Sphincterotomy

[moondog]

Hi Brian,

[Baby Brian]

Hi Brian,

[Baby Brian]

I just had yet another urodynamics test done. Usually when I can't pee out the catheter and my pain is really high they stop the test. This time they really pushed me beyond extreme, but finally got the readings to back up what I've been saying all along.

Hopefully this will convince my urologist to go forward with my sphincterotomy. I don't have the followup scheduled yet but they want me back in a week or so. Hopefully I'll find out then so wish me luck.

[Bettypooh]

I was thinking just yesterday that when I am dying from cancer in the hospital and wanting a cigarette, just what real justification can they have for refusing me- but they will anyway It's what I call the "Medical Mindset" where you see only what you want to see, believe that everyone works just the same inside their skin because that's what you were taught, and that everyone wants to be what you envision as the perfect healthy person. If I am already dying, them what harm can a cigarette do to me? cause me to die 0.00000001 seconds earlier, as if that matters at that point? No, they would rather cause me unneeded stress, mental anguish, and duress just because they can- not because it would matter or make any difference. For them it's a personal victory, but over what?

[Thad]

hugs Baby Brian tight* good luck! glad things are finally being seen by the "professionals"

[Dill_Pickle]

Hey Brian

I think moondog is telling stories, with the whole truth. Obviously, fertility is no issue for you, but, as Miss Betty notes, it might be for your doctor, just as wearing diapers seems to be for so many doctors. (hands miss betty an e-Cig to try so I might not have to set my asthma off with the smoke, might smell something pleasant instead, maybe put off lung cancer).

Moondog makes it sound to me like the choice of surgeon and technique matters substantially here. In your shoes, I would certainly want Moondog's last surgeon, and I would want any surgeon at all to discuss moondog's experience and what the plan will be if scarring becomes an issue and how to prevent it from becoming an issue.

Best wishes and best of luck!

[diaperpt]

Bettypooh, I just have to interject this now. I agree wholeheartedly with your thoughts on being denied a cigarette when you're dying from cancer. But PLEASE stop smoking now!!! I know how hard that may be and how you may not even really want to give it up, but I think we've all known far too many victims of cancer not to speak out.

[Baby Brian]

Just a quick update. I still don't have a follow up appointment yet. I did get a call from their scheduler and she said my urologist wants to discuss my results with a colleague of his then he will call me directly. I can't tell if this is a good thing or a bad one. Either way I'm a getting a little anxious now.

[Bettypooh]

'Ladies and Gentlemen, Welcome to flight DD2014. Bettypooh is temporarily hijacking this thread but we should still reach our destination on time"

[moondog]

I just read the post from Dill_Pickle and felt the need to respond.

[Baby Brian]

Moondog, thanks. I don't know for sure if what I have is strictly neurogenic or not, I can only say for sure what I feel. I definitely have high bladder pressure as is evident from my latest test. I do not feel my bladder filling up, and I also have an incredibly hard time going. When I get an urge it usually wont hurt right away. I used to just flood my diapers almost right away, but now I can't seem to do even that. The delay I get from not being able to go is what causes the pain. I do know that the sacral nerve (that relays the signal that I'm filling up and when to relax my sphincter) is separate from my pain nerves around the bladder. As such, I believe my problems are probably In part neurogenic and part obstruction.

Given my extremely limited options to overcome this I do believe a sphincterotomy is the next logical thing for me to try. Will it work? There is only one way to find out for sure, and if it doesn't then I would still have other more extreme options available to me (such as a resectioning and/or stoma). Yes, I recognize there is a chance it won't work me, but you also have to look at the chances a stoma or bladder neck resectioning won't work either. Not to mention the probable side effects of each one too.

[agapoulo]

[...]

also in the same mind set for the botox. Why wouldn't they want to do it? Instead they act like it isn't even a procedure or valid option but I have read about it in a couple of different places- one being a medical papers web site (very boring but still there).

[...]

[Baby Brian]

Good news everybody, my urologist has turned down doing my sphincterotomy. I'm so elated it think I might try personally fling off a tall building.

This is somewhat depressing, but it's actually it's not that bad. I was at least able to convince my urologist to try the botox injections in my sphincters to deaden them. The end result will be the same, yet temporary. He agreed that if this goes as good as expected then he would be "more willing" to do the surgery.

At least something is finally about to get done, and though small, it is in the right direction. In that sense I suppose I am at least a little happier for the small step in the right direction I'm going to get.

[Spargano]

I am glad you are getting at least a little progress! I pray he comes around when he sees your quality of life so dramatically changed for the better.

Spargano

[Bettypooh]

No0thing you want ever comes to you quick enough but bad things come too fast, so look at the progress and not so much at the tuime it's taking Better to reach a goal a little late than to never reach it at all. After they have tried everything else, they can have no objections concerning the only thing left untried- and then your patience and persistence will give you the win

[wolfpup2008]

Good for you, Brian!

I am looking forward to your reporting on your experience.

Best of luck.

[Baby Brian]

Just a quick update. My urologist has scheduled me to get the botox injection on the 20th. He only wants to do my external sphincter though, not both.

[adhb]

Brian,

Good luck with the Botox. I hope it works for you the way you hope.

[Baby Brian]

Just had the botox injections done today. They knocked me out so I felt nothing. Recovery was nothing really, no pain in my bladder or penis but my throat is sore (from the breathing tube). I do have a (very slightly) easier time peeing now, but not much different otherwise. It will take 1-2 weeks for the botox to really start working in earnest though, so I'll let everyone know what changes I end up going through.

[wolfpup2008]

Baby Bryan: please keep sharing with us your experience with the Botox injections. Thanks!

[blitz1027]

Yes please. I want to know how it works for you. The PA I saw yesterday mentioned it as a possible treatment.

[Baby Brian]

So far still no real difference on me peeing any easier. I did have a bit of blood in my pee after the procedure, which in its self did not hurt. It was just a side result from all of the needle punctures to inject the botox all around my sphincter. That had cleared up in less than 24 hours.

Right now my bladder is constantly sore from all of my usual pushing and straining. I am also still bleeding from a hemmorohid-ectomy I had done about 4 months ago (which is only very slowly healing because om my having to strain all time). Normally I'd have put in an indwelling folley cath by now, but I've been hoping this botox will start kicking in soon.

[Spargano]

I hope it either does what you want it to, or gives this urologist the final straw to ok the sphincterotomy. Good strength!

Spargano

[Baby Brian]

YEAH, my doctor finally agreed to do the sphincterotomy!

[diapertime42]

Isn't it an out-patient thing that he can do in his office? Or does it require a hospital stay?