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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It's shocking...

A few weeks ago I felt a pinch deep inside… I ignored it until a few days later when it had transformed into a full blown shock. I turned my interstims off with much hesitation. Every one tried to convince me to go to the doctor but I knew the old routine and the bad news that goes with it but I just wasn’t up for it yet. So with my interstims off the pain continued and the incontinence intensified.

Finally a few days ago I got out of the car, did a jolly little hop/ skip and felt like my interstim dropped out of my back. I knew I had to get things checked out.

Today I finally gave in and went to see my beloved urologist, (after going to her for over 10 years she feels more like my friend than my doctor). I was right, the interstim wires moved. After doing an x-ray we found out the interstims leads had some how pushed in deeper, closer to the nerve. So every little stimulation felt massive and painful because it was right on top of the sensitive nerve.

Dr. Jacoby reprogrammed my troubled interstim so that the leads that were running were the ones furthest from the nerve but even then I had the level on .60 and could feel it like it was at a 10!

The whole time we reprogrammed I knew what was coming… the dreaded impendence test… I think of it as a virus scan on your computer but it checks to make sure there is no damage to any of the tiny wires running through my body. It always hurts when she does this test… it runs through all the programs so I feel little bursts of electricity all over…

Little did I know today would be the worst impendence test ever because of the close proximity to the nerve… when she started we were chatting as usual when suddenly my body convulsed and threw itself in the air. I instantly started crying because the sheer pain was too immense. I was sure I was being electrocuted and was pleading inside for it to be over. I looked over at my mom who was also crying and looked so scared, Titus was staring at me like I was possessed and my doctor was reassuring me it was almost over. Finally after about 30 seconds that felt like 30 minutes it was over. My body ached after my internal firework show but I was so thankful that it was over and the test showed every thing was ok.

We talked about a new treatment we could try if the new interstim settings didn’t work and she sent me on my way. As I shifted to different positions the rest of the evening the crazy high stimulation was too much, I turned it down to .30.

Then I lost control of my bladder and headed up to the shower… I had been in here for about 3 hours when the shocking started again. I yelled for my Mom to bring me my remotes and I turned it down to .15. I know it will be worse if I turn it off so I am trying to withstand some shocks… but seriously, this is so annoying!

The thing that is supposed to be treating my symptoms is causing new symptoms… what the heck?!? My poor bladder is exhausted after this crazy electrically charged day and the pain is immense. I took some vicodin to try to take the edge off but now I just feel drugged and nauseous with just as much pain and still in the shower!

I really didn’t want to post another depressing blog because I keep hearing how sad it is and that’s now what I wanted it to be… but this is my life people! I’m not sugar coating it but I’m not exaggerating either… I wish I was.

Surgery punch card... Next one’s free!

When I was 13 I felt a new and scary pain that my young, unsophisticated, and N*Sync obsessed brain couldn’t process. I just kept saying to my Mom and the doctors that my “stomach” hurt. Of course they did lots of tests and sent me to a gastroenterologist who decided to do a colonoscopy and endoscopy… which is where they send a camera on a voyage to my tummy through, um, both passage ways. They did the procedure at Mary Bridge Children’s Hospital so they let me have my Mom in the procedure room until I was asleep. Then in some morbid way of making me feel in control they let me inject the anesthetic into my IV. I looked at my mom and said “oh, it feels…” then I literally passed out. My Mom starting crying in her minimalist hysterical way and the staff assured her every thing was fine and she went on her merry way. Who knew that was just the beginning of being put to sleep like a friendly yet aged golden retriever.

The next stop was a gynecologist who decided that I must have severe endometriosis. So they decided to do a laparoscopy where they make 3 little incisions- 2 on the bikini line and one in my belly button, then they go in and check out my girly innards. Turns out the kindly, intelligent doctor was correct, I had severe endometriosis. Once again I will use my non-medical and always quirky Deni’s Medical dictionary to define. Endometriosis is a disease in which pesky, uninvited cells attach themselves to the ovaries walls and flourish, wrecking havoc in their wake. (This is strange because I tend to kill any plant I come in contact with but call me Farmer Deni when it comes to growing painful rebellious cells!)

Around this time I started noticing pain with urination and they schlepped me off to an urologist who also needed to put me under for diagnosing purposes. So he performed a cystoscopy to check out my bladder up close and personal. This one they went up my urethra with a camera… fortunately I was asleep for that one as well…

Turns out… that Dr. was a chump so we moved on to greener pastures and after shuffling around we finally found my beloved Dr. Karny Jacoby based in North Seattle. She never doubted a word I said and agreed with the chumpiness of the last urologist so she decided to do another cystoscopy… this time she knew what she was looking for and diagnosed me on the spot with interstitial cystitis.

So from this point on we had our mission… Treat Deni’s IC… we just didn’t know how. After trying every non-invasive and relatively easy treatment Dr. Jacoby decided to bring out the big guns and implant an interstim device, which is a little pacemaker looking thing that is implanted in my lower back with wires that stimulate my sacral nerves to help with incontinence, frequency and urgency.

That step was a huge one that involved lots of little steps… first they installed a temporary trial one that had a wire coming out of my side and attached to a little external machine for a couple weeks. Then when I decided I could live with it they went in and placed it in permanently along with a matchbox sized battery pack. Each surgery they put me to sleep for the slicing and dicing then wake me up so I can tell them where I feel the stimulation. Usually they give me great drugs that make me forget it all but unfortunately a couple times it hasn’t worked and I have been scarred emotionally by what goes on in that OR when they think you’re asleep…

At first I thought the interstim may very well be the ticket! It seemed to help a ton but those tiny wires (or leads as they’re called) are placed so perfectly that my clumsy self tends to yank them out of place frequently. So after that I had 4 revisions surgeries to put the little leads back in their exact, perfect spot.

Then in 2008 I started having all sorts of extra pain and went to my gynecologist again. (I was starting to get very familiar with the common species of fish in waiting room aquariums by this point.)  He decided to perform another laparoscopy to check out my ovaries and laser off any more flourished growth that might have crept its way back. This was the surgery that he diagnoses me with level 4 (out of 5) endometriosis. I’m just saying… if this was the Olympic, I wouldn’t be complaining about that score! USA, USA, USA!

The year after that I decided to go for a nice innertube ride behind the boat and knew instantly after hitting a wave I was in for another surgery. This time when we went to break the bad news to Dr. Jacoby she brought up the idea of going “bilateral” or in other words… getting a second interstims. So we did another revision on my first one and she added the temporary tail while she was in there. Then just like clock work, two weeks later I was back in to get the permanent one installed.

I managed to keep them in check for 6 months until I was sent back to my friends at the OR for a revision on my new interstim. Then just a few months after that… I was back in for a double revision… which was NOT an enjoyable experience having both sides operated on. I was forced to lay flat on my face for a week until I could manage to lie on my side for a few minutes.

Just a few months after that surgery I found I was pregnant! So my next surgery was a scheduled c-section because of all the perfectly tuned wiring running through my body they didn’t think I should attempt labor. Then 2 months after I had my angel baby I was back in my home away from home to reposition the interstims after my fat pregnant body and kicking fetus destroyed their placements.

Just when you think you couldn’t take another surgery (tell me about it) there is one more… Do to losing a bunch of weight after having Titus and possibly doing too much too soon after the last surgery my faithful Dr. was slicing me open and fixing me up once again!

Sheesh… so that’s it! My list of surgeries… More are inevitable and my Dr told me that they even have new technology coming out that would only require one battery so less incisions and therefore shorter recovery, that’d be nice!

Also coming up is the dreaded hysterectomy that has been leering since the day of my endometriosis diagnosis 12 years ago…   I hope to pop out another baby before that day but either way I know that my body will have more scars from incisions and stubborn IV’s. I will probably have more foreign objects tossed in my body like that junk drawer that you find your missing marbles in.

Surgery is always hard on me… the anticipation, the surgeries when I’m forced awake to guide, every recovery, the narcotics after surgery and the process of getting off those narcotics… and then as of the last 2 surgeries… the not being able to pick up my sweet baby boy or take care of him or nurse him.

Every surgery I go in thinking “this is the one!” thanks to all the support and motivation from my loved ones… and I go out thinking “this better be the one, I’m never doing this again. If this isn’t it, heads are going to roll!” I know if I stopped being positive I would break down… so I know these surgeries are worth it and its all part of the IC game!