? for veteran Interstimers

[ICNJess]

Has anyone ever gotten their unit re-implanted? Like, have the surgeon go in and put it further in?

[DebbieB]

Hi Jess,

Well I had to have my lead wire replaced in my second year with the InterStim as it was a faulty lead wire and it crack in half at the center of my spine..but not the pacemaker..

Jess are you having problems with your pacemaker sticking out??

As it will be my sixth year with the InterStim in April, I can't belive it is that long either but I notice it is out a bit but you can't notice it through my pants..

Debbie

[ICNJess]

Debbie,

I am so glad you replied. You are definitely a veteran, girl! :)

Well the problem is, it sticks out REALLY far. Like it changes position and sticks really far out of my skin and hurts like he**. I was showing my uro and at first he kind of dismissed the thought, then when I showed him (my mom was present also) well they both freaked out. So now I go back in, in a month, to be re-evaluated. The other problem is, is that despite some reprogrammings, it's not working as well as it used to. So we are tip-toeing around taking it completely out, or just digging it further in and keep tweaking it.

I am leaning more towards digging it in further and keep tweaking it...what a mess.

Help!

[codyryonwoodward]

Jess have problems with mine sticking way out now to. I lost a bunch of weight since I had my interstim put in back in 2001. I dont know how far it sticks out, but it is totally noticeable now. When I wear jeans they rub on it. Mine is right around my waist line. I also am having problems with mine. I had a car accident in 2003 and the dr thinks that shifted my lead some. But before that mine was not working like it did when I first got it. I have tried reprogramming and stuff and it did not work on it. So I to am left with either removing, putting another in on the other side or fixing the lead. I am thinking I just want it removed. I am not at all happy with mine. I was at first but not now.

[DebbieB]

Hi Jess,

When you had the pacemaker put in was is not placed in a pocket of skin ??
My is in a pocket of skin that was taken from inside of my body...
So it can not fall out or move I can feel it but only if I place my hand over it but it does not stick out enough to hit anything..

So I guess I would ask your doctor that question??
Also you could very well need an adjustment or some time a wire is loose off of the pacemaker unit is self...

If I had to do it all over again I would not hesitate at doing so as of the wonderful results I had over the past five years..

I hope everything goes well with what you decide to do Jess..

Hugs, Debbie

[ICNJess]

Well I have gone through umpteen reprogrammings, but I'll probably give it some more tries. I am hesitant about taking it out, as the leads will have to stay in. That frankly scares me. I can't even lay on my back without having pain. I can't lay on my side. I can barely sit comfortably anymore. I guess we'll see how the surgery goes, and take it from there.

I did have success from it, and it is a great device for those who it keeps working for. I am not knocking it at all, I am just disappointed I guess.

[yvette]

Jess: Maybe you're right and you do need to have it replanted deeper into the *pocket*. Start asking questions, see what the ramifications are: will it change your stimulation? will it change your success?

I was offered that chance at revision. One for cosmetic reasons and they did ask me if it bothered me, if it gave me discomfort. I think they just didn't see the point of me having to exchange relief from one symptom and then introduce pain from surgery.

I say look at it this way...at some point down the line they HAVE to open you back up to change the batteries....I'd say get everything done all at once. The unit may even work BETTER after its been tweaked a bit.

Good luck,
hugs,
y. :)

[ICNJess]

Yvette,

Yeah, I suppose you are right. I guess for now I'll let them bury it deeper, and keep having it tweaked. I just really hate to have it removed, so I think this step will be wise.

Thanks!

Hugs,
Jess

[ktrncl]

I have mine implanted wednesday the 16 of FEB. you guys scare me now about its going to stick out or something.

[ICNJess]

Ktrncl,

Mine sticks out because I have lost quite a bit of weight since the implant. I think if you maintain your implant weight, you should be okay.

[codyryonwoodward]

I agree with Jess I lost alot of weight since having my interstim put in. That is why mine sticks out now to. Before it did not stick out.

[Dusty]

Jess,
I am interested in knowing why do the leads have to stay in if you have
your device out.
I know in some cases it is because they can't get the leads.
In other cases it is to dangerous for future probs to try for the leads.
I know in some cases the leads have broke off.
I have heard in some cases where they don't take the leads out and then
they end up going back later for them.
I get asked many questions about these leads and all doctors have different
opinions. What was the reasoning for leaving your leads in?
Mine was so I would not have more spinal damage..but they were able to get
mine by making a incision off to one side and pulling them out there..the surgeon said that would work the best and be the best invasive in the nerve
area once again.
Dusty

[ICNJess]

Hi Dusty,

My surgeon/uro told me that the reason they have to stay in (and this is just major speculation right now) is that because by now, they are probably encased in scar tissue. He said he would take out as much lead as possible, but he didn't think that he would be able to take much out. I am going to ask him to take a look when he puts it in deeper if he can. To my knowledge I have only one lead. During my trial, my right one was very painful...I think he took that one out, and I just go off of my left one.

Anyway, you sound like you have been through a lot with your InterStim. I am so sorry. :( At least they were able to get your leads out though. I will have to ask about that, if they decide a few months down the road to take the stim out.

Hugs,
Jess

[Dusty]

I was curious because I have heard where leads stayed in and leads came out.
I have gone through alot with interstim. I don't feel sorry for myself though,
as I think I can always find someone worse off than me in life, and we all
face a battle of somekind in life. We all go through things in life that are painful to us in all areas of life. I have always looked at life this way and all my friends know me for this statement.."What I am going through in life is
no more intense or less intense than anyone else. If it is something that is making life difficult and painful for you no matter what it is...then it is no more important or less important than what I go through. In otherwards everyone is of value and their problem is just as important.
Have a wonderful day.
Dusty

[ICNJess]

Dusty,

That is a great attitude to have. Things could always be a lot worse, right? Sometimes we lose sight of that--I know I do sometimes. But you are absolutely right. :)

Hugs,
Jess

[ICNJess]

Dusty,

That is so humbling. Your story brought tears to my eyes. You husband sounded very courageous and also sounded to have a great deal of integrity and strength. I am so sorry you went through the awful battle alone. Please stay on the boards...you have so much advice to give, since you have been through so much. YOU NEED TO BE HEARD!!

Big hugs,
Jess