Interesting Interstim

In 2004 when I had the first interstim test I was excited about this brand new uncharted territory. I felt like there were limitless possibilities. Little did I know at the time that what was supposed to treat my IC would become just another chronic problem.

Over the years the interstim has given me my best IC moments and my worst IC moments. It has helped more than any other treatment but has also caused endless frustration and extra pain. I actually have bilateral (two) interstims and after I got my second interstim my symptoms were practically gone. My family even threw me a “Deni is Better” party! On the other hand that only lasted 3 months and I have had 12 surgeries JUST for the interstims. So when other IC patients ask my opinion on the interstim or bilateral (two) interstims I feel so conflicted.

Let me just remind you that I am not a doctor or any thing relatively close, I just know from experience and some research before I began the process. From what I can understand the interstim is a little device that sends stimulation through tiny wires called leads to the nerves connected to the bladder. The hope is that the stimulation will help control the bladders functions by some fancy magical technical trickery. It has been known to eliminate or at least minimize incontinence, urgency, frequency and some times even pain. 

There are several leads that are all positioned slightly differently as to give the patient options. After the surgery the doctor programs the new doodad to customize the system for the individual patient. They can change the speed of the stimulation, the pattern and which leads are working with what lead.

Here’s where my problem arises… the leads are placed so delicately that if they get moved even just a tiny bit it changes the stimulation drastically. Ideally I would feel it in the perineum area but if the leads move I can feel it any where from my back to my toe and any where in between. So when that happens they have to make a voyage back into my body through the same incisions and fix every thing just so I can potentially have relief until it inevitably moves again.

If you are going to live in a bubble the interstim is perfect for you! However… I got the interstim when I was just 17 while trying to live a normal teenaged life. Now I am 25 trying to live a normal wife and mom life. I have never been super active thanks to my IC beginning at the tender age of 13 but even with my relatively sedentary life its still extremely inconvenient to have a foreign object in my lower back. Here are some pictures of my interstims, you could imagine why it would be hard to keep them save when there in such a vulnerable, unprotected spot. (I can't believe I'm posted these... Proves that I am committed to this blog!)

My masterpiece... don't mind the pudginess. 

My bulging left interstim 

My right interstim doesn't poke as much

Another one of my left... not cute. 

I’m sure you’re wondering what types of incidents would cause this movement… for me it has been endless stupid things… My most shameful time was when I went on an innertube ride behind a boat, after my husbands warning, then hit a huge wave that sent my interstims into spasms. I’ll admit that was my fault but many times it hasn’t been. The interstim battery unit kind of sticks out as you can see in the picture of my interstims below. Once I caught it on a door handle which pulled the interstim and therefore the wires too. One time I fell down the stairs. Another time I got into a small car accident that moved every thing for some reason. Then after my pregnancy the wires moved, after I lost a bunch of weight the wires moved. Recently I was crouched down and stood up quickly the caught my interstim on this thing in the picture. 

Instantly I felt shocks on the inside and swelling at the actual site of the interstim pack. I turned my interstim off with my remote and iced the site immediately. Then this weekend, not two weeks later, I was wearing a dress at a comedy show and bent down ladylike to pick up my stuff off the floor and quickly stood up and caught my right one on the wooden arm rest causing the same reaction. However this time I was in Seattle, an hour away from my remote. I suffered the whole drive home feeling like a naughty yapping dog with one of those collars. I was being shocked all over my perineum area and my back ached where the impact happened.

So now I am still sore from being electrocuted, my back still hurts if I turn the wrong way and my IC is angrier than usual with both interstims off.

Last time I went to doctor my doctor x-rayed and checked my left interstim (see blog “It’s shocking”) and determined it was completely out of place, this was even before the TV tray incident. I had them both so low I couldn’t even feel the therapeutic taps but now they are both completely off and not to be pessimistic but I’m preparing myself mentally for my 13^th interstim surgery.  

In summary… the interstim, like any treatment is a gamble. However in this gamble you are putting a lot down. You are adding machinery to your body, the wires may break, the wires may move, you might hurt the site,  it might not even help at all. On the other hand you also might not pee your pants every day, you might be able to make it to the toilet, you might only have to pee 10 times a day, and best of all… it might even ease some pain. I decided it was worth the risk and continue to make the same gamble every time I head for the OR to get it updated and corrected.

I feel like I am still leaving a ton out but if you are considering an interstim and have any questions please don’t hesitate to ask!

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