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    botox

    I had botox for bladder spasms, 200 units

    worked for a month, they quit working

    dr said may need 300 units

    how many units is the norm

    ty
    jack

    #2
    As I recall from my Botox experience 100 to 300 units could be administered. You may want to ask your urologist how many injection sites he uses. The more injection sites, the broader the coverage in the bladder muscle. Some physicians use just a minimal amount of injections sites.

    That said, I found that I got ever diminishing results with each course of Botox injections, until with the fourth course, I got no benefit at all.

    All the best,
    GJ

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      #3
      I had 300 units of Botox administered in May of 2015. I had a second set administered in March of 2016. Botox has been a God send to me. I’m dry, yeah!! No side effects but retention. I hope it keeps on working. I watched her inject from a TV screen. It looked like she did it all over my bladder. I had to press her to start at 300 units but when I convinced her that I cath regularly anyway she relented.

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        #4
        I just had it done two weeks ago and received 300 units, which is more than the typical 200 but given the nature of our situation urologist said was not unreasonable.

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          #5
          I received 300 units in February and everything is working just fine. I'm hoping that it will last a year before I need another one.
          DaDutchman
          C5/C6 since 2007 due to car accident

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            #6
            I'm trying to find a doctor in my area that will perform the botox treatment on me. My current urologist keeps saying it isn't beneficial for a person with a supra-pubic catheter. I told him that I knew of other people with SPC's that has benefited from it and even called my former urologist (who moved out of state) and he too said it could/would benefit me, but my current doctor won't listen. I'm frustrated as hell.

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              #7
              What problems are you are experiencing with your supra pubic that you think Botox injections would help? I've been managing my bladder with a supra pubic catheter for about 6 years, and except for taking a very, very low dose of oxybutynin, I can't see where Botox would be of any benefit. I had 4 courses of Botox when I was managing my bladder with intermittent catheterization, with ever diminishing results.

              Botox injections are meant to help the bladder retain more urine between caths when you are managing your bladder with intermittent catheterization. There is no reason to retain urine in the bladder with a supra pubic catheter. Supra pubic catheters are supposed to drain constantly. Can you cite specific instances where supra pubic users you know use Botox? I have managed my bladder with a supra pubic for 6 years and I don't see how Botox would be beneficial. You may get some benefit from a low dose of an anticholinergic if you are experiencing bladder spasms and want to maintain some bladder volume. Even then, maintaining bladder volume is questionable.

              Seek out a neurogenic bladder specialist for help with this.

              All the best,
              GJ

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                #8
                I took Ditropan for years without any problems but two years ago I started having increased bladder spasms which caused me to leak out around my stoma. My dosage was increased up to three times my original dose, but I still leaked like a sieve. I went on Myrbetriq and the leakage slowed a bit, but did not stop. I eventually started using the Duette catheter, which helped, but still has not stopped my leaking around the stoma. Treeza04, was the SP user who told me they use Ditropan and got botox to manage their bladder. And my former urologist who moved to practice in Columbus Ohio said that it would be beneficial in my situation and if I had a roadworthy van, I'd drive the 2.5 hour trip to their urology group to have it done. (I don't trust my 26 year old exonoline to drive more than 20 miles from home)

                I have also tried Vesicare to no avail as well. I have been doing bedrest since February of 2014 due to pressure sore problems and the constant leaking bladder has exacerbated the problem. My current urologist has essentially done nothing to help me. I plan to call urologists in the area to find one who will actually try something instead of doing the equivalent of shrugging his shoulders.

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                  #9
                  Yup - I have a SP and get Botox. I also cap off my SP and empty my bladder every 2 hours. I know this is NOT the way that most on this forum do it. When I leak I do not leak from my stoma, the leakage comes from the urethra. When I first got my SP, back in 2011, I had stoma leakage which lead me to gradually increase the size of my cath to a 24, which is where I am now, with no leakage from the stoma. I have recently been having leakage, from my urethra, which has lead me to my next round of Botox. Urine culture was done and no UTI, so I am set for Botox and possible stone ablation on October 6.

                  Scott - if you are leaking from your stoma, have you tried increasing the size of your cath? Good luck in your search for a solution!

                  Treeza

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                    #10
                    Originally posted by Treeza04 View Post
                    Yup - I have a SP and get Botox. I also cap off my SP and empty my bladder every 2 hours. I know this is NOT the way that most on this forum do it. When I leak I do not leak from my stoma, the leakage comes from the urethra. When I first got my SP, back in 2011, I had stoma leakage which lead me to gradually increase the size of my cath to a 24, which is where I am now, with no leakage from the stoma. I have recently been having leakage, from my urethra, which has lead me to my next round of Botox. Urine culture was done and no UTI, so I am set for Botox and possible stone ablation on October 6.

                    Scott - if you are leaking from your stoma, have you tried increasing the size of your cath? Good luck in your search for a solution!

                    Treeza
                    I was using a 22fr before I switched to the Duette. Currently they only have a size 18fr. They are supposed to be releasing a 20fr in a month or so if testing goes well, I'm going to give it a try.

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                      #11
                      "Capping" foleys only INCREASE likelihood of leaking, thru stoma, urethra, or both. The bladder wants to empty with the inserted foley, so when it's obstructed (or intentionally capped) it will try to force the urine out through any way possible to decrease risk of increasing AD and reflux.

                      In capping, you are increasing the risk of leaking or possibly causing it, and at the very least, you are exacerbating the leaking if you already leak.


                      An analogy would be -
                      certain foods give you heartburn, but you continue eating those foods and you take heartburn meds to help relieve the heartburn pain, so you can keep eating the foods that give you heartburn, and then take more pills to help the increasing heartburn... and so on.

                      Stop eating the foods that give you heartburn, you eliminate or DECREASE the need for heartburn pills.

                      Of course, neurogenic bladders aren't so simple or clear cut, but do you get the point?

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