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    Bladder Botox

    Hi, I have read a lot of posts on bladder botox, but haven’t found exactly what I am looking for…
    My injury is C2-T2 spinal cord infarction from spinal cord stroke. ASIA D. Pretty close to AB function. 5 years post. I have bladder urgency and have tried all the drugs and the implanted stimulator. I am currently on Toviaz and Tofranil. I do not cath.
    I have been thinking that instead of living my life 5 feet away from the bathroom at all times, I would try to put my bladder on lockdown with botox and cath. I spoke with my Urologist and she said she thinks I can have a lose dose injection of the botox (I think she said 100) and probably not need to cath. I didn’t think that was even an option.
    So my question to you guys is… has anyone tried a low does of botox? What was your experience? Any opinions?
    Thanks.

    #2
    I usually don't cath but with the Botox I have to. I got 30 injection last July and it is still working. I am not sure if I want to do it again because I prefer not to cath and do it the normal way. And since I live in Norway and they don't give anything before the injections, it was a painful hour.
    TH 12, 43 years post

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      #3
      Thank you for your response. Did all of your urgency totally go away? No more accidents? Just the burden of the cathing process?

      I am having a really hard time deciding. I hated cathing when I had to do it, but after 5 years of always being stressed about an accident and all the embarrassing times it happens, the memory of cathing has faded I think.

      Comment


        #4
        In the beginning all the urgency was gone. After a few month I could feel my needs. But no accidents at all. I had my first accident two days ago taking a 10cm curb after 5 pints of beer and no accessible bathroom.
        TH 12, 43 years post

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          #5
          Couple follow up questions for everyone…
          1. I don’t get UTIs now. I assume the Botox will mean I will have UTIs because I will be cathing and when I cathed when I was first injured I had a problem with them. When I have a UTI will I leak? Or do you not leak because of the Botox?
          2. I read in a post that Botox can be injected in the pelvic floor or the bladder. What is the difference for results?
          3. Is there any issue with pregnancy and having bladder Botox?
          Thanks All.

          Comment


            #6
            You cannot get botox when pregnant as far as i know.
            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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              #7
              Well I had 100(cc?) of botox in 20 injections under anesthesia yesterday. So far I am still urinating on my own. I know there are some other incomplete members with similar issues to mine on the forum, so I will keep you informed on how it works for me.

              Comment


                #8
                It takes some days before it is working. But I would really like to know if you have to cath after 20 injection. I have a new appointment with the urologist 20th of August, I don't even know if I would do it again.
                TH 12, 43 years post

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                  #9
                  Can someone tell me how many days after treatment until bladder botox is supposed to be at its full effect? I had it 7 days ago. I am still urinating on my own, but I also have had some episodes of urgency… though it seems to be less often, I am not sure if it has improved enough to change my quality of life.

                  Thanks for the info.

                  Comment


                    #10
                    7- maybe 10 days. And did you empty on urodynamics? what is your PVR?
                    Capacity?
                    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.

                    Comment


                      #11
                      Oh and there is a new med coming out possibly in the FALL f2012 or OAB!!!
                      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.

                      Comment


                        #12
                        Originally posted by SCI-Nurse View Post
                        Oh and there is a new med coming out possibly in the FALL f2012 or OAB!!!
                        CWO
                        New med? Oral or injectible? Please elaborate.
                        stephen@bike-on.com

                        Comment


                          #13
                          I’m not sure what my capacity is and not sure what PVR is. Since I didn’t have retention before the botox, my Urologist did/does not have me do urodynamics yearly. I did have it 1 year after my injury when it was determined that I emptied completely at low capacity.
                          My issue is that whenever I walk more then 15 feet, my bladder releases and since I am a full time walker that is a lot of hurried trips to the restroom.
                          Please elaborate on the new med. I would love more information!
                          Today is day 8 and I am still urinating on my own and I did not have any urgency issues today. I have however conditioned myself over the last 5 years to use the restroom whenever I start moving around, so it is sometimes hard for me to tell if I am doing better or if I am just better at dealing with it. I don't move around much at work, and I have been at work all day. I'll keep you all updated.
                          Woman from Europe it might be worth trying the lower dose in your case. I believe it would be 1/3 of what you received with 30 injections.

                          Comment


                            #14
                            In my case the neurourologist is a grumpy, old man and the only one in Norway who is doing it. I think he will at least listen to what I say, and do what he want.
                            TH 12, 43 years post

                            Comment


                              #15
                              I found information about a new drug called Myrbetriq. That may be what CWO was refering to.

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