Interstim trial this week

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I have an appointment to get the trial Interstim on Tuesday, and it'll be removed on Friday. My urologist's office warmed me that it can take several weeks for insurance to approve doing the permanent one if we end up going that route. I'm looking forward to seeing if it'll give me some relief from the pain and constant sense of urgency.

I'm nervous after hearing mixed reviews of Interstim, but I'm hopeful it's going to help.
 
@ltapilot I shall be very interested to hear how it goes as I hope to be having an interstim trial in the next few months. Phil
 
Thank you all for the week wishes!

I've wanted to try it for several years, but had to wait for the MRI-safe leads they released a few months ago. Then I was stuck waiting to find out if i needed my colon removed - my urologist wants three months with no other surgeries to really assess how it's doing if we end up going forward with the final implant. I'm in a holding pattern with my colon (waiting on a referral and a months-long wait for an appointment with the surgeon) so I can finally do the Interstim trial.
 
@ltapilot

I have been using the Interstim from Medtronic since about 2015 with good results. This past week I was able to take a 4-hour road trip without stopping! :D


To me, it didn't make sense that the doctor and salesman only require a few days for the external trial, but after permanently implanting the device and wires they told me it would take 2 weeks to get used to any changes I made to the channel (or program) or the amplitude.

I pray for God's will to be done according to your faith in Him.
 
I made it through the test implantation. It wasn't much fun - the doctor can only numb a little bit or it numbs the nerves and they can't get the location and intensity right. So it was very uncomfortable.

They had me undress and lie facedown on a table with a pillow under my hips. The nurse cleaned my lower back and upper buttocks with betadine, then draped me so only the area from the small of my back to the bottom of my tailbone was exposed. The doctor started at the bottom of my tailbone and counted vertabrae up to the right spot and marked it. Then she numbed my skin and put the leads in using a hollow needle so that the wires stayed behind when she took the needle out. Two leads were placed, which was the only painful part. Finally, she booked them to the electronics and increased the intensity in each one until I could feel it. The left one felt like someone pinching the left side of my anus, and the right one felt like someone poking me in the right side of my bladder. She stopped increasing the intensity as soon as I told her I could feel it, and reduced it again until I couldn't feel it.

The test unit is about 2x3x1/2 inches, and only uses the left lead. The right lead is just a backup in case we lose the left one. I'll use it for 3-6 days and if I like it, they'll schedule the real surgery. Every day I have to adjust the intensity to make sure I can still feel it, since the leads can shift, but then I can turn it down so I don't feel it.

We'll see how 3-6 days of no showering goes. Maybe I'll end up working from home. 😁
 
That sounds really rough, and I'm glad you're on the other side of the trial procedure. Here's hoping it works for you.
 
Sounds awful. Well done for coping with the pain. Don't think I could go through that. Hope it works for you.
 
I called my urologist's nurse yesterday morning because the spots where they put the wires had booked enough to completely saturate the bandage covering them. She was surprised, but because of my liver disease, my blood doesn't clot very well so I tend to bleed a lot. Then last night, I found that the take holding the wires in place has completely peeled off, so I had to go in first thing this morning and she retaped it. I think it was because of all the blood around there that it came loose, which is apparently not usually a problem.

I'm going in tomorrow morning to get the leads removed. It's helped some with the pain and urgency issues I have, so I think it'll be worth having the real unit implanted, but I don't know that it's going to be a magic bullet that will cure my incontinence.

One thing that the nurse pointed out is that the test lead are out in by feel, but the real ones are put in with X-ray guidance so they're more accurately placed. My test leads seem to be moving around a bit (especially since they came untaped) so the real ones may work a bit better.

In any case, I'll take anything that helps with the pain. I'll even put up with the incontinence if I can just not hurt so much.
 
Got the temporary leads taken out today. It wasn't fun, but it wasn't horrible either, and didn't take long. I didn't see as much improvement as I'd hoped, but it helped a decent amount with the urgency and maybe also the frequency. I told the nurse to go ahead and get the prior authorization from my insurance. I'll meet with my urologist to discuss it before we actually schedule the surgery, but if it helps at all I'm inclined to go with it. Since the leads are MRI-safe (at least in a 1.5T MRI machine - the bigger 3T machines are not OK) I don't see a lot of downside to going through with it, other than some pain during the procedure (I'll be awake and only numbed a little while they put the leads in, then they'll put me all the way out to implant the little box).

So, not a cure, but at this point I'll take any improvement. We'll see if it improves things enough that I can trust my bladder not to leak.
 
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