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Interstim vs. Botox (or other effective steps to solve severe incontinence)

BD
Posts: 14
Joined: Dec 2010

After robotic radical prostatectomy in Jan. '09, I have had severe incontinence (5-6 Depends a day) ever since. Anticholinergic drugs have been of no help. Now being told that only remaining steps are 1) Implantation of InterStim neurostimulation device; 2) Botox injections; 3) Adult male sling; 4) Augmentation cystoplasty; and 5) Artificial sphincter.
Have been told that, upon cystoscopy, my sphincter is "pristine," and presumably this rules out #5. Have been told mine is principally stress incontinence and overactive bladder. Have received different opinions and recommendations from four different specialists. Which a) have best outcomes? b) Fewest side effects (have been told #2 carries with it risk of self-catheterization requirement)? c) Least discomfort, pain, and trauma?

Thanks for any insights, recommendations, or experience from any of you, on any of the above five or any other.

BD

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

Hi BD,
Sorry to hear about your incontinence problem. You surely need solid information to make a decision on treatment and I hope some guys here come forward to help you with their experiences.
I wonder if you have tried “pelvic muscle rehabilitation”. This technique involves the exercise of the pelvic muscle (commonly known as "Kegels"), which can be accompanied with external electrical stimulation in the abdomen. I read that it has helped patients with nasty incontinence problems. Surely this technique may work well theoretically in guys with pristine sphincter (your cystoscopy results) that needs a “wake-up”.
Many have reported being happy with artificial sphincter surgery, but there are no assurances that it will work for long periods of time, requiring the need of “repairs/revisions”.
You could also try the incontinence clamp. It is not a natural way but it seems not to be as nuisance as the absorbent pads.

I wish you the best and hope you find a practical solution.
Welcome to the board and Have a good New Year.
VGama

BD
Posts: 14
Joined: Dec 2010

Appreciate very much your suggestions. Have heard only tangentially about the external pelvic muscle rehabilitation (electronic electrical stimulation in the abdomen). Will now add that to the list (see a further specialist on January 14 -- hope he may recommend that, for its total absence of invasiveness certainly makes it the most attractive!).

One of the specialists before tried the Cunningham clamp, but only for diagnostic purposes (tried it for two six day periods). He said if it did not leak with it, it was probably an inadequate sphincter. If it did still leak, it was probably an overactive bladder. It still leaked.

BD

lion1
Posts: 241
Joined: May 2007

Let me tell you firsthand---you are the first on this website to identify and ask someone who heard you--(ME)----ABOUT BOTOX AND OTHER PROCEDURES. YOUR DIAGNOSIS IS THE SAME AS MINE.

First, let me tell you-going on 5 years incontinent.
Problem overactive bladder-----sphincter fine.
Medications did not help.

Collagen Injection 2 yrs ago----did not work
1st botox injection--100 units--Jan 2010--didn't work
2nd botox injection-200 units --Oct 2010-didn't work

3rd Botox injection scheduled for 24 Jan---300 units---last shot at this. If it doesn't work---the Doctor wants to do the electrical implant.

No Pain with Botox injections--just sore penis tip for two days following procedure.

Used Cunningham clamp once in a while ,but I just don't like it--not real effecctive for long-term use.

Artificial Sphincter does not seem to be an option when your 50 yrs young as I am, I think the pain and risk on defeciencies would be a major gamble.

The sling gives me mixed signals, I know a few people on this sight said it helped, but just as many have had horrifying results.

I am hoping this next Botox Injection works.

Please respond with any other concerns you have.

Lion1.

BD
Posts: 14
Joined: Dec 2010

I appreciated very much your specific reply to my enquiry re the possible treatment options for the severe incontinence, Lion1 . . . in fact, I have read a number of your postings before I entered mine.

Sorry to learn about your five years with it, however . . . what a bummer. Seems like sort of a maze, doesn't it? I really appreciated your mentioning how the Botox injections are administered anatomically . . . I didn't even know that.

But I wanted to share with you some observations and maybe some concerns that I've picked up re Botox -- they may be valid, they may not.

First, I would direct your attention to the December, 2010, issue of "The Journal of Urology" -- it has two articles, one an editorial (pp. 2235-36) and the other the results of a double-blind, placebo controlled clinical trial of Botox for idiopathic overactive bladder (pp. 2416-22). The lead investigator on the latter was Roger Dmochowski, M.D., at Vanderbilt University. Among other things, it reports:

a) A leading side-effect seemed to be the need for self-catheterization, to deal with the fact that the Botox may have done "too good a job" or led to a significant amount of Post-Void Residual (PVR). The optimal dose for therapeutic results vs. this side effect seemed to be 100U. At that level, the incidence of self-catheterization was 11% of the sample for a median of 113 days. After that, it appeared to increase fairly dramatically:

150U = 20%, for a median of 57 days; and
200U = 21% for as median of 179 days.

b) For some reason, however, it went down for 300U -- 16% of the sample, for a median of 15 days.

What is not clear to me is whether the citation of a limited number of days (great as they are) means you can stop the self-catheterization, or whether it could even continue for a lifetime (i.e., has the "damage" or the positive/negative effect, whatever you call it, already been done)? Or if you stop the injections, can you stop the self-catheterization?

All I know is that I had to do it once (after they found some strictures via cystoscopy) for a period of four weeks, when a UTI developed, neither of which I liked.

I've been told that FDA has not yet approved Botox for this purpose yet (and thus it is not covered by Medicare {I don't know about any private insurance]). They told me it would have to be done every six months, and, if you are not enrolled in a clinical trial, that it would cost $1,000 per time. The downside of being enrolled in a clinical trial, of course, is that you don't know if you are getting Botox or a placebo.

I certainly don't need to know this, but are you enrolled in a clinical trial or having it done privately? If the former, this could account for the fact that the I00U and the 200U have not worked for you, if you were given a placebo -- although I think at some point they would have told you that.

Have you encountered any of what I am describing above? Have they said anything about the possible need for self-catheterization, and if so, for how long?

The clinician I spoke with (at another university) said they are getting "very positive" results from their Botox trials and that he, in fact, would expect that it might become "the standard of care" after the trials are completed (he said, 1-2 years). The editorial I referenced in the JofU (above) is, in fact, entitled "Botox in Urology -- Will it Become Standard of Care for Urge Urinary Incontinence?"

The lead investigator in the study, Roger Dmochowski, M.D., may be addressed as follows:
Department of Urology, Vanderbilt University, A1302 Medical Center North, Nashville, TN 37232; telephone (615) 343-5602; fax (615) 322-8990; e-mail roger.dmochowski@vanderbilt. edu . . . .

On the rest of the issues you noted, you and I have reached almost identical reactions. I will say that my Washington, D.C., urologist strongly recommended Botox as the first place to start after the medications have failed, although he didn't say anything about the external stimulation of the abdomen as cited by VGama (above). This urologist only parenthetically mentioned the possible downside of self-catheterization with Botox; he did strongly recommend Vanderbilt as a very good place to go. However, as you can tell I am very concerned about the possible self-catheterization side effect.

The other question I wanted to raise with you is that you said you had the 200U in October, 2010, and plan to have 300U in January of 2011. I've been told the frequency should be six months, and yours is a little bit less than that -- but maybe that's because neither the 100UI or the 200U worked in the first place.

Anyway, so good to get your experience, observations, and conclusions. I hope the above may help a bit (hey, this site does seem to work!).

Many thanks again.

BD

lion1
Posts: 241
Joined: May 2007

Self catherization has been explained to me as a risk--howvever, after my previous experiences my Doctor does not believe it will be an issue. But, 300 units is my final shot. I am being treated privately. This is no trial, and my doctor assures me I am getting the real thing. My insurance has covered everything---I am retired military.

My doctor seems to be really on top of this. I just hope it works. There has to be something out there beside surgeries that will get me better.

Surgeries cause all kinds of problems--which I am sure are not all being discusssed on this site. We really don't know the hell people are going through every day of their lives.

I count my blessings because the route I have chosen thus far, has been painless. But soon as someone starts cutting in you---no telling how long the pain will last. I remember my LRP---3 MONTHS OF PAIN.

Thanks for your thorough and informative response.

Wish you the best!

Lion1

BD
Posts: 14
Joined: Dec 2010

I appreciate your further reply, Lion 1 . . . . I'm sorry if I've lost track, but did you ever have the AdVance sling procedure (or any other kind)?

I know you were considering it . . . . Did you decide to set it aside and go with the Botox and the Interstim first?

BD

lion1
Posts: 241
Joined: May 2007

I am going the Botox route first----------------------I did not have a sling nor am I considering it at this point.

I don't think a sling really could help a person in my situation with the overactive-bladder.

Lion1

BD
Posts: 14
Joined: Dec 2010

Thanks for bringing me up to date on your decision re sling. Since I have both stress incontinence and an over-active bladder, some have said the sling could rectify the former, leading to the possibility of trying anticholinergic drugs again for the latter (once the stress incontinence hopefully is resolved).

I'm headed down on Jan. 14 for a consultation with another specialist, this one at the Cleveland Clinic satellite campus in Weston, FL (near Ft. Lauderdale).

Sincerely hope your 300U of Botox on Jan. 24 takes care of your problem entirely.

BD

lion1
Posts: 241
Joined: May 2007

I'll let you know how it turns out. Good luck on your visit also.

Lion1

BD
Posts: 14
Joined: Dec 2010

Want to convey special thanks to all of you who have replied (to my two postings, asking about 1) InterStim vs. Botox (or other effective means of solving severe incontinence) and 2 )Which to address first, stress incontinence or over-active bladder (when you have both, I understand it's called mixed incontinence). . . .

To VGama: You were the first (after two years of searching, and appts with four different specialists) specifically to cite external electrical neurostimulation of the nerve endings in the abdomen around the bladder, as one of the treatment options . . . and it is the one I have now chosen, after meeting with the Cleveland Clinic (Florida) specialist near Miami two days ago. Kudos and great thanks to you. (He also said, at least in my case, that the order in which the severe incontinence problem should be addressed [when you have both stress incontinence and an over-active bladder]is to attack the most predominant one first [in my case, the over-active bladder].)

To Lion1: As you can see, my appt on Jan. 14 went quite well, and I'm soon to start the 12-week, once-a-week external electrical neurostimulation. The specialist with whom I consulted said if it doesn't work (I pray and hope that it does!), the InterStim and Botox injections would probably be the next step(s). Have sort of a hard time figuring out why the InterStim would work if the similar procedure applied externally doesn't, but maybe the InterStim is more precise and capable of fine-tuning. I know you've chosen Botox injections right now, and hope your Jan. 24 appt with the 300U goes extremely well for you!

BD

tdorman
Posts: 21
Joined: Jun 2010

Have you started your external electrical neurostimulation treatment? Let me know if it how it works? I am scheduled to start soon. I had a visit a few days ago with my doc to discuss my incontinence. I have tried all the medicines for over active bladder and none worked. He gave a sample of Sanctura XR 60mg to try. After 3 days I went from 5 pads to less than 2 pads a day. Today 1.5 pads.

lion1
Posts: 241
Joined: May 2007

If Santura XR is working, why not keep taking it? Did your Doctor say it would eventually make your bladder completely react normal? 5 Pads to less than 2 pads is dramatic. If my Botox injections did that for me, I would continue the Botox. Can you explain your rationale? What am I missing in your post?

I tried all the meds--however, was never offerd that one, I'll have to ask my Doc.

Thanks,

Lion1

BD
Posts: 14
Joined: Dec 2010

Tdorman: Haven't started my external electrical stimulation yet (see my response to Lion1 elsewhere posted today, in response to one of his other postings saying the 500 units of Botox didn't work on Jan. 24). Hope to start this week or next.

Like him, I'd be happy as a clam if I went from 5-6 Depends a day to 1.5 (and I see you describe those as pads, rather than the full Depends), attributed to the Sanctura XR. And also like him, I've never before heard of Sanctura XR and plan to mention it to my urologist. But I still want to try the external electrical stimulation approach to see if I can get from 5-6 Depends a day to zero.

Let me know how everything goes for you.

BD

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