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Thread: Bladder Botox

  1. #1

    Bladder Botox

    I'm finally getting Botox injections on the 16th. I was in the hospital a couple weeks ago with another ileus and a uti that required IV antibiotics. (weird coincidence) Anyhow, I have been wanting to get with a different urologist for more than a year but life has gotten into the way. Serendipitously, the urologist that I was wanting to go to was the doctor on-call at the hospital and I was able to make the switch. I told him that my other urologist wouldn't even consider botox and brushed off anything else that I mentioned to help with my bladder function/health. His NP urged me to do irrigations, and the doctor was more than ready to do Botox for my leakage around my sp stoma.

    Anyhow, for those of you who've had it done, what should I expect? I'm having it done at the hospital in case of AD, but what else do I need to know? Procedure length, time it takes to take effect, how long it lasts...

    Thanks...

  2. #2
    I am seven and a half years post-injury, C7 complete. I've had bladder Botox done 6 or 7 times. For me it last about 8 months. I think the procedure takes less than an hour though counting anesthesia recovery time it might be more than that. I've never had any sort of complications from the procedure. It helps control my bladder within a couple of days and I seem to reap the full benefits of the procedure by about 10 days afterwards. Usually, by the time I'm having it done I really need it, and my cath volumes are down to about 150 or 200 mL. Afterwards my cath volumes are over 500 ml without discomfort and zero leakage no matter how long I wait.

  3. #3
    Senior Member
    Join Date
    Feb 2011
    Location
    Washington DC area--------------------T3 complete
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    YEAH!!! So glad for you Scott, I know you have been trying to get Botox for quite a while. I have had great success with Botox and Oxybutnin combination. The first time I had it, it lasted about 9 months. On subsequent treatments it has varied in times. I was at one point thinking I was becoming resistant as it seemed to wear off within 4 months once. The last time I had it has been 10 months, so my faith in it has been restored. For me, it works within days. Wishing you all the best for a successful treatment!!!

    Treeza

  4. #4
    Do those of you who use botox use medications as well? Or use those medications just to "bridge" until the botox kicks in?

  5. #5
    I've had Botox injections in the bladder several times now. My shots too seem to last about 8 months. The procedure took about 1/2 hour or less. I didn't feel the need to go under anesthesia because I have no feeling below my injury level. My urologist agreed. Makes it interesting to be able to watch and talk to him while he's doing the injections. You should have no problems and you'll enjoy the results.
    DaDutchman
    C5/C6 since 2007 due to car accident

  6. #6
    I'll give you my experience as a T8 complete intermittent cathing dude with a jacked up bladder.

    Botox was like heaven the first time. It was okay the second time and the third and the forth time it made no friggin difference whatsoever (I was hoping third time was a fluke, hence I tried the fourth time).


    My experience may be different than others, because I'm a little cowboyish with medical procedures and whatnot, and the whole no-anesthesia thing is definitely not for you if you've got any sensation (or think you might have any sensation). I've seen my spinal cord on MRI, it just stops at a certain level, below T11 I guess it just atrophied away to nothing and I've never had any indication of anything other than complete injury.

    First time was in an outpatient procedure room at the urologists office, tucked in the bottom floor of a rehab hospital. They wanted to do "light sedation" whatever the hell that means, but I was like "Nah, bruh, like I'm pretty sure I'm good". The urologist just shrugged, but the anesthesiologist felt like she wasn't going to be doing much I guess and said she at least wanted to dose me up with some benzos and be ready to knock me out if something went wrong. I told her she was welcome to knock me out if I suddenly had sensation, and when I woke up I would kiss the goddamn urologist on the lips because somehow I had sensation to my dick which I haven't had in years, but please don't give me any benzos.

    But on to the less unique parts of my experience. You get wheeled back into a procedure room, they strip you down and sterilize your junk. They transfer you onto a big old procedure table with a bunch of monitors. (probably at this point they're going to anesthetize you unless you convince them to keep you awake (if you're interested, the term to use is "I think the risks outweigh the benefits of anesthesia doc, don't you?", obviously only if you're sure, sure you're complete or want to find out in a potentially terrifying tortuous way that you're not). After they (presumably) knock you out, the doc rams a scope up your urethra (very similar to the scope they use to inspect your bladder with a camera if you've ever had one of those). The scope has a camera and a needle. The scope inflates your bladder with water. Then they jab the needle into 20 or 30 spots in your bladder and inject a little botox. If nothing is too complicated this probably takes 20 minutes. The first urologist I had turned their secondary monitor around so I could watch what he was doing... he's a cool guy in my book for that one. After injecting the botox they drain your bladder and (I would presume) proceed to wake you up. If you have sensation I'm sure they inject lidocaine or something to numb the pain, I think they might have even done this for me, even though I told them it was kind of pointless, don't remember too much on that part.

    Second urologist I did it with did it in a hospital operating room, but everything was pretty much the same with a few extra people looking at my junk and a longer wait time before getting to the actual procedure.

    Recovery is basically just waking you back up and sending you on your way. CATH BEFORE YOU LEAVE. My bladder was spasming like a madman for the first couple days and it held almost no urine at all for 4 or 5 days, then about 10 days after the procedure I suddenly realized that my bladder that used to spasm when it hit around 100 ml and leak all over the place was holding 500, even 600 ml without leaking and this lasted for a good while, almost six months if I remember correctly. Oh and your urine is going to be bloody for a couple days. Don't freak out, that's normal you just got dozens of holes jabbed into the muscle of your bladder.

    The second time around it was very similar, but the effect was not quite as robust and wore off after 3 or 4 months. Sometimes I wonder if it was because the botox let my bladder get distended too far because it was too relaxed. I know a couple times I was a bad boy and drank too much beer and cathed 700 plus ml, that was surely doing some kind of damage. Still it seems that most people have similar poor responses after a few good ones.

    The third time I still had the freaking out spasming bladder for a week, but it just never seemed to get better. It was like I went from freaking out, spasming bladder to bladder that just doesn't hold more than 100 ml like I was a year before. I think this time the doc had cut back from 30 to 20 jabs for some reason. I thought maybe it was a fluke or maybe I'd had a subclinical infection after the injections or maybe 20 was too few to get a real effect or maybe the urologist had just messed up, but I never got back to holding an acceptable amount of urine.

    The forth time around I figured we'd try 30 jabs again and see what effect I got. Again it was like I hadn't done anything, except for the first week I was leaking all over the place like crazy. Once the spasming from getting jabbed wore off it was my same old busted bladder that couldn't hold anything.

    I figured I was done after that, went to condom caths (luckily my pressure is low enough) and still intermittent cathing 4-5 times per day because I feel like that's probably a good thing.

  7. #7
    Thanks for the info everyone. I'm going to be put under because I get more AD over bladder issues than anything else. And unless my doctor tells me specifically not to, I'll take my Myrbetriq regularly.

    Strangely, when he told me that we were going to do Botox, my bladder quit leaking... until just an hour or so. lol

  8. #8
    I had two weeks of no leaking after my botox. Then I went back to somewhat frequent leaking. A few weeks ago my urologist had me taking Ditropan again along with my Myrbetriq. It lessened the leaking but not completely so I'm going to have more botox.

    If this doesn't work, I'm not sure what to do.

    I asked the urologist about the SP tightening surgery but he said that it didn't work. Then said that going to a smaller catheter might cause the stoma to shrink. The thing is, I used a 22fr from 1997 to 2015, to an 18fr Duette. I've been using that 18fr for three years and I'm still leaking, so I'm guessing mine isn't going to shrink tight enough for an 18fr. I have been waiting for Poiesis to make a 20fr for 3 years but they keep postponing its release.

    I need a fix for this... I can't keep waking up in a soaked bed.

    Anyhow, more botox Wednesday morning. (the most that can be used in a three month period) Wish me luck.

  9. #9
    I didn't get my botox on Wednesday due to getting diarrhea during the night and didn't want to gamble on whether it was over when my caregiver came in at 4 a.m.

    Anyway, I called the office to ask if instead of getting a follow up dose (the max for 3 months) we could wait until mid August so that I could get a full max dose. I hope to hear back from them tomorrow.

    My question is, if a maximum dose of botox plus a max dose of Myrbetriq plus 5 mg's of Ditropan doesn't solve my leaky bladder, what options are left?
    (I don't want to take more Ditropan if possible)

    I can't keep dealing with this problem!

  10. #10
    Have you looked at the timing of when you take your medications? That may help a little.
    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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