT 0)
realziggy - yeah, i know the feeling, you would think the law of averages would put me on the winning side of the coin flip once in a while.
i am entertaining and researching other opinions, and see if there is any specialist above and beyond my normal access.

ohio - you say i never had a competent medical team? you have no first hand knowledge to say a statement like that with any credibility to me.  But thank you.
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