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  • Proposed solution for Neo incontinence

    Posted by Webs on April 9, 2009 at 3:37 am

    Well I think by now most of you know that I am one of those women that is incontinent with the Neo-bladder. I try to limit myself to 64oz of liquid a day, try not to drink much after 6:00pm etc… Puts a crimp in cocktail time.:silly: I am the Queen of Kegals quite frankly I find myself doing them even when I am not thinking about it,:woohoo: None of it has helped! In fact my incontinence is getting worse.:angry:

    I saw Doc V. today. He has talked with the surgeon who created my Neo, who basically said that I should continue what I am doing and suck it up. My words not his just his intention. Bless Doc V he does not think this is acceptable.

    He believes that they should be able to do a sling like they do for women who still have their bladder and are incontinent. He will check with his associate who does 5 of these a week. He will also check with Doctor Roze? at UCLA who is doing a spiral sling. Either way they will have to do a pressure test on my bladder. If the pressure threshold is below 60 he thinks the spiral sling would be my best bet.

    The regular sling is a piece of mesh that goes under the urethra and is tightened to lift the urethra up. The spiral is a piece of mesh that is looped around the urethra. I need to look into both of them more. Doc V has promised to get back to me no later than Monday, but will try to get back to me tomorrow.

    Needless to say I am really hoping this is the solution, but am trying not to get my hopes up to high.

    Webs

    Silk replied 15 years, 8 months ago 7 Members · 22 Replies
  • 22 Replies
  • silk's avatar

    silk

    Member
    June 17, 2009 at 9:59 pm

    Webs,

    I am so happy to hear you have decided not to have the “sling”. I Googled “sling for neo bladder” and a few woman had major problems, infections, blood, the “sling” adheared to the neo causing a lot of pain during voiding and still had to cath.

    I do not know what I would have done a year and a half ago without this wonderfull site and the many that answered, and knowing you are not alone helps so very much.

    Before my bladder removal my surgeon even recommended this site and I had told him I had found this site to be so informative, with caring and honest people, it truly was a blessing.

    I hope others read our replys and questions and it will help all who are/will possibly face this issue.

    Hope and attitude are so very important, and this site has given both to me.

    Silk

  • webs's avatar

    webs

    Member
    June 17, 2009 at 8:18 pm

    Thank you Silk, but I had already decided that the surgery was to dangerous. I like my survival odds to be better than 50/50.

    Webs;)

  • silk's avatar

    silk

    Member
    June 17, 2009 at 2:41 pm

    The surgeon did explain and he would not recommend a “sling” for a cancer patient, a dropped bladder but not a patient that had bladder cancer. To many problems, infections, return of cancer, etc.

    Silk

  • silk's avatar

    silk

    Member
    June 17, 2009 at 2:39 pm

    Hi,

    I had a neo bladder put in a year ago.

    Just had my yearly cat scan and bladder scope and all is great, however, I am not able to void either. I still drink a lot of water for the kidney function but I cath. every 2 1/2 to 3 hours day, at work too, and also at night.

    I spoke to my surgeon about a solution and he advised nooooo sling because of more possibility of cancer returning and this is common in women that have their female organs removed, the bladder flops.

    I have adjusted well with the situation and it is what it is, it could be so much worse.

    Please give it a lot of thought before you would have the surgery for a sling.

    My surgeon has been in the Miami paper, that is where I am, for his proceudures for bladder removal and also on TV.

    If you have any questions you can e mail me on my on site email.

    I do not go on this site often.

    A warrior,

    Linda/Silk

    Linda.

    I removed your email address if you put it here on the forum it gives your direct email to the world. If someone posts to your online email the system will email you letting you know you have a email in your account. We are all about personal privacy and online safety I hope you understand.

    Cynthia

  • mmc's avatar

    mmc

    Member
    May 12, 2009 at 4:10 pm

    Wow! Seems like the doc could explain that it is medically necessary since the neobladder did not work “properly”.

    Good luck in any case!

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • webs's avatar

    webs

    Member
    May 11, 2009 at 5:57 pm

    Mike,

    I briefly considered a conversion.

    Pro’s: no more incontinence, being able to see where to put the catheter.

    Con’s: Insurance will not pay unless it is a medical necessity, another long surgery and recovery time, the chance of something bad happening while on the table.

    My family and husband are not ready to take that chance. I have a 9 year old and a 13 year old who are just now starting to trust that mommy is ok.:dry:

    So for now a conversion is not on the table. Maybe when I win the lottery to pay for it:lol: and they a little older.

    Webs:kiss:

  • mmc's avatar

    mmc

    Member
    May 11, 2009 at 1:12 am

    Webs,

    Would conversion to an Indiana pouch with the navel stoma work?
    Seems like it might be better than incontinence…

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • webs's avatar

    webs

    Member
    May 10, 2009 at 11:22 pm

    Well I thought I would update the curious on the sling option. The experts on this coast and at the Cleveland Clinic all agree that the sling is to dangerous and difficult to do on a neo-bladder. :S Turns out the neo is bigger than a normal bladder causing complications.

    I will keep trying for continence the old way, but am not optimistic. There is some talk of injecting bulking agents into the urethra, but the long term results for those are not promising. Seems like they are more trouble than there worth.

    Don’t worry fellow female sufferers, if I ever find a solution I will let you know.

    Webs :kiss:

  • 's avatar

    Guest
    April 19, 2009 at 10:55 am

    Whilst here at home have had a quick surf of the ‘net’ re botox etc but am not sure it would help. Sorry for getting your hopes up.
    I found this article which explains the procedure: http://www.newscientist.com/article/dn2327-botox-cure-for-urinary-incontinence.html
    Anne

  • 's avatar

    Guest
    April 18, 2009 at 1:07 pm

    Webs!
    I had a bit of a thought, lying in my hospital bed last night, about your problem and a possible solution:
    I remember meeting a lady on one of my previous hospital admissions who was in for botox! “Why?” we all asked – quite pertinent as we were on a Urology ward! She was having it to combat her chronic incontinence. Not sure how it would work and have not looked up any references but could it be another avenue to explore? If the Docs are considering a procedure they would offer for a ‘normal’ bladder then why not this procedure too? I would imagine it might need to be repeated regularly but at least it is not as invasive as the surgery?
    Just a thought!
    Anne
    (Currently at home on day leave – need to go back at 4.30pm to have a new canula jammed -er I mean placed! – ready for the next lot of antibiotics. Allowed out to play tomorrow too!):woohoo:
    :woohoo:

  • gracie's avatar

    gracie

    Member
    April 15, 2009 at 5:37 pm

    Hi Webs,

    I checked with my surgeon @ UCSF – Dr. Konety – about converting from a neo to an Indy.

    He said that first there needs to be an evaluation of what was done during your surgery for the neobladder. He has done this type of conversion surgery before (neo to Indy). (just a note – he worked with Dr. O’Donnell previously)

    Maybe you could consult with him? Let me know if I can help in any way. He is a great surgeon and a compassionate person.

    Gracie

  • 's avatar

    Guest
    April 13, 2009 at 10:46 pm

    I am always amazed at how quickly i can reach someone at The Cleveland Clinic…they have got to be the most personable caring group around….anyway i got in touch with Suzi..Dr. Falcone’s nurse…and she said he has not done the sling for neobladders BUT She HAS PEOPLE!!:laugh:
    So she’s going to do some fishing for me in both the Uro and OB/Gyn department and see what she can come up with. Hope i hear something soon………Pat

  • 's avatar

    Guest
    April 13, 2009 at 7:24 pm

    Those are all people from USC/Norris.including Dr. Stein, Eila Skinner and Donald Skinner.
    This is where Dr. Gill has gone and i wonder if he could add anything to this if only i could find him!! Maybe i will write Dr. Falcone(Top OB/GYN) at The Cleveland Clinic who did my laproscopic removal of all my female organs and worked with Dr. Gill frequently so has a definate knowledge of neo’s and the such. I’ll let you know what i find out.
    Pat

  • webs's avatar

    webs

    Member
    April 13, 2009 at 7:15 pm

    Sorry Pat didn’t realize I did not copy that part. Here it is seems like some big names.

    PUBOVAGINAL SLINGS FOR STRESS URINARY INCONTINENCE FOLLOWING RADICAL CYSTECTOMY AND ORTHOTOPIC NEOBLADDER RECONSTRUCTION IN WOMEN
    The Journal of Urology, Volume 172, Issue 1, Pages 219-221
    M. QUEK, D. GINSBERG, S. WILSON, E. SKINNER, J. STEIN, D. SKINNER

  • 's avatar

    Guest
    April 13, 2009 at 7:11 pm

    Charlotte…….who wrote this? Pat

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