What complications did you experience?

[icnmgrjill]

Let's see if we can put together a list of the common complaints that patients have had after having the trial and/or implant. For those of you who HAVE HAD COMPLICATIONS, what did you experience???

Jill

[ICNJess]

I don't know if this is my fault or not for not researching it more, but I had an ultrasound, an internal one. I turned my stim off, and then when I came home after the ultrasound, I turned it on and my toes were going nuts. Then I got pins and needles feeling in my leg where I couldn't walk. So I turned it off, and it went away. All I needed was a reprogramming thankfully, but the ultrasound messed up my stim. I had no idea it could do that with the unit off!

[rjyoon]

During the trial: External neurostimulator box kept turning off. Thought it was the wires & had surgical revision. Turned out to be static electricity shutting the box off. Used Static Guard on clothes & fixed the problem (my pastor's idea!). Supposedly the first time Medtronic & uro heard of such a thing. Not happy about unnecessary surgery, so want to warn others.

[carly]

Besides not working for my frequency, I had a lot of shocks. The surgery itself was very painful for me. I did not think it would hurt that much.

[Teri]

So many of you know my story so you can just skip over this post. For those who don't know, after having 18 months of success (I did have a very annoying pull of my big toe on the side the lead was connected) the unit quit working. My medtronic rep worked with me for 1 1/2 hours trying to get it up and going again but it was hopeless. I thought my surgery was being scheduled to have a revision, instead, I ended up being dumped by my uro and ended up having the revision done by a dr who my original uro had trained (and who I believe sat in on my original surgery)....this dr is still my uro and I think the world of him. In my opinion I was dumped by the original surgeon because if he would have done my revision, I would have been listed as a failure in his records and he didn't want that.....he was only interested as long as I was a success....that's why I don't trust the "studies" they say are being done.

While on the operating table for my revision surgery, my uro was (at my request) removing the old lead because we were going to use the other side and I didn't want the wires left in me (we decided to go thru the whole 'trial' all over again since I had nothing at all coming from the unit) I woke up screaming on the table because something in my back was hurt and hurt badly enough to wake me up. It was so hard for me to explain that I was in horrific pain because I was so groggy and with the tube down your throat, it's pretty hard to talk. My trial was horrific. I was a complete emotional wreck and I was in so much pain. I was completely shocked because with my original surgery I was ready to cut the grass after a week....with this revision, I wasn't able to sit behind the wheel of my car.
My trial was a total failure. No matter what the medtronics rep tried to program me at, we got NO results. I didn't know what I was going to do until the last second but I figured, everything it in there, I may as well give it one last chance and we went ahead and completed the surgery. The recovery took forever. I aways felt like I had a severe flu. Went from one dr to the next dr. Finally, my Neuro told me that it was almost as if my body was trying to reject the foreign object in my body.
Meanwhile, I was driving over an hour each way to have my device reprogrammed weekly, then e/o week, then monthly, then, after a year, I had to give it up and admit that I had lost and it wasn't going to work no matter what we tried.....(somewhere in the middle of all of that my medtronics rep told a patient at another office that I wasn't getting well because I didn't want to cussing cussing HUH!!!!)So, I had the unit removed. Much to my surprise, all of my flu like symptoms stopped. My fibro sysmptoms got better. I did end up with something that I hand't planned.....remember that pain that woke me up on the operating table??????
I have lived with that pain every day for 2 years and 4 months now. My quality of life is much worse than it was before any of this interstim stuff started.....with no hope of this "new" me getting any better I live on high doses of pain meds and the favorite thing in my life has been taken from me....my grandchildren. I am no longer able to watch them and spend long hours with them as I use to. Okay, people are saying, "she had a hack for a dr" or "she should have done more research." Welp, the only thing that I should have done was READ before I signed my name to that surgery consent form that tells you what might happen. We always think that those complications don't apply to us. They only apply to the other guy....well, at any given moment we can become the other guy.
I have an excellant uro. I would never think of changing dr's. It's just something that happened and something that unfortunately can not be fixed. If I could have lived my life with the interstim all over again I wouldn't have let anyone mess with my spine the way that I did.
WHAT was I thinking? I am 100% worse now than I was pre-implant and I know that there are so many other girls who's lives have changed for the worse and they have stopped posting because they have always been met with a cold response from others. I know for a fact that 2 of my friends, same dr, have had complications. One had to have her device removed and the other hasn't decided what she's going to do yet but it's been over 2 years and her's has never worked.
We walk into our uro's office, usually after being up all night peeing and he offers us this miracle cure and our minds shut down.....all's we hear is the miracle part. We don't hear about the bad things that could happen (are we even told? I was so geeked at the possibility of being 'normal' that I don't remember.)
For as many people that we have here defending the device (and YES, it is a fantastic device but enough research has NOT been done on it yet) there are just as many people who have had their lives completely ruined by it. The first one I remember was named Melanie. That was years ago and my heart blead for her. She felt that SHE failed, not the unit.....I've never felt that way....I've always known it was the unit that failed.
I am now left with the 24/7 back pain, back to peeing 20-30 times a day and 3 4inch scars on my back side. There isn't a day that goes by that I don't wonder what would my life had been like if I would have walked away from letting someone mess with my spine???? The only spine I am ever going to have.
I do believe that down the road this is going to be such a huge part of our treatment but there are so many bugs that still need to be worked out. I didn't mind being one of the originals. Of the girls here on the ICN I was the 3rd to have mine done. Well, once something went wrong, I minded alot but it's alittle too late now.
I've seen the new device. There will not be as much scaring. There won't be as much cutting involved. They are using different nerves to place the leads....so much has changed, and keeps changing but that pain in my back will remind me for the rest of my life that in one split second, my life was forever changed and if I can keep that from happening to just one person, my pain will not have been a waste.

[ICNJess]

(((((((((((((((((((Teri))))))))))))))))))))

I knew you had a hard time but this is the first time I was able to read your horrific tale. I am so sorry that you went through all of that. If I had gone through that I would have been angry as hell, too. There's no excuse for any of that. Poor treatment, all around. That really sucks. I am very fortunate, not to sound snotty, that the stim is much different today. Unfortunately it had to ruin some lives to get to where it is today.

Hugs and love,
Jess

[Teri]

Jess~I think that the unfortunate part is all of the people who have been pushed from here, the only place they had to go for help. I remember Melanie saying that, how she was the first one it didn't work for and to be completely honest, no one here knew HOW to comfort her. I know so many people who are in the need of revisions or who have been walking around with this device not working for better than a year because the surgery was so tramatic that they just don't want to have to go thru it again. (most of these women are of thin build)
And, naturally, the promises of the dr's with "well, we do it so different now." And, I know that for a fact they DO. Mine was ancient because the original surgery was in Oct '99 and I didn't have it removed until Oct 2003 but that doesn't mean that the damage won't happen.
I would give anything if I had the e-mails of the people who left (which I did have at one time but my computer crashed and burned and I lost all of them) to tell them that there is a safe place to come. I know that some aren't coming because lawyers are now involved.
I have to get my message straight.....it was my revision, with the new uro when that pain happened. It happened when he was taking out the old leads (which would have had to be taken out even if I didn't have the revision) He is the most wonderful, caring dr I've ever know and I love him with all my heart and wouldn't think of leaving him.......it's just that one of those things in the fine print of the agreement for surgery we are suppose to read ended up happening to me and I can't stress it enough.......find out EVERY stinkin' thing that could go wrong. Pray for the best but prepare incase the worse does happen. I don't want anyone to have to go thru the days that I go thru.
We all have a little voice inside of us and my little voice was telling me from the day my original one quit working to have the dang thing taken out and that voice kept getting louder and louder and I will regret for the rest of my life that I didn't listen to that little guy~

[lotsofgirls]

(((((Teri)))))

thank you so much for sharing this with all of us. You are 100% right, this is the place that people should be coming to for support. I wish there was a way to let those others know that we would love for them to come back.

Cath

[Mimi-in-Chicagoland]

I had shocking (when going through metal detectors and around security devices at the mall) and an increasing in voltage from my implant a few months after my permanent implant was installed. I had several reprogrammings and it didn't help. My pelvic floor muscles tightened up and my abdomen got really sore. I went through pelvic floor muscle therapy. We noticed during biofeedback that my tensions were higher with the implant on than with it off. Which is the opposite of what it is supposed to do...so we figured out that there was something wrong. I went to my new urologist and we tested the device with the rep---my voltage was twice as high as it should have been and my serial number had erased off the generator. They weren't sure what had happened. I had also lost weight, so they wanted to move the implant pack over on my hip. When they went in during the revision, they saw that the connector wires between the lead and the generator were corroded. I had lots of drainage after surgery and I have a blood clotting disorder I wasn't aware of--I'm sure that had a lot to do with the corrosion. They cleaned everything off and repositioned the same generator--which was fine. As for the shocking--they disabled the feature that allows the implant to be turned on or off by magnet--and I no longer am bothered by metal detectors or security tag detectors at the mall. I used to feel a large shock in my abdomen when I walked by Ann Taylor or other places that used those large tags. I have not set off a metal detector at the airport since--and I did all the time before. (which meant I had to show them my implant scar) Had the generator been defective, the FDA would have it now.

[Teri]

Wow Mimi~you sure went thru alot. I am so glad that things worked out for you

[Mimi-in-Chicagoland]

I am just glad they got it working again. It was SO nice not to have to worry about my bladder flaring up while I was in the hospital last fall with my two strokes. I did have ultrasounds with no problem--with my implant on...but they weren't near the implant. Cat scans didn't bother it either. Bear in mind that my magnet feature is off. If I had needed to turn it off, my urologist was in the same building. When they tested my implant before the revision it read that electronic devices had turned it on or off 172 times!!!! The rep's palm pilot turned the magnet feature off. I haven't needed to turn it off anyway. I probably wouldn't have had a problem if I wasn't so juicy.

[blondee]

Incision Site pain

I have experienced immense pain at the surgical site since the implant March 20. The first week or two I came to expect it but I am now over 4 weeks post op and still cannot sit, lay down flat or lean up against anything without horrific pain. I am begininng to wonder if the implant is too low??? Has anyone else experienced this? I am trying to wean off of 900mg neurotin but finding it hard at this time.

On a positive note it has decreased my frequency significantly, I even got to sit through a movie with only going once!! It has also helped with some of my daily pelvic pain (maybe the PFD?)
Will the pain eventually get better...cause this is H _ _ L!!!

jax

[peiti]

I have this sporadic shocking pain on my incision site. I had my implant on 10/31/2003. Sometimes after the workout or stretch, the pain would hit me. Though it was not very bad, still curious of what is happing in there.

[rachelm]

So far I've only had the old trial (a month ago) I'm scheduled for the stage 1 next week and then plan to have the stage 2 device implanted on 4/22. I also experienced my unit turning off all the time. It did get better as someone else said, when I changed the battery. After a few days of this my dr. gave me a new one and it was fine as it stayed on all the time. The other problem I had was something I have learned to prevent in the next stage 1 trial. I teach 1st graders and when I went back to school one of my kids hugged me and accidentally turned up the unit. I looked like a freak for a second and threw my arms up shaking and spilling all of my paper work. I was able to turn it down once I registered what had happened. This happened another time but this time I was the one that accidentally turned it up. After that I taped over the knob so it wouldn't happen again.

The hardest part of the procedure for me was when the nurse tried to take out the right wire. The left side came out on the first pull and while it hurt (very sharp pain) it went away in a few minutes kind of like pulling a tooth. She tried to pull the right wire 3 times and sent me screaming out loud. She stopped and had me wait for the dr. He tried and commented that he had never seen one stick so badly. He pulled up against my skin instead of straight out and was finally able to get it out and thankfully in one piece. He said he was concerned that it might break off in the process so he checked it and assured me it was still intact. What a relief. I hadn't realized that possibliity but now I do so I'm asking 100 questions as I get closer to my surgery. My rep commented that I asked things that 99% of patients don't even think of. My position is that I MUST know EVERYTHING involved in order to make an informed decision and ultimately have good results hopefully. I hope this information will help someone else who is considering this procedure. There are risks so we must be educated about them as well as the benefits.

[icnmgrjill]

Rachelm,

Could you share the questions you've been asking?? It sounds like a great list that other patients could use.

Jill