How do you know if Interstim is right for you?

[mlzippy7]

Just wondering to those who have had the interstim how did you know it was right for you? I know it is the last resort and I have read all I can online here.
My doctors have never pushed me as they really let me make my own decisions as they know I would anyway! We tried every just about everything they can think of. My urologist, my primary doctor, my pain doctor. They think the interstim may help as I have to urinate every 5-10 minutes around the clock for many months now.
I was just wondering to those of you that have it what do you think? I am really scared but would love to get some of my life back. I have severe pain also and I know the interstim is not for pain but for the frequency.
Thank you for any thoughts!!

[armslee]

Hi MLZ-
I too am seriously considering an interstim trial. I go back and forth with my decision based on how well my overall health is at the moment. But my frequency/urgency and spasms have increased and I think the the interstim may be for me.

Waiting to see your responses and praying you will find peace

[Sarojini]

It's rather hard to tell someone else when the right time to get the Interstim is ... it's a very personal decision, and no two people make it the same way.

I know that I originally thought I would never have the Interstim placed. I tried every med out there, and medications did help me a lot -- I went from urinating, on average, over forty times a day to going about 25. Cutting it in half was a big step for me, so I managed it with meds only for quite some time. Plus, I am a pain patient as well as a frequency/urgency patient -- and since the Interstim is not approved for pain relief, I wasn't sure it was worth going through a non-trivial surgery.

Still, 25 times slowly seemed less and less acceptable; it would interfere with my job, mess with travel, prevent me from doing things I wanted to sometimes... I'm sure you know the drill. When I flared, it was even worse.

My doctor has done many, many Stim surgeries and he brought the idea up and said to just think about it. To see if I'd be a good candidate for the surgery, we did a urodynamic test and found out my bladder function was terrible, and after about six or eight months of thinking, talking to family, and more thinking, I told my doctor that I would try the InterStim.

I knew for sure that the decision to go for it was right when I got a letter in the mail saying my insurance had denied the procedure... I felt sad, like some kind of glimmer of hope had been taken away. Of course, my doc got on the horn and I got a second letter from the insurance company saying it was approved a few days later... but that first letter was the thing that made me know for sure.

I am lucky -- my Interstim has been wonderful and has worked since the Medtronic rep first turned it on in recovery after the trial leads were placed. As I mentioned, I still require some meds and pain management, but I urinate 6-10 times a day now (flares will increase that a little more).

This is how I made my decision. My advice is to keep reading, talking with those you trust, discussing it with your doctor, and checking out Medtronic's website. Keep thinking about it and thinking about it. Think about the big questions ("Do I want something inside me zapping my nerve?" and the like) and yes, even the small silly ones like, "Can I deal with having a scar on my butt?" And, as you are thinking, something will happen -- the fates will speak, I suppose -- and you will know what you want to do. Just like my reaction to the initial insurance denial, something in your heart will stir and whisper "Yes" or "No" to you.

:) :grouphug:

[armslee]

Jen, thanks so much for your thoughtful insight. I am seeing Ragi in a couple weeks and we are going to discuss the trial date then. I have gone back and forth soooo many times with do I really need this when I am having "good moments" to, what the heck was I thinking reconsindering during my most excruciating.

Hope everything is going good for you!