interstim failure

[carlin kammerer]

I had my interstim placed on Oct. 8. It has absolutely done nothing but cause pain. Has anyone had their interstim removed after the trial period? The medtronic rep said mine was placed right to left and I could have my doctor try placing it left to right. Does this make sense to anyone? I am very depressed that it did not work. Any suggestions?

[rjyoon]

I'm guessing that the left to right, right to left, bit has to do with where the lead & IPG are placed. As a candidate for Interstim, I don't speak as one who's been there. I am terrified in being in your position, going through surgery & not having good results.

[tigger_gal]

HI there,
did your trial work? did you have the stage trial, where they implanted the wires? if your trial did work for you I am having a hard time understanding why it is not working now.. Have you gone in and have your doctor reprogram you??
please keep us posted:)
Brat

[carlin kammerer]

yes, I had the staged trial where the wires are actually placed in my back. I still don't understand why the entire surgery hurt so much. I thought I would only feel vibration or pressure, I felt total pain. Like a very severe shock. Like needles in my private area. I am scheduled Nov. 12 to have the thing taken out or implanted permanetly. I have tried many different settings. The medtronic rep calls me every day. I'm just wondering how many people get the trial and then don't go on to have it implanted.

[tigger_gal]

Carlin,
If you don't have the implant yet just the wires and you are feeling pain, and the settings have been changed, I personally would not get the implant. This dose not sound right to me by any means. You may cause your self more problems then you wish to have by having the ipg put in. You can (if you want) request them to do another stage and replace and move the wires, but I think I'd rather have it all removed before scare tissue builds up around the wires.... I imagine there have been a few that it hasn't worked for them, or it did and stopped. have you tried turning it down till you do not feel it? You don't have to feel it to work.
best wishes to you and please keep me posted.
Brat

[ICNJess]

Hi Carlin--

This is puzzling to me. With my trial, it did not hurt at all. I was able to keep mine at a comfortable 5 or 6. Anything above that was painful in the vaginal area.

Do you think that maybe it is on the wrong nerves? I don't think it should be painful. I have the permanent, and it's not painful, I don't even know it's there half of the time, unless I go into a store where there's some kind of strange electric currency and then I get a nice little jolt!

Keep us posted.

Hugs and love,
Jess

[tigger_gal]

Carlin,
I had mine on at just 2 1/2 to 3 any higher I got pins needles and pain... I am sure if you are having pain at a low setting then this is not for you..
You have the stage trial now, why are they doing a 3 to 4 week trial on you? My tria was 4/2 and my implant 4/16?
OK girls an Guys, any one have they stage and not go thru with the implant? We don't have much time before her surgery.
Brat

[tcbc1989]

Hi...I had my stage 1 implant for 2 weeks and developed a HORRIBLE infection from the incisions. I believe that stage 1 implants are not to be left in more than 7 days....am I correct? Be careful and observe for signs and symptoms of an infection:fever, swelling, drainage and pain. The only symptom I had was terrible lower back pain in which the doctor thought it was a pulled muscle since I have always had lower back problems to begin with. The day before my stage 2 surgery (the stage 1 worked GREAT for my retention), I developed massive amounts of gross drainage from the incisions, which in fact, I kept clean. Be careful!
If stage 1 doesn't work on the lowest settings or you are uncomfortable with it at those settings, but it works for your bladder problem, I wouldn't go through with the 2nd surgery. It can be very uncomfortable if you cannot lower the threshold to where you can barely feel it.... I have been back at the uro doctor's office 5 times since my implant in June and had it reprogrammed because the sensations were intense in my rectum. There are a tremendous # of combinations of settings that can be tried to give you a comfort level that you can live with. You just need someone patient enough to work with you. Good luck!

scream
Tina C.

[tigger_gal]

HUGS Tina,
No most stage trials are 14 days. When they put the lead wire out the left side and the implant was going in the rightside I questioned it and they said just in case an infection starts where the lead is. It actually is not uncommon. I had my stage on the 2nd and then the implant on the 16th, and no infection thankfully.
Brat

[tcbc1989]

thanx for the hugs...but thank goodness i am doing better....tina

[littlebear]

Hi Tina. Thank heavens there's a happy ending to your story! I'm glad to hear that your implant was a success and that you're feeling good. I hope that Carlin is feeling better too. All the best to you both, little bear

[carly]

Yesterday was the worse day I've had in a long time. The only time I cried more was when a family member died. I realized that the interstim is not going to work for me. After crying to the medtronic rep and my doctor, they moved my surgery up from Nov. 12th to Wed. Oct. 29. I am so depressed that it didn't work. I question though why they would have left it in so long between surgery's. I have blisters all over from the dressing. I will now begin to research bladder removal as I have tried everything and nothing has worked. Thank-you for all of your prayers and concern. Carlin

[auntiedeb]

grouphug grouphug grouphug

[ICNJess]

Carlin--

I am so sorry that the implant didn't work for you! :( I wish you lots of luck in the future, if you go through with bladder removal and what not. Keep us posted.

Hugs and love,
Jess grouphug

[Iris]

Carlin, sorry to read that your implant did not work for you. Please let us know how you are doing, you sounded so sad in your post. Please take care, and know we are all here for you, and do hope that something can be done to help you out, hugs Iris grouphug

[carly]

well, I am crying all over again. My dr. office just called. My appt. next week is to see the doctor. My surgery to get this thing removed is still Nov. 12. In the mean time a scab is forming around the wire. The blisters are driving me crazy. I don't understand how there can be so much time between the trial (Oct. 8) and the removal (Nov. 12) Thanks for caring

[Teri]

{{{{{Carly**********I felt the same way you are feeling only mine was a 4 year process. You have every right to be upset....just remember~ you are not a failure, the device failed to work properly for you. For some of us, no matter what your uro does, the implant just isn't meant to be.

sending tons and tons of gentle hugs~

[carly]

Teri, has anything else worked for you? Is the removal painful? I assume mine won't be as painful as yours because you had the actual devise implanted and mine is just removing the trial wires.

[carly]

Today is Friday. My dr. office just called. They asked me again if I wanted to try doint the trial again with the wires going right to left instead of left to right. Has anyone heard of this working? At this point I said no. I really need to take a hot bath. That helps my pelvic pain so much. To do the surgery all over again, I don't think I could take it.

[peiti]

Carly:

That is also my question, too. I told my doctor if I could have the lead from right to left cause I felt the nerve on my right butt has something to do with my bladder control problems. He still put it in my left. I have the stimulation on my left side now which I pray it will work for me, too. Medtronic rep told me there was no difference between right to left or left to right. Well, I don't know if that is true.

My lead was put in on 10/22. I will need to be hospitalized on 10/30 to place the InterStim in or take the lead out. My dr said only a week's test in case the place where the lead comes out got infected. I am also on 3 pills of anti-biotics a day to prevent me from infection.

[Teri]

I am sorry but I don't understand what the left to right or right to left means :confused:

I had my original implant surgery done 10/99...I had the "OLD" staged trial and the dr hit the proper nerve within minutes. Went ahead with the surgery to implant the leads and the device. Had wonderful results for 18 months but my big toe curled from day one. For me, it was worth it because the device was working. After 18 months the device stopped working (even tho by that time 3 toes were curling) I worked with a rep for an hour and a half trying to get stimulation from the device and there was nothing. I waited 6 months for my uro to schedule me for a revision and he never called. This really ****** me off because since he 'dropped' me, I was listed as a sucess for him and I was NOT.

At the 2 year mark my current uro did the revision. I had zero results but since the device was already implanted we finished the surgery. Just short of 2 years later I had the removal. There was discomfort but no real pain involved. TONS AND TONS of emotional pain but no real physical pain.

If I had it to do over again, since the "staged" trial of my revision did not work, I would not have had the surgery completed. The emotional toll it took on me for all of those months praying it would find an adjustment that it would work on was overwhelming.

[tigger_gal]

Carly,
I have heard if they moved the wires from left to right or right to left you can get better results, I don't know if they use a different nerve or what. to me if they "switched" sides they would be switching nerves, because it would indicate that it was put on the wrong one. since you are undergoing so much stress please call the rep and talk to her and ask what she/he thinks. Go with your heart, if you want it removed then do so, I am sorry you got no relief. Like teri said some people the interstim just don't work for.
Brat
(had to edit my own post lol I didn't type as fast as I thought)

[DebbieB]

Well I am totally confused all together on what the left to right or right to left means ??? :confused: :confused:
I with Teri, all this makes me really wonder what the heck they are doing on the "staged trial"
As Teri said I also had the "OLD" staged trial done and when they did it with a needle they found the place right away when they did the trial..
This is sure overwhelming when I read all of this and I beginning to wonder if these doctor's know what they are doing :confused: :confused:

~~~~Debbie~~~~

[littlebear]

Hi Carly, I don't know anything about the right to left/left to right question, but I wanted to let you know that I'm so sorry to hear about all you've been going through. It sounds like things have been really tough. I agree with Brat, your heart will tell you what's best for you when the time comes. Sending you lots of love and support, little bear

[tcbc1989]

To Carly and friends angel ,
I will be thinking of you and say a prayer that you find something that will help you through this difficult time.....
thanx to all that have supported me...
I am still doing great..
Tina C