Neurostimulator Experience

[cuttersmom]

Lulu asked me to post regarding the neurostimulator that I have recently had implanted to help with urinary issues.

Quick background - Was dealing with urinary frequency issues for the last 3-4 years.  Was too busy to see a Dr. until last Sept. 08.  After BVR's, uro found that I was retaining around 200cc after each void (I never did feel empty).  We danced around blockages and such and tried Vesicare and Flomax, with no relief.  After 2 UDS's, uro found Detrusor Sphincter Dyssenergia, typical in spinal cord injuries (and MS, but that wasn't mentioned yet).  Uro sent me for T & L spine MRI's, which showed lesions on the T-spine. Now he mentioned MS and referred me to a Neuro, who confirmed (Jan. 09) the dx with additional tests (lesions on brain & c-spine as well).  The neuro referred me to a pain specialist for a consult on implanting the neurostimulator to help with the urination. She has 5-6 other MS pts. that have had the implant done with great success.  In the meantime, went to Mayo AZ for second opinions from Neuro and Uro. Both of those Dr.'s recommended against the implant and felt that I was too early in the disease process (est. at 3-4 yrs.) to consider it, and should just self-cath.  That was not an option for me, so I went back to my Uro to discuss putting the implant in and he agreed (I thought the pain specialist was a quack!).

I had Phase 1 done on March 18. The surgeon puts the leads into the sacral spine area, and tunnels the wires to where the battery implant will go in Phase 2. There is also a lead the comes out of the back to connect to the trial external battery pack, worn like a pager on your hip. I was awake before I even came out of the OR, drinking my coffee in recovery,and went home an hour later.  All dignity is lost during the surgery as you are positioned face down, with your butt in the air.  Your butt cheeks are taped apart so that the surgeon and Medtronics rep are able to watch your anal sphincter for stimulation (glad I was asleep for that!).  The pain was not too bad after, although I couldn't sit for very long, and had to be careful when positioning on sides and front (no back sleeping). I could only do frontal showers, but at least I could do a shower!  

Phase 2 was done on March 25.  During the week prior, the Medtronics rep and I had done some adjusting of the settings of the stimulator.  The impulses should be felt in the perineum, pelvic floor and anus area, and we played around with different settings to see what worked better.  The second surgery entails making a pocket for the battery pack in your butt/hip area and implanting that.  I was under much deeper anesthesia this time and had a really hard time coming out of it. I was in recovery for about 3 hours and probably should have stayed longer, but I just wanted to go home!  That afternoon I had a lot of nausea, vomiting, and could not pee.  Ended up going to the ER that night to get cathed and had 1200cc of urine in my bladder!! Kept the foley in overnight and took it out the next day, with no residual problems.  Pain was much worse after this one because of the surgeon having to make the pocket, but manageable with pain meds.

I was back to work the next week, avoiding lifting and standing too much, as the leads can migrate until the scar tissue forms around them. I have a remote control that I use to adjust the amount of stimulation. Right now, I am at a pretty low setting, and over time that may increase.  The battery will last anywhere from 3-7 years, depending upon the intensity of the stimulation that is used.  Oh, and I am now an official cardholder of the implant society and must be hand screened at the airport!

I am so pleased with the results of the Interstim. I am able to sleep through the night now, rather than getting up 5-6 times a night.  I still pee a lot when I drink coffee or alcohol, but if I don't drink that, I can go quite a few hours without peeing, the force is much better, and I almost feel empty.

The main drawback to the neurostimulator is that MRI's cannot be done.  My neuro felt that she had her diagnosis of MS, and was more concerned with my comfort than follow-up MRI's.  We (Neuro, Uro & I) agreed that if I began to have flares (which I've never had), or symptoms started to progress to a point where she felt MRI's were needed, I would have the stimulator removed.

So that's my story. I know the stimulator does not work for everyone, and some patients have had it removed because they were unhappy with it.  Personally, I think it's a dream come true! Urination (and even BM's) are so much better now!

I'm happy to answer any questions that anyone might have..good, bad or indifferent!

Kristen

[cuttersmom]

I never got UTI's, but did have a bladder infection once about 3 years ago, which is very surprising with all that residual!

My reason was purely comfort.  I would, literally, go to the bathroom upstairs and walk down the stairs and have to pee again.  It was ridiculous.  I'm a nurse and can't leave my patient every time I have to go to the bathroom, so it was interferring with work as well.  I wouldn't go into small stores because they didn't have bathrooms, and the first thing I would find in the grocery store or Target was the bathroom.  I was also at the point of driving my husband crazy because I would have to pee whenever we got in the car to go somewhere.



I work in the Recovery Room and had quite a few female pts. that had the implant and loved it! This was prior to my dx, so I don't know if their issues were MS related, but as soon as we got to the point of talking about it with dr's, I jumped at the chance and am glad that I did!

Good luck whichever way you decide to go!

[rendean]

Thanks for sharing all of these details. At my urodyanamics eval I was asked if I was interested in an InterStim due ot post void residual. I declined as I hadn't even gotten my MS dx yet.

My internal med doc is also a nephrologist and he suggested it yesterday, also. I have frequency but take a diurectic and occassionally have urgency but that's because the diuretic has overloaded my bladder.

Knock on wood, I haven't had a UTI in 3 o4 years. So, at this point I'm not interested.

Question: Did you have it done for comfort reasons or were you getting UTIs or having other complications?

Thanks for sharing,
Ren

[Lulu54]

For all you frequent bladder folks - you may want to review this information about the neuro-stim.

[Lulu54]

Ahh, the drream of everyone here.  Being able to sleep through the night without the potty breaks.  Thanks Kristen for sharing all of the details with us here.  I hope it is useful to someone else other than me.

I wrote in my journal a while back about this option, and that my neuro did not want me to do it, or at least not yet because of the MRI problem.

My urogyno did tell me that one of her interstim patients forgot this warning and did have an MRI done.  He had to have his unit reset, but according to her that was the only problem.

thanks again,
Lulu