Has anyone here had BOTOX injections in the bladder ?

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lyndacarol
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Re: Has anyone here had BOTOX injections in the bladder ?

Post by lyndacarol »

Welcome to ThisIsMS, JanetF.

This was posted some time ago in this thread:

Botox for overactive bladder (urge incontinence) (Dr. Elizabeth Mueller, Chicago's Loyola University)

http://www.doctoroz.com/episode/dr-ozs- ... 4141122001 mention "for MS"@1:20
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trrish
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Re: Has anyone here had BOTOX injections in the bladder ?

Post by trrish »

Janet, I am not self-cathing. I thought that's what was next, but instead signed up for this study and increased my usage of D-Mannose. I used to take D-Mannose powder in water when I thought I was getting a UTI but now use it proactively. The urologist I saw for the Botox specializes in MS patients. He really encouraged me with the D-Mannose. Every other doctor I've had gives me a blank stare when I mention it. I haven't had an infection or any accidents since the Botox. I don't know if the Botox would change the amount of times one has to cath, but I would think that could be the case for some.
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Quest56
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Re: Has anyone here had BOTOX injections in the bladder ?

Post by Quest56 »

trrish wrote:I used to take D-Mannose powder in water when I thought I was getting a UTI but now use it proactively. The urologist I saw for the Botox specializes in MS patients. He really encouraged me with the D-Mannose.
I also take D-Mannose to help promote bladder health, about 1-tsp in water morning and evening. I learned the hard way not to overuse it. See the side-effects listed on the WebMD page:

http://www.webmd.com/vitamins-supplemen ... =D-MANNOSE
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Quest56
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Re: Has anyone here had BOTOX injections in the bladder ?

Post by Quest56 »

lyndacarol wrote:Welcome to ThisIsMS, JanetF.

This was posted some time ago in this thread:

Botox for overactive bladder (urge incontinence) (Dr. Elizabeth Mueller, Chicago's Loyola University)

http://www.doctoroz.com/episode/dr-ozs- ... 4141122001 mention "for MS"@1:20
This interview makes the procedure sound like it is for women only, which it is not. The FDA approval is for neurogenic bladder, which affects both men and women.

And, about the anesthesia question, for men the procedure is a little more difficult because the scope and instruments have to bypass the prostate. Because of this, each time I have had this procedure (four times now) it was in an outpatient hospital setting, and I was fully anesthetized.
Last edited by Quest56 on Sun Mar 29, 2015 8:44 am, edited 2 times in total.
Tash1217
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Re: Has anyone here had BOTOX injections in the bladder ?

Post by Tash1217 »

I've had MS for almost 20 years. I'm 40 now. Much get the bladder Botox and first hand know how it can change your life. It was the SMARTEST CHOICE IVE EVER MADE! It is amazing and helped me enjoy life again because I wasn't afraid that I'd have to pee all the time. Plus I could wear clothes that I want not the clothes that hide my pad!
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Re: Has anyone here had BOTOX injections in the bladder ?

Post by JanetF »

I am having the procedure next week. The test they did on my bladder to see if I am a candidate for it was humiliating and unpleasant. For the procedure they're giving me an Ativan and a Norco.

My doctor said I'll have to cath every four hours. This is making me have third thoughts about it.

Since I started cathing only when I get up in the morning and before I go to bed, I have a few less accidents and have started wearing pants and leggings again, as they're not really convenient for cathing.
I was looking forward to having NO accidents. Not having to carry a supply of pads, using up a bunch of suitcase space on diapers. Not having to wear diapers!
The reason I wanted the botox is so I can do things like go worry-free to museums, concerts, barbecues, parties, ball games, road trips, camping, hiking, gardening, just walking to the damn store, you know, having a life. If I have to take off everything below the waist and find a relatively clean and private place to do the cath thing every four hours, that sort of makes me wonder if it's worth it.

Thoughts?
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Re: Has anyone here had BOTOX injections in the bladder ?

Post by TeresaL »

I have never had Botox injections in the bladder but yrs ago had Botox injections in my face. Botox made my legs much weaker for about 3 days. So I won't touch the stuff. Wondering if the ones who had the Botox injections in their bladder noticed more muscle weakness in other parts of their body?
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momnmore
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Re: Has anyone here had BOTOX injections in the bladder ?

Post by momnmore »

is catheterization automatically needed while on Botox?
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arielmt
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Re: Has anyone here had BOTOX injections in the bladder ?

Post by arielmt »

momnmore wrote:is catheterization automatically needed while on Botox?
Wow, this is a super old thread but since there's a recent question, I'll answer.

I've had the Botox procedure twice. It lasts 7 - 9 months, and in my case the first one lasted nearly 10 months. The literature on the procedure states that about a third of the treatment recipients end up needing to self-catheterize. I found that to be the case for me, the Botox relaxed the bladder muscles to the point where starting a urine stream was extremely difficult. However, having been through all of the anti-cholinergenic drugs (Detrol, Ditropan, Sanctura, Tamsulosin, etc.) at that point I was close to needing to catheterize anyway.

While I wasn't happy about it, I will say that there are some definite quality of life benefits. Basically, you decide when you're going to empty your bladder. This means you're not afraid to leave the house because of constantly searching for a restroom. It also means you can have much longer periods of uninterrupted sleep which is huge compared with having to get up between 3 and 10 times a night. It also cuts down on UTIs which are caused by retention. As long are you are emptying regularly and completely, you shouldn't get a UTI even with catheter use. I'm able to catheterize while sitting on the toilet and follow a pretty sterile procedure. It's not hard to do and you get used to doing it quickly.

So yeah, I'm not happy about having to catheterize but it's way better than the horrible spasticity and incontinence issues I used to have.
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Quest56
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Re: Has anyone here had BOTOX injections in the bladder ?

Post by Quest56 »

arielmt wrote: As long are you are emptying regularly and completely, you shouldn't get a UTI even with catheter use. I'm able to catheterize while sitting on the toilet and follow a pretty sterile procedure. It's not hard to do and you get used to doing it quickly.
So yeah, I'm not happy about having to catheterize but it's way better than the horrible spasticity and incontinence issues I used to have.
I agree with this, especially as regards benefits, but the UTI issue can be a problem for me. It is always a struggle to maintain a high level of cleanliness, and this is especially difficult when using public restrooms. I temporarily loose a lot of function when I have a fever, so I always want to avoid a UTI. My last UTI was a few years ago, so I am getting pretty good at keeping them at bay, but it is sometimes a struggle.

I shudder when I remember self-cathing at the LA airport in a public restroom down by baggage claim a few years go, it was remarkable I didn't pick-up a UTI at that time. As my Urologist has said, it is impossible to self-cath without introducing foreign bacteria into the bladder. The hope is to establish a kind of balance with this bacteria that doesn't result in a UTI, and to avoid specific types of bacteria, such as E Coli. To this end, regularly emptying the bladder, and use of D-Mannose, is important. It is best to avoid overusing antibiotics to clear the foreign bacteria out, else you increase the risk of developing a drug-resistant infection.
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TeresaL
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Re: Has anyone here had BOTOX injections in the bladder ?

Post by TeresaL »

I haven't tried Botox for the bladder but tried Botox for the face about 5 yrs ago. The buried made my legs weaker for about 3 days then went back to normal( my normal). Do other MSers experience the leg weakness after bladder bkrox shots?
I have been wearing pads for yrs w detrol. Tried detrol recently, but caused leg weakness also
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Re: Has anyone here had BOTOX injections in the bladder ?

Post by JanetF »

It's been a while, don't know if anyone will see this. I've had 5 injections now, and the last one didn't seem to take.

At first my doctor said oh no problem I'll book you for a surgery and give you more this time and I'm having it this week with GA for the first time. She called the other day and it was a really weird conversation. She asked if I was sure it hadn't worked, then said she wasn't sure this was the treatment for me and it might not work anymore.
I had asked her when we first started if I could keep getting the treatment as I'd heard facial injections stop working after a while, and she'd said I could get it "indefinitely".

Has anyone else been told this?

thanks
Janet
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Quest56
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Re: Has anyone here had BOTOX injections in the bladder ?

Post by Quest56 »

With time, I seem to be getting less of a benefit with botox injections for neurogenic bladder. When I first started 5 years ago, the benefit I experienced would last about 7 months before I needed another injection. Now, 5 years later, the benefit seems to last about 4-5 months, and I'm no longer able to sleep through the night soon after an injection. I'm up at least once a night to self-cath.
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone
Former Ampyra User
Regular Botox Bladder Injections
300mg d-Biotin / day
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