[AHolland]

For a long time I used a small dosage of Ditropan to maintain a leak free bladder. This worked well until I had a lot of UTI's (Urinaryu Tract Infection). Whenever I had a UTI my bladder would spasm and leak. One time when I was having my bladder checked out by a Urologist he asked me if I would be part of a study on the benefits of Botox injections on the bladder of SCI patients.

For the past 2 years I have been in the study. During the study the patient was given either an injection of Botox, or an injection of saline solution. The patient did not know which one they got. Late in the study the patient was asked if they wanted a Botox injection. This time it was the real thing.

As many of you might know, Botox is a chemical that relax's the muscles. The Botox injection is inserted into the spincter muscles of the bladder. Normally you would think this would cause more leakage. In reality it causes the reverse. One reason for this is that many SCI patients experience different degrees of spasticty. This is the little, or big, spasms that can cause the bladder to open up for short or longer periods of time. By relaxing the spincter muscles, the bladder does not open during the spasm.

After 2 years, I may not have the "official" right to say it works, but it works. It has been nice to not have to wear a leg bag for everything I do. For myself, it works 100% up to a bladder level of about 900 cc's. Normally you should empty the bladder around 400 cc's. For summer I can now wear shorts instead of long pants to cover up my leg bag (I hate people seeing my leg bag, but that's just one of my personal issues, certainly not everyone).

Botox injections can supposidly work for people other than SCI's. Where it works 100% for me, I still use a leg bag when going to important functions, just in case I run over the litre level. A bladder can only hold so much.

Another important point to bring out is the longevity of the injections. The first injection works for 6-9 months. For me it was closer to 5 months. The good news is that for the second and subsequent injections the effects last longer on the order of 9-12 months.

Lucky for me this kind of medical procedure is covered by the government. It is not covered in all areas. If you are interested, I would check on what is covered in your area and whether it is available for you yet. Keep in mind that although the beneficial effects of Botox are known, there is little research to back it up. That is one of the reasons for the research that I am going through. Let me know if you have any additional questions and I will answer them to the best ability I can.

[Ches]

I've heard of this before.. The benefits are obvious, but what happens if you regain function of the bladder?

[glamisgirl]

Thanks for the info. About a month and a half ago I started using a leg bag full time, I am waiting for my botox study to start. I had the exact same problem you had, the ditrpan was working then the uti's took over and the leaking started. My urologist said the botox would last around a year, I figured that was too good to be true. 4 to 5 months is better than nothing. Living in So. Cal. the need for pants is rare, want to be back in shorts by summer.

[sfultong]

Yeah, my urologist was telling me about this treatment... she seemed quite enthusiastic about it. I forget why she didn't want to start me on it right away. Maybe because I seemed pretty hesitant about. I do wonder about the long-term effects of the procedure.

[Bieke]

Hi,

I just joined this forum.
Wanted to let you know that I already had the treatment 3 times.
First time was december 2003. The botox did it's job for about 6-7 months and then gradually the 'urge' came back. Second time was in december 2004. That time it lasted for.... 2,5 years! Medically not possible but it happened. Third time, was last week. Exactly 1 week ago but my volume already went up from 200cc to 500cc. Since the effect of botox only lasts for a couple of months, there's no damage if you regain function. Function return can happen just as easy. My doctors didn't really say anything about long-term effects. They were 'sure' it was safe (like botox in the forehead I assume?). Anyway, I think the change in quality of life is so huge that it is worth 'the risk' (if there is one).
If you have any more questions about it, I'm happy to answer them!

[crazy8]

I too had botox injections, originally in my upper leg due to leg spasms. The leg spasms would then trigger bladder spasms that caused a great deal of leakage. By treating the leg spasms with the botox injections, every 3 months for the first year, eventually the spasms have stopped completely, and I no longer need the injections. The botox injections worked great for me.

[Incompletequadlady]

glamisgirl, on Nov 21 2007, 09:13 AM, said:

Thanks for the info. About a month and a half ago I started using a leg bag full time, I am waiting for my botox study to start. I had the exact same problem you had, the ditrpan was working then the uti's took over and the leaking started. My urologist said the botox would last around a year, I figured that was too good to be true. 4 to 5 months is better than nothing. Living in So. Cal. the need for pants is rare, want to be back in shorts by summer.

____________________________________________________________________________
Good Day Gang After 5 month of beint totally cathethed About 1 month ago My Dr took my catheter out and then I was on some anti bladder spasm pills ditrpan I think but honestly my body never stops leaking and it is un bearable
I want to check into these injections more sounds good and I will ask my drs about these ...
Cordially
Judy

[kewlcatkez]

Incompletequadlady, on Dec 23 2007, 01:53 AM, said:

glamisgirl, on Nov 21 2007, 09:13 AM, said:

Thanks for the info. About a month and a half ago I started using a leg bag full time, I am waiting for my botox study to start. I had the exact same problem you had, the ditrpan was working then the uti's took over and the leaking started. My urologist said the botox would last around a year, I figured that was too good to be true. 4 to 5 months is better than nothing. Living in So. Cal. the need for pants is rare, want to be back in shorts by summer.

____________________________________________________________________________
Good Day Gang After 5 month of beint totally cathethed About 1 month ago My Dr took my catheter out and then I was on some anti bladder spasm pills ditrpan I think but honestly my body never stops leaking and it is un bearable
I want to check into these injections more sounds good and I will ask my drs about these ...
Cordially
Judy

Hi Judy,

It may be possible that the leaking is due to being catheterized with an indwelling for so long. Research shows that bladder capacity shrinks in a lot less than 5 months unless you were using a catheter valve ( or similar) to hold urine in the bladder ( as opposed to free drainage) regularly.

Bladder training ( often involves catheter insertion and then tapping it off with a valve or similar for increasing periods of time) often helps to regain some bladder capacity. Some people do not revert back to the capacity they had before shrinkage, and some do opt for Augmentation surgery ( whereby bladder is reshaped to be made bigger) and surgeries whereby the appendix or other such 'vessel' is used to make a bigger bladder area.

Obviously, the conservative route would probably be considered first.

Botox isn't suitable for all, so drs generally do 'tester' shots of it before using it properly,

I hope that you find a solution,

Take care,

K