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Thread: Bladder botox pros/cons/necessity?

  1. #1
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    Bladder botox pros/cons/necessity?

    I know there've been a bunch of posts on this topic before, but I didn't see anything at a glance related to my specific situation: my urologist isn't recommending botox to me for bladder control, but to prevent future kidney disease, and I'm curious what folks (and the SCI nurses here) think of this.

    I had a urodynamics done two years ago which showed good pressures up until ~330cc, with borderline compliance at 15.5, and another one done again recently, with similar numbers: pressure starts to build up around 300cc, and compliance around 14 (which my doc said isn't a notable difference and can essentially be considered the same as two years ago).

    However, this year, she suggested that I start doing botox to lower the risk of kidney disease/damage in the future, since botox would help reduce bladder pressures (and increase compliance), recommending injections every 3 months. Alternatively, if I don't want to go the botox route yet, she said I should move forward with annual urodynamics.

    What do folks think of botox for this reason? I'm a little hesitant because not only does it seem like a huge hassle (admittedly, less a hassle than kidney damage), I imagine it'd be a little costly as well (probably less so since I likely won't need anesthesia since I haven't needed it for cystoscopies at T-11/T-12). But annual urodynamics also sound like a hassle, and I'd like to reduce my exposure to X-rays as well.
    Last edited by faji_tama; 11-03-2018 at 11:49 AM.

  2. #2
    Quote Originally Posted by faji_tama View Post
    I know there've been a bunch of posts on this topic before, but I didn't see anything at a glance related to my specific situation: my urologist isn't recommending botox to me for bladder control, but to prevent future kidney disease, and I'm curious what folks (and the SCI nurses here) think of this.

    I had a urodynamics done two years ago which showed good pressures up until ~330cc, with borderline compliance at 15.5, and another one done again recently, with similar numbers: pressure starts to build up around 300cc, and compliance around 14 (which my doc said isn't a notable difference and can essentially be considered the same as two years ago).

    However, this year, she suggested that I start doing botox to lower the risk of kidney disease/damage in the future, since botox would help reduce bladder pressures (and increase compliance), recommending injections every 3 months. Alternatively, if I don't want to go the botox route yet, she said I should move forward with annual urodynamics.

    What do folks think of botox for this reason? I'm a little hesitant because not only does it seem like a huge hassle (admittedly, less a hassle than kidney damage), I imagine it'd be a little costly as well (probably less so since I likely won't need anesthesia since I haven't needed it for cystoscopies at T-11/T-12). But annual urodynamics also sound like a hassle, and I'd like to reduce my exposure to X-rays as well.
    This article maybe of interest to you. The entire study is printed here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4777792/

    How botulinum toxin in neurogenic detrusor overactivity can reduce upper urinary tract damage?
    Maximilien Baron, Philippe Grise, and Jean-Nicolas Cornu

    ABSTRACT
    In
    tradetrusor injections of botulinum toxin are the cornerstone of medical treatment of neurogenic detrusor overactivity. The primary aim of this treatment is to ensure a low pressure regimen in the urinary bladder, but the mechanisms leading to long-term protection of the urinary tract remain poorly understood. In this paper, we highlight the potential benefits of intradetrusor injections of botulinum toxin regarding local effects on the bladder structures, urinary tract infections, stone disease, vesico ureteral reflux, hydronephrosis, renal function based on a comprehensive literature review.

    CONCLUSION
    Botulinum toxin injections regulate urodynamic parameters in a context of neurogenic OAB. It furthermore may have a positive effect on UTIs, but this has to be put in perspective with the increased use of CIC. There is also an anticipated positive effect of BoNTA injections on hydronephrosis, VUR and stone disease, but with a weaker level of evidence. Long term effects on renal function are also probably positive, but this parameter remains multifactorial.








  3. #3
    I don't know what her experience is and for how long. But several our our patients after botox from 3-12 times, now find it not effective. 45 years ago kidney disease whas the cause of death and renal dialysis. If you get yours checked and the pressure is good or even if not- take meds first then Botox if those don't work .
    Due to testing with UDS and not recommending crede" voiding(pushing/straining) renal damage is rarely seen.I think you need a second opinion of you can google for specific recommendations. Was your voiding pressure ( highest pressure when the bladder is having a contraction). Compliance is the filling pressure. But if voiding pressure is high then cath before that amount or meds or Botox.
    Yes, it is important to keep your pressures low so urine doesn't back up the ureters into the kidneys where if the kidneys sit in urine you start to lose kidney function(called hydronephrosis).
    Urodynamics shows increase in pressure before this is seen on x-rays (similar to blood pressure and heart disease).Medications such as Trospium or Myrbetriq can relax and lower the pressure. Botox only used if that doesn't work or side effects to the medication(s).Renal ultrasound and abdominal KUB and Basic Metabolic panel blood test for kidney function should all be done yearly. KUB is to look at see if any bladder stones. Some do a cystoscopy but not necessary unless there is an issue or blood in the urine, frequent infections or yearly if the person has an indwelling catheter a(cysto with bladder washing) after several years of having an indwelling Also higher in those that smoke.
    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.

  4. #4
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    Quote Originally Posted by SCI-Nurse View Post
    Was your voiding pressure ( highest pressure when the bladder is having a contraction). Compliance is the filling pressure. But if voiding pressure is high then cath before that amount or meds or Botox
    I'm not sure if we got the voiding pressure (though I do remember them asking me to crede a few times). Asked them for the results and this is what I got, but it doesn't sound like any of these, right?

    Fill rate: 20 ml/min --> 30 ml/min
    First sensation: 407 ml
    First desire to void: 407 ml
    Strong urge: 482 ml
    Bladder capacity was: 500 ml
    Bladder was filled to: 482 ml
    Compliance was borderline (14)

    The vesicle pressure rose from a baseline of 16 cm H2O to 50 cm H2O at a volume of 482 ml.

    An uninhibited detrusor contraction did not occur.

    Resting urethral pressure during fill was 80 cm H2O.

  5. #5
    None of these are voiding pressures. I would recommend a second opinion and consider other medications before I would go the botox route. Either way, I would recommend that you get annual urology studies to keep an eye on what is going 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.

  6. #6
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    Quote Originally Posted by SCI-Nurse View Post
    None of these are voiding pressures. I would recommend a second opinion and consider other medications before I would go the botox route. Either way, I would recommend that you get annual urology studies to keep an eye on what is going on.
    ckf
    When you say urology studies, do you mean the ultrasound, blood tests, and KUB that CWO recommended above, or would you two include urodynamics as well? (Or is that more a once every few years kind of thing?)

    Also, is crede voiding only an issue if it happens when your bladder is full? I seem to recall that as long as you empty first before valsava for bowel movements, you should be okay.

    Lastly, I figure I'd ask, but does anyone have recommendations for SCI urologists in SF / Bay Area? The one I've been seeing so far is Anne Suskind

  7. #7
    Urology Studies to me includes all of the above and urodynamics. Given that they are concerned about yours, I would say every year for you. For someone who is doing ok, every other year.

    We generally do not recommend crede at all. There is no telling what pressure against the ureters will do. It only takes one time to get the kidneys infected.

    Not familiar with the SF Bay area. Sorry that I can not help on that one.

    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.

  8. #8
    Anne Suskind at UCSF (University of California San Francisco) should be plugged into the staff of neurourologists at UCSF. Emil Tanagho is or was at UCSF. He's the "father" of working to develop a bladder pacemaker. So there are associates of Suskind and Tanagho at UCSF to consult.

    Otherwise there are two urologists who are or have been associated with Stanford Medical Center.

    Craig V. Comiter, MD


    Professor of Urology and, by courtesy, of Obstetrics and Gynecology at the Stanford University Medical Center
    1000 Welch Rd Ste 100 Palo Alto, CA 94304 Tel (650) 723-3391 Fax (650) 724-9608

    Dr. Craig Comiter specializes in the treatment of women with pelvic organ prolapse and complications from mesh surgery, and in the treatment of women and men with urinary problems including urinary incontinence, benign prostatic hyperplasia, overactive bladder, urinary retention, and neurologic problems involving the bladder. He has practiced neurourology for more than 18 years. He has been the Principal Investigator on numerous clinical trials regarding the treatment of male and female urinary incontinence, overactive bladder, neurogenic bladder, and interstitial cystitis. He is the Clinic Chief for Urologic Specialties, and the Director of the Stanford Program in Female Pelvic Medicine and Reconstructive Surgery. He has served on the Board of Directors for the Society for Urodynamics and Female Urology, and has had leadershiop roles in the Western Sectional and National American Urological Association.

    Christopher K. Payne, MD
    Vista Urology
    2998 South Bascom Avenue Suite 100
    San Jose, CA 95124
    Phone: 650-996-3761

    Clinical Interests
    Male and Female Urinary Incontinence
    Urodynamics
    Interstitial Cystitis
    Pelvic Prolapse
    Neurogenic bladder
    All types of pelvic reconstructive surgery with emphasis on native tissue repairs
    Dr. Payne has a special interest in obstetric fistulas in the developing world. He has made several trips to Africa for treatment and research on this problem and was elected President of the Board of the Worldwide Fistula Foundation in 2017.

  9. #9
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    Thanks for the recs gjnl! Dr Comiter was actually my urologist before I switched to Dr Suskind, partly because of distance, and partly because his practice didn't really follow best practices (i.e. recommending a short course of antibiotics for asymptomatic UTIs without doing a C&S first). I think Dr Payne worked alongside him for a while, so I've seen him as well, but I could probably bring ask either of them for a second opinion anyway. That said, if CKF's recommendation for annual studies includes UDO anyway, I might as well just go that route + medication.

    Quote Originally Posted by SCI-Nurse View Post
    We generally do not recommend crede at all. There is no telling what pressure against the ureters will do. It only takes one time to get the kidneys infected.
    Ah, yeah that makes sense. I was asking more because I valsalva for bowel movements and wonder whether or not that poses a risk for my kidneys, even with an empty bladder.

  10. #10
    Quote Originally Posted by faji_tama View Post
    Thanks for the recs gjnl! Dr Comiter was actually my urologist before I switched to Dr Suskind, partly because of distance, and partly because his practice didn't really follow best practices (i.e. recommending a short course of antibiotics for asymptomatic UTIs without doing a C&S first). I think Dr Payne worked alongside him for a while, so I've seen him as well, but I could probably bring ask either of them for a second opinion anyway. That said, if CKF's recommendation for annual studies includes UDO anyway, I might as well just go that route + medication.
    I think your experiences and similar experiences that I have had living in or in near proximity to a large metropolitan area with several major medical centers and teaching hospitals underscore just how difficult it is to act on the advice of not only "find a good neurourologist...but find one who specializes in spinal cord injury." Sometimes I wonder if there really is such a person and if they are rare in large cities, they are impossible to find in less populated areas of the United States, not to mention in other countries around the world.

    I saw Emil Tanagho during the Botox stage of my bladder management and while he was a caring, competent doctor, who understood neurogenic bladders, he wasn't there to manage my bouts with urinary tract infections. Diagnosis and antibiotic therapy were left to my primary care physician and eventually an infectious disease physician.

    Then when intermittent catheterization became impossible because I needed catheterization every 2 hours around the clock, I consulted with Christopher Payne. He was competent and thorough in explaining all of the major surgeries and procedures, he was not too supportive of trying a simple solution, like a supra pubic catheter that has worked great for me for about 7 years.

    I currently have a urologist, that was recommended to me by my primary physician. This urologist is willing to listen and accommodate my requests for ultrasounds, urodynamic studies, etc. But, he doesn't want to be bothered with urinary tract infections and antibiotic management and thinks my primary care and the infectious disease docs were managing just fine. Now this urologist is retiring in April 2019, and I am once again trying to find a doctor to understand the intricacies of the neurogenic bladder in spinal cord injury and manage all areas of bladder care. Thankfully, I have had very, very few urinary tract infections since having the supra pubic placed, thanks for the most part to my continued use of Mircocyn instillations.

    During a life threatening occurrence of hyponatremia a few years ago, I started seeing a nephrologist regularly, so I have someone who is on top of the health of my kidneys.

    Finding a urologist that you can manage to convince that you know a little more than the average person (and possibly even more than he or she does) about your bladder issues is a very difficult job.

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