New PreTrial Checklist from Medtronic

[icnmgrjill]

Hey folks.. I'm very happy to say that Medtronic reps (Ben & Janelle) met with me last month to talk about how to provide a better orientation to the procedure (including pain management, other treatment options, etc). In the process, we developed the idea of a "Pre Trial" checklist for patients who are considering Interstim. I'd love to see your comments on this. I think it's really GOOD!

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Pre Test Stimulation Checklist

1. Have you considered and tried other conservative treatments (not necessarily in this order):
a. DMSO
b. Elmiron
c. Antihistamines
d. Antidepressants
e. Hydrodistension
f. Pelvic Floor Therapies
g. Diet Modification
h. Pain care
i. Self help

2. Have you watched the InterStim patient video?

3. Have you read the patient guide to the test stimulation?

4. Have you talked with other patients who have experience with InterStim (both successes and failures) your physician may be able to organize this?

5. Have you discussed any concerns with your physician?

6. Have you discussed pain care both during and after the trial. Do you have a specific plan? If so, what is it?

7. Are you aware of what you should and should not do during the 3-5 day test stimulation period (See Patient Guide to Test Stimulation)?

8. Have you agreed a “safe word” with your physician to have the test stimulation procedure stopped if the pain is no longer bearable?

9. It may be advisable to bring a relative or friend to lend support and to drive you home.

10. Are you aware of the patient services telephone number?

11. Are you aware where to get support after hours?

12. Do you know how to operate the test stimulator?

13. Fill in voiding diaries before and during test stimulation!

14. Has your physician discussed the complications that can occur with this therapy?

15. In some instances (when the lead moves) a second test stimulation may be recommended.
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Comments? Suggestions?? Would this have helped you while you were considering it??

Jill

[Melanie]

Hey Jill,
This is great! It definetly would have helped me. I can't think of anything you've missed.
But if you need help giving tips for how to get through procedure and trial period, I have lots of practical tips. I'd be happy to share my experiences. I'm probably the most experienced Interstim trial patient, since I've had 3 regular trials and 2 staged trial procedures.
take care,
Melanie

[Nancy R]

Jill, This is great, very helpful, esp since I am meeting with my uro next week to discuss having the test trial. I had contacted Medtronics for info and they sent me a brochure on Therapy Comparison, a booklet with patients stories, and a list of physicians in my are that have experience with Interstim. Where can I get the patient guide to the procedure and the video?

-Nancy R

[Meghan]

When I was considering InterStim, the doctor and I went over all of the listed questions. He wanted to ensure that I knew what I was getting into. I have great confidence in my doctor, and am very, very happy I had a trial and then surgery.

[DebbieB]

Thanks for the information Jill!!!!

As well I went over this my doctor and we had a long talk and lots of tests before I even did the InterStim Implant procedure..

~~Hugs~~ Debbie

[Kara23]

Jill,

This is AWESOME!!!! I wish I had this before I went in for my trial.

Thank You


Kara

[Sandy]

Hi, This is a very good idea for people who are considering the Implant.I wnt thru 4 uros and had all the "other" routes. None of the uros mentioned Interstim to me. I found out about it on this board one night when I was surfing. Researched on the internet about it and spoke to DebbieB who had(only one in Canada I knew of) and she told me about her uro that did this and my family dr referred me immediately. Saw him within a week. we discussed this he looked at my history and then we went ahead with the trial(2) (the first one was very painful as it was too close to the nerve, then we tried a second and it took away the pain and the urg/frq decreased (the upper bloat pain went away almost it seemed immediately) and then I bent the wrong way and it moved or something becasue I kept turning it up and things did not changed, but the implant has helped me a great deal. I still have flares at times and still have to cath at times as well. Usually I have increased urg/frq and a tune up is done and that helps, but this time he is doing a urodynamics(had one with another uro before the stim) and then maybe from that they can program from there. It is trial and error, but I am one of the lucky ones and just have to be patient and there are many ways for the adjustments to be made. I have had this thing for almost a year and have had 4 adjustment. I don't really know if that is alot or not but every body is different

Hydrodistenstion was a nightmare for me as well as DMSO. Alot of pain affiliated with those two procedures

Sandy

[yvette]

Hi Jill! Very Good detailed list....I like it. I actually went thru this whole thing with my doctor 6 months prior. She also added the non-tradtional things such as accupuncture. She made me do all these things becasue A) she wanted to make sure we tried all other venues first before surgery B) Insurance may not cover this if they feel you could have tried all else.

I think this list could be very useful and helpul, especially in those cases where the uro knows nothing about Interstim.

One more thing, I think it is VERY important that doctors/uros/reps tell IC patients that Interstim is not the last step and there's nothing else. I was definetely made aware that Interstim would not be the "be all, end all" of IC. And in fact, started looking/planning more treatments after surgery. BTW: I'm going to give Rimso 50 a go very soon. Thanks Jill for taking the time to meet with the reps and put together this list, I think it is wonderful!!!
Hugs,
y.