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

BD said:

Thanks for your posting, VGama . . . .
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

BD said:

Thanks for your reply re Botox experience, Lion1 . . ..
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

BD said:

Thanks for your further reply, Lion 1 . . .
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

BD said:

Good luck on Jan. 24, Lion1 . . . .
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

BD said:

Special thanks to all of you who have replied . . . .
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