15 replies to this topic

[nitrosport_5]

I have read that this procedure has recently been approved by the FDA. from what i have read, this procedure looks promising but i had a few questions about it, and would like to know of anyone else here has had this done. as it stands right now, i would love to be able to get off of my oxybutinnin for the reason that the drymouth is horrible and im tired of having to deal with it for the last 7 years.

So my questions are

What are your experiences with this? (if you have had this done, i know there has to be someone out there)
I have the feeling to know when i have to "go", will that be lost after botox?
will this take place of the oxybutinin i am currently on?
Are there any side effects?


thanks for any info you can provide. My mom is really eager to have this done for me but i would really like to know if it will even benefit me, or get some more peoples opinions before i go through with it.

[ThomasR]

My experience with botox is very positive. I used to take Oxybutinin, but there were too many side effects (I became extremely tired and consequently was sleeping most of the day). Then I switched to emselex which was better. I quit taking any medication when I started to receive my botox injections.

Usually I need them every 6 months or so. One time, the effect started wearing off after 4 months and I took emselex in addition which worked for me.

I, too, feel when I have to pee. At least when I drink in normal amounts. The feeling was the same with botox except for the first week after the injection when I have to go to the toilet all the time. I am not sure if it is normal that you still feel your bladder. It seemed unusual to me and I asked my doctor. He, too, said it was rather unusual, but maybe the nerves are more sensitive when they grow back. I don't know of any side effects. But during the first week my bladder usually goes crazy.

I hope this helps you. And sorry for my bad English. Hope you understand what I am trying to say.

[ebeth]

I've been getting botox for my bladder every six months since 2007 and it's made a huge difference. I still take oxybutinin, but I don't have any side effects from it so I take it as an extra precaution.

Usually it takes a week for the botox to start working and seems to last about 5 months.

Most of the time I still can tell when I need to go - that hasn't changed since I started getting botox. In fact, now when I feel like I need to go, I have more time to get to the bathroom before I'm incontinent.

I haven't had any side effects from the botox. When I get the botox done, the doctor gives me a prescription for an antibiotic to prevent getting a uti from the procedure. Also, during the procedure, I get a mild case of autonomic disreflectia which goes away immediately after the procedure. Once I had some blood in my urine after the procedure, which can be expected.

The worst part about the whole thing is the often repeated joke about 'I wish I could use some of the botox for my face' that I get from nurses, pharmacist, etc.

If you have any more questions, feel free to ask.

[hoody]

Had my botox topped up on monday.

I have very positive experiences with this going from complete incontinence to having a better handle on my bladder. I am now on a six month cycle of treatment as this is how long the botox lasts for me.

Unfortunately I haven't much sensation to tell me when to go usually when I feel the need I have a short time to get to the bathroom. Stays the same before and after botox.

I still take oxybutinin though I take it as lyrinel slow release tabs. Will try changing meds in a few weeks once my bladder has calmed down.

I have zero side effects from getting it done. Bit of blood after the procedure but that's a given due to it being an invasive op.

[TJT]

I an considering Botox. I feel ~350ml and if I don't get cathed I am incontinent. That interfers a lot for getting out socially. What would be the difference with the Botox?

[ebeth]

TJT, on 22 December 2011 - 03:52 PM, said:

I an considering Botox. I feel ~350ml and if I don't get cathed I am incontinent. That interfers a lot for getting out socially. What would be the difference with the Botox?

Botox basically reduces/prevents incontinence by reducing bladder spasms. That means your bladder will hold more and you don't have to cath as often. Therefor, your social life isn't as restricted because you're not constantly heading for the bathroom and you don't have to worry as much about being incontenent in public.

[Elina_HSS]

Hello everyone!

Thanks for all the help. I too, have some questions.
The main reason I want to have the botox injections is that I want to get rid of incotinence pads and the fear of losing urine while not at home or at night. I am a c7/t1 and you people know how hard things are, especially when in a relationship.
So..the main question is.. Will I feel safe to go out and have fun without worrying about it? Will I be able to stop wearing the horrible inc.pads?
Does it have any other side effects regarding sexual life or future pregnancy etc.?
I know the questions might sound a bit stupid but im really-really tired of not being able to have a normal social life.

Elina

[Scorpio81]

Elina, botox paralyses the overactive detrusor muscle, which is the muscle responsible for spasms and sudden inopportune incontinence, so that you actually go into retention, and can then empty your bladder with a catheter when *you* choose to, rather than the the other way around! I am in the same boat - want to get rid of the pads and be socially continent again (I used to be, when the meds worked but they just don't any more ) So I think the answer is yes, if it's successful (I was told the success rate is about 70-80%) you can ditch the pads. I can't wait to get botox done, but i've got to wait until after my upcoming spinal surgery. Hope it works for you!

[Elina_HSS]

Scorpio81, on 28 December 2011 - 04:01 PM, said:

Elina, botox paralyses the overactive detrusor muscle, which is the muscle responsible for spasms and sudden inopportune incontinence, so that you actually go into retention, and can then empty your bladder with a catheter when *you* choose to, rather than the the other way around! I am in the same boat - want to get rid of the pads and be socially continent again (I used to be, when the meds worked but they just don't any more ) So I think the answer is yes, if it's successful (I was told the success rate is about 70-80%) you can ditch the pads. I can't wait to get botox done, but i've got to wait until after my upcoming spinal surgery. Hope it works for you!

Thank you sooo much for the reply!

Just like you..I was ok when the meds work but now... Im a very active person and I hate my life right now. Im always afraid of "accidents".
Surgery? Good luck with everything!

[TJT]

Great info. I will be pursuing the botox asap. I take it they inject it through the bladder? or how?

[Cathelena]

I had botox for the first time a few weeks ago and its all positive. Has helped but am having a top up in few weeks as has not entirely solved the problem, but is alot better

[ianz]

Hello, I have had the botox jabs every 6months for about two years. It worked great as long as I didn't have a uti. I still knew when my bladder was full and I had plenty of time to cath. It seems to have stopped working for me now. Nothing, zip. I don't use oxy b or any other tablets. Too many sideaffects. Plus it interfered with my drinking!
As a man the procedure is fine. They go through the urethra (penis in a man) No blood, no hassle, in and out in half an hour. It usually took about 3 days to work for me.
They use a camera attached to the needle so they can also check out the condition of the bladder. Very useful.

I don't want (or personally need) any medication or regular procedures. I'm sick of all of it now. I don't want to put off the inevitable any longer and have deceided to have the op. I'm 49 now and think that it is better to do it now than later. Drugs etc were just a short term fix for me and in some ways my bladder spasms seem worse now (just me). That is no longer acceptable. If I cut the bladder in half it cannot spasm QED. Cystoplasty is the long term fix with no drugs. I must admit that the very idea of surgery scares the crap out of me but not as much as a lifetime of drugs and procedures.
Botox probably won't do any harm so give it a go at least for the video checkup but don't think it is going to solve all your problems. It's a long road to peace of mind. Do your research and trust your decisions. There is a lot of information on the web outside this forum and not forgeting your doctor. Use it. Good luck.

[megatrig]

Scorpio81, on 28 December 2011 - 04:01 PM, said:

Elina, botox paralyses the overactive detrusor muscle, which is the muscle responsible for spasms and sudden inopportune incontinence, so that you actually go into retention, and can then empty your bladder with a catheter when *you* choose to, rather than the the other way around! I am in the same boat - want to get rid of the pads and be socially continent again (I used to be, when the meds worked but they just don't any more ) So I think the answer is yes, if it's successful (I was told the success rate is about 70-80%) you can ditch the pads. I can't wait to get botox done, but i've got to wait until after my upcoming spinal surgery. Hope it works for you!

Really!??

Didn't know that.

I had botox to relax bladder neck and spihcter to allow my bladder to empty properly.

At first successful but now not so. It works for 3, 6, 9 months. Different for everyone!

Is useful as it isn't to invasive.

Hopefully your urologist can answer any specific questions you have?

Good luck

[Cathelena]

Myexperience with botox has been good.

The first time i had the procedure i noticed a little difference but not enouh, so my urologist repeated the procedure about six weeks later and after this I found a lot of difference, Before the botox I was leaking constantly througout the day and night and having to cath about every 2 hours.

Now the only leaks have are the occasional ones at night and can go upto 4 and a half hours between cath.

However, i do still take regurin twice daily,

Cathelena

TJT, on 02 January 2012 - 03:22 AM, said:

Great info. I will be pursuing the botox asap. I take it they inject it through the bladder? or how?

They do spasmodic injectons through the bladder, but as it is "touch and go" as to where the injectons go, this i why a first procedure doesnt always work and a second is needed,

Cathelena

[curbyi]

I have been using Botox injections for several years now although I think I differ from you guys in as much as I use a suprapubic catheter rather than intermittent catheterisation.
I suffer from a fair amount of catheter blocking which if the blockage is not cleared leads to bypass.
I have found that when I feel the symptoms of dysreflexia as a result of debris blocking the tube coming on, if I doubled the leg bag tube into a loop and then rotates three twists into it and hold for 30 seconds this creates enough back pressure to clear the debris blocking the tube probably at the tip of the Catheter in the bladder.
Without Botox when I block I will bypass fairly quickly within 5 min the Botox injections affords me nearly 20 min before I have wet trousers, this time allows for me to get assistance.
On the NHS receiving the treatment so my Botox injections are scheduled at six-month intervals however this can overrun.
I think a critical thing to remember though is that my surgeon clears out all the debris in the bladder when he carried out injections which I believe greatly helps reduce amount of blockages I receive.
I'll would definitely recommend it.

[Dovely]

I can totally reccomend Botox,

it has made such a difference. I still take Oxy once a day but I have only had one accident since I've been getting BTX injections every 5 months. The effects set in after about 4 to 6 days after the injections and last for about 4.5 months. In my clinic they do a lavage with cotrim ( an antibiotic most commonly used for UTI's) and I take it for another 3 days. havn't had a problem with UTI's following the procedure yet. I've also had injections in an area of my skin around the level of my "injury" where I had problems with excessive sweating. Those effects last for up to 2 years.
I am quite greatful cause it's certainly made life a lot easier.