Moving Leads

[slatrat]

All,

I've had an interstim for two years. I have mild urge frequency issues but mostly a rip snorter case of vulvodynia. The implant has been a huge lifesaver on both of those fronts. The urge frequency is completely under control and the vulvodynia is also pretty much tamed - with a little help from a low daily dose of impramine.

However, my implant has moved twice. Last year it moved, nine months after it was implanted, when I started skate skiing again. I had to have it reimplanted - surgery required.

So, it's been a year since the second surgery. Last week, it moved again when I was pulling a heavy object out of the back seat of my Bug. I twisted when I was pulling and I think that popped it.

Note: I do yoga daily with all sorts of twists and bends. So, it's not as if I haven't been twisting....

So, my leads have moved wice. So my theories/questions are this:

1) Has anyone else had experiences with moving leads?

2) I wonder if my doctor is not doing a good job of implanting (I really like my doc - but one has to consider this).

3) Are the interstim leads poorly designed? I would love to have a conversation with someone at Medtronic about this. I want to get those leads anchored in...

4) It could be a combination of my doc and the leads...

So, what do people think? I'd appreciate any feedback that folks would care to offer.

Thanks,
Steph

[Dixiefireball]

i'm sorry i don't have the stim so idont know much about it but there is alot of gals here that does so hopefully one will be on shortly to help you out.
hope you find your answer and everything is okay.
sending you hugs and prayers
Rhonda

btw welcome to the icn family. (((((((((hugs)))))))))))

[ICNDonna]

I don't have interstim, but have heard of others having the leads move. Hopefully one of them will respond to you.

Warm hugs,
Donna

[Katrina]

So very sorry you have had theese problems. I think radstudent has had her devise move. From my own experience with my implant is that recovery from the surgery determines weather things move. Not that the doctor doesn't play a role.....have you looked on the net if you can contact Medtronic......my devise is made by Cyberonics....and I was able to contact them. They can't give medical advise....but should be able to answer your questions that are specific to your devise. Mine also came with a booklet...that explained possible problems and how to avoid them....did yours?

I hope you can get the help you need.

:angel: :grouphug:

I found a link you may want: http://www.medtronic.com/patients/bladder.html

[Teri]

Hi Steph!
If you have a rep, you could always talk to him and see what he/she thinks but in my 3 years with the implant (finally had it removed) the truth was hard to come by. I think that the reps work on a commission and the more they get a dr to do, the bigger their pay check. I know that the one I had was the most unethical person that was ever put on the face of this earth. I had some really horrific experiences during that 3 years but all the scars that are inside are caused from him.

wishing you all the luck in the world for finding an honest answer:blink:

[Mimi-in-Chicagoland]

Now the leads are supposed to be self anchoring. I opted to have mine sutured to my spine; this was before they were self anchoring. Having the lead sutured raises the success rate a lot. I've had mine for two years and my lead has not moved at all.

[DebbieB]

Hi Steph;

I also have my lead wire sutured to my spine and have never had any problems with it moving I have had my InterStim Implant for five years in April.
I did have a problem with the lead wire cracking in half at the center of the back the second year with the InterStim and had is removed and replaced with another lead wire, I later found out that the lead wire was a faulty lead wire..


Debbie

[littlebear]

Hi Steph, I'm so sorry to hear that you're having problems (again!) with your leads. I hope that you find some answers to your questions (isn't everyone here so helpful along those lines?) and that you are able to find some relief somehow very soon. Sending you lots of support and all my best wishes, little bear

[peiti]

Steph,

I am sorry that your lead moved. From the stories I heard here, some people did encounter this problem and I really would like to know what the Medtronic corp has anything to say about it.

My rep told me the lead can be self-anchored well one day after the surgery. She even showed me the newly-designed lead which has barbs on it. Supposedly, after the doctor injected the lead into our body, the barb will be slowly expanded (I don't know if this is the corroct word to describe it) and hook onto our tissue. It sounds pretty secure in there. However, in your case, the lead moved after 9 months. Just wonder, did your doctor or the rep say why?

:confused:

[slatrat]

All,

Thank you so much for your replies. I'm sorry I haven't replied sooner. I had the e-mail notification checked for replies to my post. But for some reason, I'm not receiving e-mail notification of replies. So, I just idly came by to check today and lo and behold there 8 responses!!! Wow!!!

So, here's the scoop on my anchoring - the first surgey I had two years, the leads were anchored by "tie downs" into the tissue (not spine). I popped those puppies a few weeks after surgery - I had pnuemonia and coughed/sneezed a little too hard and sproing! , they popped. However, the leads did stay in place until December when I started to ski. But that did it - they started floating all over the place.

Last year's surgery used the barbed leads. Which is a great theory. I would have hoped though they would have also been sutured into place. But, at the time, that was not the procedure. So it's just the barb holding it in place. Which, I just don't think is enough.

Part of the issue may be my ability to develop scar tissue - my body is not a great producer of scar tissue. So, I probably don't get as much scaring around the leads as other folks.

I definitely plan on following up with my rep. I've had two reps and I've liked both of them - although I've not had a great deal of interaction with them. So, this follow up should be interesting.

It would be nice if Medtronics could be open about all of this. I'm not interesting in suing. I just want to get my leads solidly anchored. I would be very willing to work with them on an industrial anchoring method. I want to be able to ski again!

Steph

[rachelm]

I hope your dr. is able to make this work for you again. I had the old trial done a month ago in hopes that it would get me through a flare and I wouldn't need the permanent one. I had great results with the trial but unfortunatley I've gone back to retaining and spasms after it came out so I'm getting the stage implant. My pre-op is on Mon. so I have written down this question for my dr. about the way he will anchor the wires. Thanks for discussing this with us so others can be more informed as they go into the procedure. I will pray that you have a successful revission and that you are able to be active again.

Rachel :pray: