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    Botox for bladder

    So after fighting bladder spasms for years, I’m finally trying Botox. Has anyone tried this before? I’m pretty excited about it actually. It sounds like it’s a pretty great deal. I’ll post results.

    #2
    You can find a plethora of posts about the process and other's results here in search results. Lots of history on the subject.

    I was one of the (many) Stage 2, then 3, clinical trial participants in using Botox for the bladder. It's efficacy faded for me after about a half dozen treatments over ~3 years., down from ~6-7 months (using 300units) to less than 2 months. Just a few weeks, really, after it started working (which can take a couple weeks itself.)

    Flash forward many years and I've recently had it done again, back in April. It's already starting to fade, unfortunately. So, resistance seems to last a while. Maybe permanent.

    If you don't develop resistance, and your insurance covers it, it's great. (Medicare covers some, up to 300units every 90 days, but most Uros around here don't accept Medicare assignment for Botox, so it costs ~$500 out of pocket for me. Not worth it for only a couple months at this rate IMO.)
    "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

    "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

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      #3
      Botox starts working in 7-10 days. It is done in a procedure room or possibly an OR. Minimal sedation if any. aD possible if level of injury t 6 or above. Urine must be totally clean. 20-30 injections in to the middle layer muscle of bladder. Person can become immune to it and is less effective, doesn’t last at least 5-6 months or doesn’t work at all. More research needs to be done on this and possible other products such as Dysport, Xeomin etc.. would work. CWO
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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        #4
        I'm kinda like Oddity, my Uro was in on the trials too, but I had to pass at the time, had to quit all bladder meds to get a baseline, and I was working at the time and was too worried about pissing myself at work.

        My first Botox treatment was F'ing great, doubled my holding capacity, then over time it just started to fade, never to zero, just less. My bladder has shrunk so much, down to 150-200cc that I keep getting Botox as well as meds to keep whatever I can get.

        Some people have had great continuous success, I hope you are one of them. It really can be a game changer.
        "a T10, who'd Rather be ridin'; than rollin'"

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          #5
          We need someone to do the research! Find the answer!
          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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            #6
            Well the results are great, but the process sucked. When I woke from the treatment, my cath was full of bright red blood that never stopped. The Urologist clipped my prostrate on the way in and my bladder filled with a gigantic blood clot that caused severe AD. They had to go back in and cauterize the bleeder leaving the cath in. Well then, the cath caused my blood pressure to crater to 55/37 and back to the ER and another 3 hour ambulance ride to a larger hospital because the PA in the ER thought I was having a heart attack and the hospital I was in couldn’t handle me. I hope it’s worth it because holy hell

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              #7
              Wow! Not much I can add. So sorry that you had this experience. My fingers and toes are crossed that things get smoother from here on.
              ckf
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                #8
                I had really bad bladder spasms for several years, and I mean that I leaked more around the stoma than drained through the catheter. A couple years ago I tried Botox and with 200 units it only kept me dry for two weeks. They gave me another dose later but it did nothing. I eventually started talking 50mgs of Myrbetriq at night and 4mgs of Toviaz in the morning and I have done well ever since. I hope you have better luck with it.

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                  #9
                  Yeah that’s where I was. The bladder spasms and ad were horrible. I was on myrbetriq and oxybutynin prior but they were barely working. Right now I’m trying just the Botox and oxybutynin so we’ll see. So far so good. I’ve never heard of toviaz.

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                    #10
                    Originally posted by Vike View Post
                    Yeah that’s where I was. The bladder spasms and ad were horrible. I was on myrbetriq and oxybutynin prior but they were barely working. Right now I’m trying just the Botox and oxybutynin so we’ll see. So far so good. I’ve never heard of toviaz.
                    I used to take 15mgs of Ditropan but it did nothing. Toviaz is relatively new. My urologist said that the Myrbetriq worked on either the top or bottom portion off the bladder white Toviaz worked on the other portion. I don't recall which did which but it was like turning a spigot off. If Botox fails you might mention it to your urologist. Good luck.

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                      #11

                      Just last week I had the max level of Botox injected into my bladder but unfortunately I believe I am becoming m to the Botox as the previous injections were only three months ago. My bladder has been extremely painful with constant spasms, greatly lessening the quality of my life as I’ve been in constant pain from the moment I wake up till I go to sleep. At this stage of the game, my injury was 26 years ago at C4/C-5, it looks
                      the only solution is to have the bladder diversion done. Unfortunately it will be another month until I can see a surgeon locally who does this type of surgery.
                      C4/5 incomplete, 17 years since injury

                      "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

                      "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

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                      • juniorsenior
                        juniorsenior commented
                        Editing a comment
                        have you tried all the different bladder medications already? sometimes in a cocktail (mixture)? surgery is always my last option. it took me a while to find a mixture that worked

                      #12
                      What is your cocktail junior?

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