MS & Botox
On the recommendation of my neurologist, I had Botox treatment last week and may now have a very young looking bladder after receiving 200 units through injections. This is a relatively new procedure approved for MS and neurogenic bladder problems and I know there has to be at least one more person reading this who has had this done or at least suggested by their doctor. This procedure is used for people with spinal cord injuries and is also done on men, so this story is for everyone.
This blog may be TMI – Too Much Information – for some of you, so feel free to stop reading now, but I promise I am not getting into graphic details. I’m sharing this with those of you who make up the few thousand close friends here on MultipleSclerosis.net pages, because someone needs to be talking about the help available for this very common MS problem. It is estimated 80% or more of us have some type of bladder problem associated with the MS, but you will find very few first-person accounts of the problem.
The back history for me is my sudden urges, the leaking and the Niagara Falls type of waterfalls, created a mixed bladder habits picture for my Urogynecologist. Yes, that is a real medical specialty name and not made up; she is a combination Urologist and Gynecologist and has been my doctor for almost twenty years, well before I was diagnosed with MS and needed a Urologist. I had serious urinary retention but also had urgency and frequency. The signals between my bladder and my brain couldn’t decide what needed to be done and consequently I spent lots of time either in the restroom or making sure I knew where the nearest one was located. I was spending lots of time trying to decide if I was coming or going. It was pretty much normal for me to be in the loo at least once every waking hour.
I’ve tried a variety of different drugs for the bladder – you know the ones that are advertised during the evening news that always end with pictures of smiling, active men and women. Those drugs helped in small ways, but the overall problem still existed. I tried bladder training, but that did little good because my problem is not a weak pelvic floor. Then I developed a string of UTI’s because of retention, developed sepsis, and began doing intermittent self-catherization to be able to void completely and hopefully reduce the chance of further infections – I like my kidneys being healthy and I want to keep them that way.
Even with all of these tools, I was still a slave to the restroom; being in there a dozen or more times a day was tedious at best and a damn nuisance most of the time. It’s hard to focus on a show or work or taking a walk when your bladder and brain are having their nonstop discussion and won’t keep it to a whisper.
I won’t get into the tedious details of the procedure but let me say it really wasn’t difficult - besides I was totally knocked out and I wouldn’t have known differently. If you want more details you can always Google the topic and there is plenty to explain the technical side, including YouTube videos of the procedure. This took place in an outpatient surgery center, I was given a general anesthesia, and the Urologist then injected my bladder with 200 units of Botox about 30 times. I was in recovery for about an hour and then I was sent home with a small prescription for Vicoden if I needed something for pain. I took one the first day and didn’t need any after then. After about 24 hours, I had no symptoms that any trauma had taken place.
The Urologist who did my Botox procedure is at Ohio State University, and specializes in male urology problems, but on that day he had several of us women to treat. There are still not many doctors doing Botox for the bladder and this doctor says he is surprised by that because it is a relatively simple procedure. He says the Botox can take up to two weeks to make a difference and will last on average about six months. Case histories show it being effective for as little as four months and as much as nine months.
For me, the difference was almost immediate. I woke the next day with little discomfort. Best of all, my bladder was quiet – it had stopped its non-stop chatter with my brain. I now can go several hours and realize that I haven’t even felt the urge to go. What a major difference. Three days after my Botox, we went to an outdoor concert with friends - it was a great evening and I even drank a 20 ounce beer. The music was wonderful, the weather was perfect, but even better was I lasted from my home, door-to-door, almost 5 hours without needing the restroom. That might not be a Guinness Book of Records entry, but it is certainly an award winning length of time in my book.
If you are like I was and allowing the location of the nearest restroom to rule your routine, you might consider talking to your doctor about Botox. The age lines in my face could have used a bit of this wonder drug, but my bladder was definitely the best choice for improving my quality of life. I’m glad I had this done and won’t hesitate to do it again and again, as needed.
Wishing you well,
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