botox for the external sphincter

[Danatorr]

Hi everybody,
Im new here and this is my first time visiting this website,and really glad I found it as it seems really helpful. I had surgery in my spinal cord about 5 years ago and since then, as a result of the surgery, I cannot urinate independantly and have to use catheters.My tests show that the reason for this is that my external sphincter is not relaxed and isnt opening, and my bladder is shrinking under pressure but not enough. My uro recommended to me botox injections for the external splinter and also taking pills for the shrinking of the bladder. This treatment is supposed to help me urinate independantly, without the need of a catheter. I wanted to ask if anybody has been through this procedure and if it has helped them, or if anybody knows of other treatments that are out there?..
Thank you all in advance.

[SCI-Nurse]

Hi,

I am aware of using botox in the bladder to increase bladder capacity, control leakage between catheterizations and cut down on number of catheterizations.

Your account above sounds like this is recommended to you so you wouldn't need to catheterize yourself but could toilet independently. Am I understanding you correctly? I am not aware of the indication you describe.

Anyone have experience with this?

AAD

[Danatorr]

"Your account above sounds like this is recommended to you so you wouldn't need to catheterize yourself but could toilet independently. Am I understanding you correctly?"


Yes, thats what I meant, the botox is supposed to paralyze the external sphincter so that it can relax and let me toilet independantly without the need to catheterize. Im catheterizing because my external sphincter is not opening and because me bladder isnt shrinking enough (the side effect of the surgery I had in my spinal cord a few years ago). The doctor told me that botox for my external sphincter with a combination of pills for the shrinking of the bladder might make me toilet independantly. Questions is, does anyone else here have any info or experience with this, or maybe can come up with questions that I havent thought of that I can ask my doctor regarding risks or better treatment?

[PMR DOC]

I wrote a review paper in 2003 on the use of botox for this while in residency. Try contacting Dr. Lindensmyer (a urologist) is at Kessler Rehab at West Orange, NJ. I believe he has done this procedure with very good results. To my understanding the treatment has two approaches. A blind approach and an
approach with cystoscopy. The blind approach uses needle EMG. Both are dependent obviously on the skill,anatomy knowledge, and experience with botox injections of the physician. Both approaches were shown to be equally efficacious.
I believe the most important goal here would not be to not need to catheterize necessarily, but to make catheterization easier. We need to protect the upper urinary tracts and kidneys.
I do not obviously know all of your details, but one option you may want to look in to, would be suprapubic catheters

[Danatorr]

Hi,
Thanks for the reply.
I use disposable catheters. I can feel the need to urinate but my sphincter wont open and my bladder doesnt shrink properly so nothing comes out. So everytime I feel the need to go I just use a disposable catheter. I havent heard of a suprapubic catheter, can you tell me about it? Anyway, this is why my doctor thinks that after getting a butox injection in my sphincter I will most likely not be dependant on catherization and will be able to go independantly.

[SCI-Nurse]

Danatorr,

Here are a few resources (picture) of a suprapubic catheter:
http://sci.rutgers.edu/forum/showthread.php?t=118500
and refer to "Bladder management for Adults with SCI" sticky at the beginning of this Care site.

In your situation, an sp tube would still cause the same risk for UTI and bladder cancer as an indwelling foley catheter into your bladder would.

Sounds like you may want to pursue further the original procedure you asked about. I will continue to look for info on this to enable you to toilet independently without an intermittent cath.
Are you working with a urologist who is experienced with spinal cord issues.
What have you been told by your doctors-do you have spinal cord injury? what level? Do you have a neurogenic bladder?

AAD

[twink]

My docor has also reccommened that botox injections to my bladder would be helpful to me. However, I was under the impression that it is not yet approved by the FDA. Is this true?
Thanks

[SCI-Nurse]

Hi,

As of late winter, I do not believe that Botox has FDA approval for use in bladder, however, some urologists usually at larger academic settings are doing clinical trials and using it in the bladder. While this is not a clinical trial report, you may find this small piece helpful.
http://www.everydayhealth.com/incont...ith-botox.aspx

AAD

[stephen212]

Many years ago I read mentions of "nonsurgical reversible sphincterotomies" wherein Botox injections into the external sphincter were used rather than cutting the sphincter, the effect of which is nonreversible. Sphincterotomies were performed then (and still?) for SCIs who lacked the manual dexterity to perform intermittent self-catheterization. The result of either procedure is that you are constantly leaking and require a leg bag to collect urine. I don't see how you would avoid leaking if you had Botox injections into your sphincter unless the amount can be so finely calibrated that it relaxes the sphincter rather than temporarily paralyzing it. It's not been my impression that the procedure is refined enough to dial in a predetermined amount of muscle weakening.

[Danatorr]

HI,
Thank you for all your responses and feedback!

"I will continue to look for info on this to enable you to toilet independently without an intermittent cath.
Are you working with a urologist who is experienced with spinal cord issues.
What have you been told by your doctors-do you have spinal cord injury? what level? Do you have a neurogenic bladder?"

Thank you so much. My urologist is a Neuro-Urologist. The reason I had surgery was because I had to have a non-cancerous growth taken out. It was situated at the bottom of my spinal cord, right where the nerves are. The chances for me even walking after this surgery was slim, but in the end the only major side effect of the surgery was being dependant on catheters and not being able to toilet myself independantly. The doctors dont know if this is because the nerves attatched to my bladder and the sphincter were completely destroyed in the process of surgery or if they are disfunctional due to other reasons as a result of the surgery. This was why I was excited about the botox treatment after hearing about it from this new Neuro-Urologist that I went to, which he was optomistic about assuming that the nerves controlling my bladder and sphincters (external and internal) werent destroyed in surgery. I hope this answers your question, I haven't been told I have a spinal cord injury.

I don't see how you would avoid leaking if you had Botox injections into your sphincter unless the amount can be so finely calibrated that it relaxes the sphincter rather than temporarily paralyzing it. It's not been my impression that the procedure is refined enough to dial in a predetermined amount of muscle weakening

.

This is exactly what I fear from - and exactly the reason I am so cautious about this whole procedure. My doctor said that it will be alright if my internal sphincter is working properly and therefore will be able to contol the leakage of urine even if the external sphincter is paralyzed. But he cant tell for sure from the tests I have done whether I have total (involuntary) contol of my internal sphincter or if the nerves connecting to it are also disfunctional.