Nina is a courageous IC patient who wanted to share her story with Interstim with other patients. Her experience was, overall, a positive one. But she shares some wisdoms about going through the process that can be helpful to others. Nina is 25 years old, a beautiful mother of two and currently serves as an ICN Chat Team member, helping patients in our on-line chat room. We're very proud of her! - Jill O., ICN Founder

"My Interstim Experience"

You wanted to share your story on Interstim. Why?
I wanted to share my story so that people who are faced with this decision know what to expect. Also to let them know that there is a light at the end of the tunnel.

What lead you to trying it? What else have you tried first?
I had tried everything from diet modification to, detrol, ditropan, atarax, elavil, bladder instills of heparin and marcaine. I still could not get rid of that constant urgency feeling. My frequency was up to 60 times per day and I was waking up an average of 6 times at night, sometimes more. I also had some incontinence problems. I would leak urine all day long. I had a silicone injection in my sphincter muscle, but it did nothing for the leaking. The meds I was on dried me out sooooo much that I would drink more, thus having to pee more often. I felt like I had tried everything I could and was willing to try anything. At this point, I was willing to try anything! Reason being, I felt as if IC was taking over my life and it was unfair to my kids to not be able to have a mom that could do things with them. I couldn't even take them to the playground because I was afraid that I would have to pee and there is no bathroom there.

What did you to do learn about Interstim?
Well, I had done all the research. I read all I could on the internet, called Medtronic, the company who makes Interstim, and requested an information packet. I even went to a conference on the Interstim at my local hospital. I spoke with a woman who had this done. I understood all the risks , or so I thought. I weighed the consequences and decided it was worth the risk. With the support of my husband I decided to embark on this Interstim journey!

What did you hope that Interstim would do for you?
I hoped and prayed that the interstim would give me my life back, reeduce my frequency and urgency. I wanted to be more active in my childrens life and to be able to go places.

What type of trial did you have?
My doctor informed me that he wanted to do a staged trial. What's a staged trial??? This is where they implant the actual wires and then run them out a hole in your hip, you are then attached to a test stimulator for 5-7 days. He told me that there was, supposedly, less risk of the lead wires moving. These are the wires that are placed next to the sacral nerve in which the current from the device runs through. According to him he has better luck with this procedure verses the original where they put in tiny wires and they were not anchored down.

What questions did you ask your doctor prior to having the procedure
I asked all the questions I could think of, how many had he done? What limitations would this place on my future? What was his prognosis for ME? What was his success rate? How many had to be removed? What was the chance of infection? Was this totally reversible? And the biggie, would he remove it if I decided I didn’t want it? His answer was yes, by the way.

How did he explain the procedure to you?
Well one would think that I had asked all the important questions, right? Well, let me first explain how he described the surgery to me. He said that in the first surgery, it was to be day surgery and I should bring someone who could drive me home. He said that I would be under general anesthesia and that he would make a "small" incision on the tailbone and that they drill into the tailbone to secure the lead, he said there would also be a hole where it came out. He said I would go home on pain meds as soon as I woke up.

How did you prepare for the surgery? Did you have any special instructions? What was the night before like?
I prepared for the surgery by having childcare arranged. I also cooked and froze enough meals for a week. I had my house organized enough so that I was not tempted to do too much afterwards. The night before was a mixture of emotions that ranged from fear to anticipation. I was optimistic though!

What did you do the morning of the surgery?
Well, I made arrangements for someone to keep my children for a day or 2. They are 3 and 5. My husband took a day off of work. I went in and was prepped, they started an I.V., drew blood, etc. Surgery was scheduled for 10:00 a.m. I kissed hubby goodbye and they rolled me down the hall towards the operating room. That’s the last I remember.

What happened when you woke up after surgery?
I woke up in EXCRUCIATING pain! I mean, they gave me morphine, Demerol, and numerous other things and kept on giving me meds intravenously and I was absolutely sobbing! The recovery nurse was so sympathetic, she said that 1 out of 4 patients wake up this was. I found myself apologizing for "being a hard patient." She was sooo sweet and said that I had nothing to apologize for. She KNEW I was in severe pain. I explained to her that I had gone through 2 childbirths, one natural, a ruptured ovarian cyst the size of a grapefruit, etc and that I was no wimp! They called my surgeon to inform him what shape I was in and his comment was, "Yeah, I had a lot of problems getting the wires where I wanted them, I am not surprised." The nurse was shocked that he didn’t inform them earlier. They finally got me settled down after a million meds and finally a set of lidocaine patches placed around my incisions. Eventually, I was taken to a room where I was told to pee, drink some water and have some crackers, then I could go home. I was home by 3:00 p.m.

How was your recovery at home?
I got home and was miserable, on pain meds 24-7. I had an appointment a week after surgery to see how I was doing. I was totally shocked when I took the bandages off and saw what he had referred to as a "small incision." It was 5 inches long down my spine. I also had one to the right of that and, also, the hole where the wires came out. No wonder I was in so much pain.

Was the test stim a success? If so, why? What did you feel? How did you measure it?
The test stim was a success. I felt a twitch in my behind, just next to my tailbone. It runs down my leg and feels like you have a muscle twich. If you have ever had a twitch in your eye, that is how it feels. I kept a voiding diary and was pleased that I only woke up 2 times to pee at night. My frequency was decreased by 50% and the constant urgency was diminished too. BUT I was also in NO pain and was thinking that I would have no more bladder pain. But, I was fooled. I was on pain meds 24-7 for the surgery pain and that masked my bladder pain.

So, you decided to have the permanent implant? What was that like? How was your recovery?
This time I knew a little more what to expect. The second surgery wasn’t nearly as painful. Don’t get me wrong, it was no picnic, but not as bad as the first. I had a constant burning there where the device was for a couple weeks. Recovery, overall, was much harder than I expected. I had thought that I would recover quite quickly, but I'm now four weeks past surgery and still experiencing alot of pain. My nurse said that it would take six weeks to get back to normal. I sure wish my doctor had told me this ahead of time. I could have made alot more plans for childcare. I wouldn’t have been so scared when I woke up in so much pain and I wouldn’t have pushed myself so hard afterwards.

My advice to anyone considering this, be prepared for a 6 week recovery time. As I said earlier, I do not regret this. I am happy with the results but I do want people who are going into this to have an understanding of the recovery process. Don’t make the same mistake I did. ASK the questions I forgot (like what???? Could you make a list??) Please remember that this is a major surgery.

What questions should other patients ask before having surgery?
The most important questions that I forgot was regarding recovery. Ask your doctors how you should control the pain from the surgery. Ask what procedures you cannot have in the future (such as an MRI, and diathermy). Ask how long a recovery time you are facing.

Now that it's done and over, what do you want people to learn from your experience?
My conclusion is that people should be more informed. Yes, I would still have had the surgery but I personally think they should rename it to INTER-OUCH! I luckily have had positive results from this, and I do not regret having it done. Even if it had failed, I wanted to try. Good luck to all those who embark on the Interstim adventure in the future! I hope there is nothing but success.

Tell us a little about yourself!
I am 25 years old, married and have two children. Kayla is almost 6 and Joshua is almost 4. I am a stay at home mom now. At first I was very angry that my multitude of illnesses have stolen my career from me, but I have changed my outlook now, I am thankful to be able to watch my children grow up and be there for them. I also enjoy helping people through the ICN, and my local support group. I am in the process of getting my social security disability right now.