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  • Botox in the Bladder

    Just wanted to share that recently I got 200 units of botox injected into my bladder by my urologist (I am a t-6 para, 30 years post-injury) and it is AWESOME! I can sleep through the night and go long periods of time before having to cath with no urgency or leakage. I highly recommend looking into this procedure for anyone who has to do intermittent cathing.

  • #2
    Worked great for me for a couple years, then stopped working. I'm in a clinical trial now for a device that delivers an anticholergenic (trospium) directly into the bladder, so it doesn't cross the blood/brain barrier. It is working very well.
    "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
      I have had success with it for 5 years now. Get a little revamp every 6 - 9 months.

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      • #4
        The first injection worked for 6 months. The second and third did nothing for me.

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        • #5
          I had similar results with the longevity of the Botox treatments. I had four treatments done each about 8 months apart. I couldn't tell I'd had a treatment after the fourth one.

          Oddity, it would be great if the trial you are in works out.

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          • #6
            Originally posted by gjnl View Post
            I had similar results with the longevity of the Botox treatments. I had four treatments done each about 8 months apart. I couldn't tell I'd had a treatment after the fourth one.

            Oddity, it would be great if the trial you are in works out.
            They have high hopes. It's been used to deliver chemotherapeutic drugs for years, so it's relatively well established as being safe. I'm only the 2nd person (of a required 6 for the phase) so it might be a while. The study schedule is very aggressive (3 visits a week for 42 days; 3 urodynamics tests, ugh, weekly blood draws, and keeping a bladder diary. Hard to find people willing or capable of doing it, but they're paying almost $1,000. Company is named Tardis.)
            "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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            • #7
              Originally posted by Oddity View Post
              They have high hopes. It's been used to deliver chemotherapeutic drugs for years, so it's relatively well established as being safe. I'm only the 2nd person (of a required 6 for the phase) so it might be a while. The study schedule is very aggressive (3 visits a week for 42 days; 3 urodynamics tests, ugh, weekly blood draws, and keeping a bladder diary. Hard to find people willing or capable of doing it, but they're paying almost $1,000. Company is named Tardis.)
              Sounds good Oddity. Will be interested in results / your opinion and hoping for the best.

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              • #8
                Originally posted by Oddity View Post
                Worked great for me for a couple years, then stopped working. I'm in a clinical trial now for a device that delivers an anticholergenic (trospium) directly into the bladder, so it doesn't cross the blood/brain barrier. It is working very well.
                You know, you're definitely not the first person on this forum to mention this. There is a theory which says that the nerve endings in the epithelium are especially adept at creating new pathways. So you get the Botox injected, but your bladder "learns" to grow nerve endings around it; sounds a bit like a mechanism to build resistance.

                Anyhow, I've had the injections done twice with high levels of success with both. I space the injections out in an effort to see if this retards my bladder's ability to build resistance. So, I'll get the injections, they'll last like 10 months, and then I'll go back onto Ditropan for like half a year and get the injections again. Not sure this makes any difference, but the injections have made such an improvement in QOL, that I don't mind taking spreading the treatments way out, even if it helps prolong my bladders ability to resist the poison just a tad bit longer than otherwise.
                No one ever became unsuccessful by helping others out

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                • #9
                  Originally posted by Oddity View Post
                  Worked great for me for a couple years, then stopped working. I'm in a clinical trial now for a device that delivers an anticholergenic (trospium) directly into the bladder, so it doesn't cross the blood/brain barrier. It is working very well.
                  Wow, this is really interesting. How does it deliver it to the bladder?

                  I also had poor success with botox. One injection was amazing for almost six months, then a top up every 3 months was okayish, then it just didn't do anything for me.

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                  • #10
                    Originally posted by Oddity View Post
                    They have high hopes. It's been used to deliver chemotherapeutic drugs for years, so it's relatively well established as being safe. I'm only the 2nd person (of a required 6 for the phase) so it might be a while. The study schedule is very aggressive (3 visits a week for 42 days; 3 urodynamics tests, ugh, weekly blood draws, and keeping a bladder diary. Hard to find people willing or capable of doing it, but they're paying almost $1,000. Company is named Tardis.)
                    Sounds interesting and I got super excited about it until you said 3 visits a week... that's nuts... but the company name is acceptable.

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                    • #11
                      Originally posted by funklab View Post
                      Wow, this is really interesting. How does it deliver it to the bladder?

                      I also had poor success with botox. One injection was amazing for almost six months, then a top up every 3 months was okayish, then it just didn't do anything for me.
                      It's a little device loaded with medicine, shaped like a tiny pretzel (it goes in straight but assumes it's shape once released). Put in with a cystoscope. Somehow it time releases the substance but I dunno how. It's been in use for a while, for bladder cancer and other issues, so there is probably some literature out there about the specifics.

                      eta: https://m.medicalxpress.com/news/201...treatment.html
                      Last edited by Oddity; 09-23-2017, 12:52 AM.
                      "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

                      Comment


                      • #12
                        Originally posted by funklab View Post
                        Sounds interesting and I got super excited about it until you said 3 visits a week... that's nuts... but the company name is acceptable.
                        Yeah, it's an aggressive schedule. Looking through my paper work a few of them are actually just over the phone and others are just to drop off diary and 24hrs of collected urine and say "Hi" to the doctor. Only one a week is an actual "visit", with blood sample, ultrasound, or urodynamics.

                        eta: Autocorrect switched the name on me. It's Taris, not Tardis.
                        Last edited by Oddity; 09-23-2017, 12:55 AM.
                        "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

                        Comment


                        • #13
                          Originally posted by Oddity View Post
                          Yeah, it's an aggressive schedule. Looking through my paper work a few of them are actually just over the phone and others are just to drop off diary and 24hrs of collected urine and say "Hi" to the doctor. Only one a week is an actual "visit", with blood sample, ultrasound, or urodynamics.

                          eta: Autocorrect switched the name on me. It's Taris, not Tardis.

                          After a couple weeks of pre-implant monitoring I went for the device today. Complete failure. The insertion method doesn't account for high necked bladder (like why someone would use a coude tip) and they couldn't get it in.
                          "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

                          Comment


                          • #14
                            Originally posted by ThinkerGirl View Post
                            Just wanted to share that recently I got 200 units of botox injected into my bladder by my urologist (I am a t-6 para, 30 years post-injury) and it is AWESOME! I can sleep through the night and go long periods of time before having to cath with no urgency or leakage. I highly recommend looking into this procedure for anyone who has to do intermittent cathing.
                            What is the reason for the treatment? To help with leakage or for those who don't want or can't tolerate Ditropan or similar?

                            Comment

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