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To botox, or not to botox? Is that the question?

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  • To botox, or not to botox? Is that the question?

    Since my discharge in July, my bladder has continued to be wonky and unreliable. Aside from cathing every 4 hours (and even then, I'm still constantly incontinent), I don't know what else to do.

    I found out on Monday through my neurologist that the dr. who interpreted the urodynamics recommended botox...my physiatrist never mentioned that to me and when I brought it up to him at my follow-up yesterday, he was like "oh yeah, he did say that."

    Anyhow, as I wait to see the urologist, it seems that all 4 of my doctors (PCP, Neuro, Physiatrist and Urologist) are pushing the botox. It's an out of pocket expense and if my funding-source won't cover it, I won't be able to have it. I want to know for the rest of you, if you were constantly incontinent (yes I'm on meds--detrol and Elavil), which of the other options would you use for second choice? Just want to go to the appointment armed with some information.
    Disability Humor

  • #2
    4 doctors are pushing it? I am not sure if anyone else has any better ideas but if the medical people say it will work it is worth it.

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    • #3
      We consider Botox when all other usual measures for dealing with instability (leakage) and high pressures fail. This would include all the appropriate anticholergic medications, alone or in combination, as well as imipramine, cutting out caffeine, and being sure that cath volumes are not too hight. Botox is expensive if not covered by your insurance, but can last for up to 18-24 months for some before needing to be redone. We consider this the last stop before going to the more extreme measure of doing a bladder augmentation surgery.

      Use the terms "bladder" and "Botox" in our search feature here and you will find many previous discussions of experiences with this option.

      (KLD)
      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
        don't stall get botox asap. it's temporary so no harm if it doesn't work. In canada, it's about $1200 and well worth it. if you wait too long then your bladder may become fibrotic and then you are looking at an augment. if i could turn back the clock to where you are, i'd strip naked and ask when can the botox procedure begin. PM me if you have questions.

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        • #5
          ...and can it hit that fast? I'm only 7 months post-injury. I have no doubt that it should be effective, the problem is that I can't pull money out of a hat, either. If I could, I'd say lets do it...but my children need to eat...

          My cath volumes are almost never above 300, I've been chronically dehydrated, because drinking doesn't increase the volume, it increases the frequency. Short of getting into bed every 1.5-2 hours, I don't know what else to do.

          Thanks for the tip to search the forums, not sure why I didn't think about that in the first place.

          Have a good night.

          ...I will not augment, I will NOT augment, I will not augment...
          Last edited by Khaleeka; 10-03-2009, 02:21 AM. Reason: forgot to add my mantra...
          Disability Humor

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          • #6
            I love the Botox injections. They wear out in less than 1 year, in me, though. I wish they lasted up to 2 years!! Nothing has improved my post-sci experience as much as Botox in my bladder, frankly.
            "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
              I really hope that I can pull the funding for this! Anyhow, I guess I shouldn't put the cart before the horse and wait to see what happens when I see the urologist...though there seems to be a unanimous "do it!" among them.

              What's the common way of controlling the pain for this? Do they tend to prefer epidurals over general anaesthesia?
              Disability Humor

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              • #8
                I've been getting botox for a few years not. Usually having it redone every 6-7 months. Pretty easy procedure for me. I don't have any sensation so don't feel any pain from it. They do put some stuff in my bladder for 20 minutes to numb it & then the botox itself doesnt even take 5 minutes. Afterwards I go on with my day like nothing even happened.


                My insurance has always paid for it.
                Life is like a box of chocolates, you never know what you're gonna get.

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                • #9
                  Khaleeka, I've been getting B for a few years, I believe it helps. Let me know if you need help with applying for funding or write request letters.
                  "Always look at the bright side of life...."

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                  • #10
                    ChinaDoll,

                    I am in Ontario and waiting for Botox (should happen in one month). I have to pay for it though, about $1300. My insurance doesn't cover it.

                    How did you get it covered? What's this about writing letters?? My docs have never told me about applying for coverage?

                    Any help appreciated.

                    Jason

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                    • #11
                      Originally posted by karupt411 View Post
                      ChinaDoll,

                      I am in Ontario and waiting for Botox (should happen in one month). I have to pay for it though, about $1300. My insurance doesn't cover it.

                      How did you get it covered? What's this about writing letters?? My docs have never told me about applying for coverage?

                      Any help appreciated.

                      Jason
                      Hi Jason, if Botox was deemed for medical use by a Urologist, Alberta Health coverage will cover it. I'm a squeaky wheel. if i don't get what i need, I squeak louder. I write letters to agencies, doctor and health care places to explain my need for it. Get your local Canadian Paraplegic Client Service coordinator to write a letter of support. (That's what I do for the CPA clients here in Edmonton.

                      I think it never hurts to ask. There are always exceptions to rules and regulations.
                      Last edited by ChinaDoll; 10-05-2009, 09:04 PM.
                      "Always look at the bright side of life...."

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                      • #12
                        Thanks China, I will definitely look into that...I think I was a close-second to Niagara Falls for fluid output (sigh)...where there's a will, there's a way...just tired of having to fight to get everything.

                        ...and while I have your attention, was just turned down for a Cat C...only approved for B. They are appealing it but in the meantime, am looking into a loan.
                        Disability Humor

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                        • #13
                          In my ever ending search for a bladder spasm medication I have tried almost everything on the market and just recently started taking Toviaz (fesoterodine fumarate) I take two of the 8mg a day and I have cut down on my leaking to nearly zero and reduced the number of times that I have to intermitently cath in half. The stuff is not cheap but my insurance pays all but about $65.00 U.S. so that helps but you can go to Pizers website and I believe you can request a free sample or maybe your Urologist can obtain a free sample for you. Whatever you decide good luck as leaking has been one of the biggest issues that I have had to address in the 7 plus years of this new life.

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                          • #14
                            botox

                            fyi after our first round of botox injections for the bladder we have no change in leakage what we did experience though is AD for the first time since the accident and pretty severe with less servere episodes since.....very scary. would have liked to try a second round of botox with a higher dosage and possibly more injections but we are now worried about AD. damned if we do damed if we don't

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                            • #15
                              Sorry to hear about that, new dimension. I have a friend who recently received 4 vials of botox for spasms in her legs...ended up with worse spasms and botulism...go figure!
                              Disability Humor

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