View Full Version : Need help from InterStimmers
01-18-2005, 02:52 AM
I really need someone to tell me what kind of sensation I should feel in my butt or vagina. My InterStim was implanted in Nov.2003. It worked well for the first two months, then suddenly stopped working. When it worked fine, I had a "pull" feeling above my anus. Now I can still feel the stim, but the pull feeling is gone. I have tried many repgrammings and none has worked welll so far. I am so frustrated. :headbang:
My doctor doesn't have much experience, so I really need your input. Do you have to feel the pulling sensation in the vagina or anus for the stim to work?
My doctor told me if it didn't work in the next 6 months, he suggested me to have a revision. I asked if there was a trial again, he said it wouldn't be necessary. He would just take the lead out from S2 and place a new lead in S3. His theory was if S2 didn't work, S3 might do. That idea without a trial really scares me. Did anyone here with InterStim have a successful revision?
Thanks so much for your help.
01-18-2005, 03:22 AM
Peiti Hi I am having sorta of the same problems you are having. When I feel the "pulling" I usually feel mine in the vagina. But I dont believe that you nec have to feel the stim for it to work correctly. I have been told that if your Interstim works right you do not have to feel it for it to work. Now that being said....
I had mine done in 2001 like you mine worked great for awhile....now it does it even though I feel it when it is on it does not work for me anymore. I have had MANY reprograms also. But my system also curls all the toes on my left foot under and at times when I have to have a bowel movement I will be shocked so bad the unit has to be turned off or I cant move to get to the bathroom. My situation is I have lost my insurance as I am getting SSD was approved in Nov 2004 but still waiting. Any way when I lost my insurance the dr that did the unit refuse to return my calls. I then went to our state free hosptial (if you are unable to pay for care) but it was 9 months later before a doctor came that could help me. He believes that the lead wire moved on me and wants to fix it. I am not sure I want this. I am thinking that maybe this happens often and I dont want to have to worry every year or so if my unit is going to quit working or not. I dont want to be in the situation I was in last year where I had this thing and no one would help me. I am thinking of just removing mine.
I tried to have people to think of the long term use of the interstim before getting one...I to believe at first it was my godsend now I dont and I am really mad b/c if I knew in the long term it would end up this way I probly would not have done it. Best of luck in what you do and I will pray for you.
01-19-2005, 05:37 PM
Hi there. My medtronic rep and urologic surgeon told me to set it until you feel the vaginal throbbing and then turn it down to where you don't feel it anymore. It's not supposed to be uncomfortable but it also needs to work on your symptoms of frequency and urgency. I would turn yours down until you feel no sensation. Mine is set on 18 (1.8) and I feel no pulsating, not vaginal throbbing, toe curling and it helps, I sue to pee/urinate 50-60 times per day and I'm down to 8-12, sometimes a little more during infections or flares. It doesn't have to be painful or for you to even feel it to be working, that's how mine is set and is working wonderfully.
Call you medtronic rep and talk to him or your urologist and tell him what's going on, that just doesn't sound right to me at all.
Good luck and keep us informed, okay? I just had mine put in on December 27th, the permanent implant and doing great.
01-20-2005, 04:18 AM
I can't stand the pulsating, so I keep it to where I barely feel it. I only feel it in my butt cheek, and it works for me.
01-20-2005, 05:13 AM
Hi Peiti: You do not have to feel it in a certain area for it to work. It just has to work for you. I kept getting the advice to turn it up only as far as I could stand it, and it should never be painful.
I know its frustrating. Hang in there....can you talk to your rep? Maybe you just need to keep going in for adjustments til it gets to where it needs to be.
Good Luck! :)
01-20-2005, 06:57 AM
I agree with Yvette you don't have to feel the sensation...
I have not felt it in over five years..
Peiti are you getting some results from the InterStim Implant???
If you feel a "pull" feeling above your anus then it is just to close to nerve and an adjustment will move it away..
I just found out that I have my on the S4 and all this time I was telling everyone I had it on the S2 , how :loco: I was I guess... :hmm:
Just PM me Peiti if any more questions alright..
01-23-2005, 03:01 PM
I also have the interstim but it don't work for me i was wondering if anyone experince a sudden shocking at where the inplant is . Eva
01-29-2005, 05:19 PM
I feel the sensation on the outside of my body, in my crotch. I had to turn it up well past the point where I felt it in order for it to work. Eventually I got used to the feeling, and now I hardly notice it any more.
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