Saturday, October 27, 2012


Those of you following this blog already know I am scheduled to have surgery on November 12th to replace my remaining old InterStim, since it finally died. It was my second one and was implanted in 2004. Since this has come up, I thought I would write a little about InterStim for anyone that may be considering it.

I have 2 InterStim. The first was implanted in 2003 and the second in 2004. Last summer (2011), my oldest one from 2003 finally died and I had it replaced in August 2011. Before InterStim my voids averaged 60-70 per day. With InterStim, my voids average about 25-30 per day. It really helps me and I don't know what I'd do without it! It's not FDA approved for pain, so if pain a bigger issue than urgency/frequency you may not see good results. But if urgency, frequency or retention are your biggest issues you likely are a good candidate.

Back when I had my original test phase in 2003, it was always done as a surgical procedure under anesthesia in the hospital. Now, most doctors do it with just a local in their office. This is what I had for the test phase last summer before replacing the dead one. It’s not difficult; you are given a local. It’s a bit uncomfortable but tolerable. How long the procedure to insert the test wires varies from patient to patient. They are looking for a particular physical response in certain locations and, most important, the character of the stimulation must be comfortable to the patient; not all settings are. So the point of the programming session is to find the right location to get a comfortable stimulation at that location. So it can sometimes take time to achieve that.  Last year my test phase was 5 days; some doctors go longer, so ask. It is imperative that you keep an accurate daily voiding diary BEFORE the test phase and then also during the test phase. This is the only way you will have accurate data to help determine if full implantation is right for you. You do not want to make that decision based on just a “sense” of what your voids are before and during the test. This is a must and will tell the tale.
But if you determine the test was successful, then typically you proceed to full implantation which is most definitely a surgical procedure done under anesthesia in the hospital. You will want to be sure to discuss post-op pain management with your doctor BEFORE the surgery. It is, for 99.9% of patients, an out-patient procedure so if all goes according to plan, you will go home the same day. Recovery also varies by patient, but I would say I felt 100% within about 3-4 weeks and that the first 48 hours post-op are the most difficult, but we’re all different.

InterStim is not a cure and it is not unusual to need to have re-programming sessions; through the years I've had numerous re-programming sessions that always got me back on track. Since I have had the oldest one replaced, things have gone very well and I haven't needed any re-programming in over a year now. That is until we discovered old one #2 is now dead!

One piece of research I highly recommend is, if you are not a member of the ICA go to the ICA website and purchase the Spring 2012 issue of the ICA Update Magazine. There is an excellent interview with a physician that is extremely knowledgeable on InterStim and discusses all the pros and cons and explains when it is appropriate to try and for which patients.

One quote from the article by the doctor: “Certainly for me and my patients, it has been substantially helpful in a number of cases. I would say the success rate in terms of a positive significant reduction in frequency for my patients is at about 60 to 70 percent. InterStim today is not very invasive. I’m making only a couple of small incisions. That’s a big change from when I first started doing these in 1998. Then it was a much more invasive”

I strongly urge you to purchase this issue as part of your research. InterStim has changed considerably over the years and a lot of what you’ll find online is old info and does not reflect what is currently going on with relation to this treatment. Here’s a link to the ICA website where you can purchase back issues of the ICA Update (you want the Spring 2012 issue) as well as a link to the ICA website on electrical neuromodulation. There is more than just InterStim available today, so I encourage anyone thinking of this to do your research.

I hope this is helpful for anyone thinking of this as a treatment option. Let me know if you have any questions.

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