Bladder spasms, incontinence...Botox?!

[KristaH]

I have had bladder spasms and incontinence since i was pregnant with my daughter back in '07. Never thought much of it while pregnant, I mean you have a babys fat head pushing on your bladder, not comfortable! After i gave birth still didn't think much of it, things get stretched out down there while in labor, incontinence is kind of expected of a woman who gave birth naturally. A year after I decided to do something about it and went to the Uro/gyn (urologist/gynecologist) and they put me on Oxybutanin. I was on it for a few months and it did nothing but dry out my hands and feet, still had a leaking problem. So switched to the lower dose of Detrol LA, same issue. So on the the higher dose of Detrol LA, same issue but worse. Ugh! Would I ever get relief? I, at this point, decided to give up on the pills and just deal with it as best as I could with incontinence pads and catheterizing when I felt I needed it, which was all the time lol. This was also about the time when MS was rearing its ugly head viciously so I was consumed by getting it under control.
Two years later MS is FINALLY calmed down enough that it isn't causing continual problems, so a good time to try the Uro/gyn again. I went in for an initial appointment where I was told to do a "voiding diary" a list of liquids taken in, how much comes out and how much is leaked out. At the follow up appointment four weeks later I got to do a fun test! First they had me void as much as I could naturally, then catheterized me to make sure I was empty. Then the test. Got hooked up to a catheter in my urethra, one in my vagina to measure the bladder floor muscle spasms (sorry to be graphic there!) and then some electrodes around my thighs and bum to measure the muscle activity. they then pumped my bladder full of saline solution to see how much it could hold and to measure the spasms and how much I leaked. All got printed out in glorious color graphs. I then got to talk to the Dr about what it all meant.
It translated to what I've known for years, I have urgency, frequency and retention. Hence the Poise I have to wear every day but for showers and the catheters i go through faster than I should. The Dr suggested trying the pills again, maybe doubling or tripling the dose. I said no, I didn't like my hands and feet cracking and bleeding years ago, pretty sure I wouldn't like it now. There is a device, an Interstem, which is a pacemaker for the bladder. I am all for it, only problem is I still need to get MRIs and that is a no. There is a MRI compatible one in the queue, but who knows when that will happen. And the final option is Botox, will paralyze the bladder muscles and keep them from spasming, shouldn't dry me out like the pills and is MRI safe! The only issue is it will increase the retention. But honestly i already cath multiple times a day, will it really be that much of a difference? Probably not.
So I had to get a chest x-ray to make sure my heart, lungs etc are healthy and also get blood work done.
The procedure is scheduled for the 19th of December. I go in on the 5th to get the game plan and all the questions I have answered by the Dr and the anesthesiologist.
I will be the first to get the Botox injections in my bladder at the clinic, and really the whole state of NM! I guess it was just recently approved by the FDA for this and no Drs are doing it yet. I will post follow ups to let others know if it works and what all is involved

[KristaH]

I had the procedure this morning. Went in at 6am, got signed in a pregnancy test done (passed with a negative lol, knew it was so no surprise) got an IV started. I love how they never listen when I tell them my veins drop and roll so don't fish for them. They fished for the vein, I nearly passed out, all good fun that early in the morning! Its good that I was laying down during this.
Its funny that when people find out I have MS they have to tell me about who they know that is just diagnosed and how they are doing, I don't mind but that's not the best time for such a conversation lol.
Any way, I get into the OR about 7:30am. All the Drs that work in the Uro/Gyn clinic were there since I am the first patient to have this procedure done.
All I remember is breathing deeply from the mask, then being talked to in recovery. I guess I was in recovery for about an hour at that point, was 9:40am. I woke up like from a nap, a little groggy but otherwise okay. Wasn't until I was on my way home in the car an hour later when the discomfort started. Wasn't bad, just a little tender.
When home I ate lunch and have been sitting on the couch in a half dose since. I had to take some ibuprofen to combat the increasing discomfort but nothing major. I haven't noticed any improvement from the spasms yet, but what I've read it takes a few days for it to really work.
A quick in-and-out procedure, we shall see if it has been worth it. I will keep you all updated

[KristaH]

It has been a week and a day since I had the procedure. The best thing I have done!! My incontinence is near zero, the feeling of HAVING to go right NOW is gone I actually have time to walk to the bathroom and undo my pants at a normal rate instead of on the way. I still have frequency but that is getting better too. The retention is worse, but I knew that was going to happen so I know to cath every time and save my self the hassle.
So was the procedure worth it? Absolutely!! I don't feel I need to dehydrate myself now to avoid leaking. I still wear a pad, but that is more for my peace of mind than necessity, I'm sure once I get past the stigma the past has given me about the trustworthiness of my bladder, I will cut back on wearing them. So if you are like I was with urgency, frequency, retention and spasms and the pills don't help you and you still need MRIs so the pacemaker is out, I suggest Botox injections! A few days of discomfort is totally worth it in my opinion!

[andersimp]

You're setting the stage Krista!

Thanks for breaking ground on this one for us Krista ... am off to NIH on Tuesday and
will inquire. Didn't like the uro/gyno I went to.
Wondering who else might prescribe? or whose hoops I have to jump through!
Caitlin

[MSSpouse]

Andersimp,
I sure hope you won't have to jump through too many hoops! Here in the midwest (Chicago to Milwaukee area), I have heard one MS doctor at an MSSA session discuss, in some detail and in generally positive terms, the outcomes for the Botox treatment. So it really sounds like docs are moving ahead with this. Also, on Chicago-based news radio, I've already heard it being advertised for general incontinence/urgency issues, not specifically MS-related ones. I imagine the combo of good outcomes and decent reimbursements for the procedure should make it pretty easy to find qualified practitioners before too long.

One funny thing: when one doctor was describing the procedure, he mentioned that the Botox is placed in four to five sites. Unfortunately, the acoustics of the room made it sound at first like he said forty-five sites! Fortunately this was quickly clarified, otherwise I don't think too many folks in that room would have been rushing to sign up.

[kko]

Have used bladder botox injections for 3 years

I am still amazed about how few people know about Botox for bladder spasms, incontinence, etc. I am not sure how long I have had MS because my course isn't typical and I had another neuro disease diagnosed 13 years ago. Unclear of start/stop/progression/ etc = whatever. I have had a neurogenic bladder for 7 years. I tried all the meds: ineffective with multiple side effects. Had the test with saline solution instilled into my bladder, except I was supposed to remain standing up (use my walker) with the pressure gages inside to measure spasms. I was unaware that the saline would be so cold. What a shock (not) that I had a massive bladder spasm with all the saline running down my legs, and wetting my socks and shoes. And the RN doing the procedure was so surprised! I pointed out that 1. She could have believed my description of my spasms and incontinence, and 2. She could have told me to remove my socks and shoes first. She didn't even have a towel to hand me. I asked if she thought I was making up my complaints. Then there was a serious push by the MD for the implanted device. (Loved the photo on the brochure, a woman sitting with a friend drinking coffee wearing white pants.) I pointed out that this device was incompatible with MRI's, and not an option for me. End of that urologist. Fast forward, I got myself to a well respected MS Center and a referral to a urologist who does Botox for bladders like ours. I already had records of all the pee diaries, bladder training, drug failures, tests, and had to show proficiency at self intermittent catherization. I have received Botox 200 units in my bladder 6 times now, about 6 months apart. My uro likes to stretch out the interval so I am back to about 30% better than when I first got Botox. The procedure is so simple. I get a urinalysis with a culture if indicated, a week before I am scheduled to be sure I don't have an infection. Then I go for my appointment, answer intake questions, vital signs, etc., and then rollate (my walker) to the procedure room. Assume "the position" on the table. Bottom, (perineum) is washed and draped. Have a little numbing gel put around my urethra, then get a foley catheter inserted into my bladder with a balloon, and my bladder is instilled with numbing solution so I won't feel the injections. I wait for a little while, usually playing w my phone. Then the uro comes in and she is so kind. She withdraws the foley catheter in inserts a cystoscope with an injection needle and proceeds to make multiple miniture injections all over the inside of my bladder. I always watch on the screen. For me, it's a little like getting my toenails cut. I have never timed the actual procedure, twenty minutes? I always like talking to her about neurogenic bladders and what is new in 'the business'. She asks how I am doing but always says that if we are chatting I must not be in pain. Then she says bye, and an MA comes in and removes the drape and helps me get down off the table. I get dressed and leave and feel like a completely normal person. The only thing I feel is comfort and NO bladder spasms. I still use a system to monitor how much I drink and what times I will plan to pee. I never want to have an overly full bladder just because the spasms are gone. I still feel when my bladder is filling and when I sit on the toilet I bend over to increase pressure in my bladder. After I think my bladder is empty, I use my hands to push down on the top of my bladder to further empty it. I am on the thin side, and 6 pack abs have eluded me for several years. I am not trying to push through taut abdominal muscles. I still avoid most bladder irritants. No more than 6 oz of real coffee a day I drink over 2 liters of water/day, always stopping before bedtime. The Botox has been a life changing experience. I would do it even if it hurt. I will ask the neurologist the next time if my experience is typical in terms of not having any pain. I still wear a 'peace of mind' mini panty liner, but I don't know why.

[ActiveMSers]

KKO, thanks for the great and detailed post. Krista as been championing Botox, too. Sounds great and many of us could benefit from the procedure....