My trial update & questions

[rjyoon]

I've snuck into work to get to the Internet. I had the trial on 2/4/04. In the O.R. I had "textbook perfect" electrode placement, but by the time I was in recovery, it'd moved. Not much pain afterwards, just had to use a bit of Tylenol. Stimulator wouldn't stay on for more than about 3 hours. Tried three different stimulators with the same results. Dr. thought that wires were messed up, so had surgical revision on 2/11/04. Some muscle pain after that one (probably my fibromyalgia). Stimulator stayed on for over 48 hours, then started turning itself off again. My latest theory is that with the cold & dry air, static electricity is turning it off. Has anyone else experienced this or know what to do? My doctor has no clue. I've talked to Medtronic & they don't know. I am not allowed to contact the local Medtronic rep directly. Because the stimulator is not staying on, it is hard to tell if it's working or not. There are times when my volumes are much better than normal. I'm still waking up way too many times at night. I did some analysis & decided that it had improved my average voided volume by 30cc, which isn't enough for me to go through with the implant. I'm scheduled for my next surgery on 2/18/04, but don't know if it will really happen then.

I would appreciate responses by PM, as then I can read them at home. I have a follow-up appointment on Mon., 2/16/04, so am trying to get information beforehand. Thanks for any ideas you might have.

[tigger_gal]

i sent you a pm
brat

[rjyoon]

I met with both my uro & the Medtronic rep today, and we decided to continue the trial for another week & then see how things are going. I went out & bought Static Guard yesterday, sprayed the heck out of my p.j.s last night, and the stimulator stayed on all night. Hard to say if my static electricity theory is correct or not, but using Static Guard won't hurt anything, so I'll continue.

My uro told me they took an x-ray during surgery on 2/11/04, and the electrodes were still where they "should" be, so he's not concerned that I'm feeling the stimulation in a different place now.

I've started having minor leaking incidents thanks to the trial. Anyone else had this? Does it stay the same, or change over time? It's not bad, but it's a bit annoying.

I should clarify that I'm measuring symptom improvement over how I was when I was on medications/external neurostim. My uro is measuring over the baseline when I was off medications. By that measure, I have over 50% improvement. I'm thinking that if I add the medications back (e.g., Detrol) maybe it will add up to a more significant improvement. Has anyone else dealt with this sort of thing?

The Medtronic rep was trying to encourage me that if I'm seeing some symptom improvement, it will likely continue to improve for the next 18 months or so. How much improvement between the trial results & "final" results have others noticed?

Once again, responses via PM are appreciated so I can receive them at home. Don't know when I'll sneak back to work for the Internet again. Today's a holiday, so that helped.

[littlebear]

Hi Ryjoon, I hope that you've received lots of pms answering your questions. I know that you might not see this, but I thought I'd post a few lines anyway to wish you luck with the rest of your trial. Good luck and best wishes, little bear