Nerve damage from Stim?

[alianne]

Hi -
I had two stims put in one on either side of my spine 2 months ago. They have been helping a little with my IC .. BUT in the last couple weeks I have had problems with my legs ... it doesn't matter if the stims are on or off I have increasing numbness, like my feet and legs are waking up from a spinal or something - very heavy, tingly, hand to walk etc. It is worse sometimes. I have had some of this will my hands and arms too ... so I don't know if this is something else or from the work on my nerves ... I am waiting to hear if I can get in to see a nurologist for this. I am scarred because pain is one thing that is hard, but I know how to deal with it better now .. but loosing strength and function of my limbs is really hard for me as I am a farmer and I love being as active as I can.

any advise or ideas would be great .. I know God will get me through this.

ali

[DebbieB]

ali, I would call your doctor and have this check out !

I have had numbness in my leg and toes , I went for an adjustment and he move it off that area ..

So don't let it go , call him !!

Hugs, Debbie

[humpieumpumkin]

My leg falls alsleep once in a while too. It doesn't bother me though. I think like Deb said, a reprogram is in order! Hopefully that will help. I'm glad the stim is helping you a little!

Erika

[ICNJess]

My nerve damage started with my stimulator moving out of it's pocket and roaming freely. I think it moved the leads, it had to have since they are anchored to your nerves and then when the thing it's attached to moves, well common sense would say the leads move, too, and affect the nerves!

Anyway, with me it started out as a pins and needles feeling in my leg with the stimulator turned on. So I turned it off in November '04. In February '05 my doctor finally agreed to see me and agreed that the ipg had moved. In June '05 I had it reimplanted and it popped back out of it's pocket immediately after the reimplant.

I finally had it removed in July '06 (I was pregnant from July '05-March '06 otherwise I would've done it sooner) and I now have permanent nerve damage.

The place where the stim was and the pocket hurt every day, so does my left leg and foot. I go numb in my toes. My knee cap always hurts and so does my tailbone.

I take Lyrica for the nerve pain and it has greatly helped.

I guess my advice in this long story is that if the reprogrammings do not help, keep on your doctors about this because, for the most part, they do not like to admit fault or that their surgeries are faulty. Mine and I haven't spoken since I had my implant removed and I had to get my pain management doctor to do testing to see that the nerve is in fact damaged. So don't give up but I really do hope that your reprogrammings work!

[alianne]

I did go to my doctor she said she didn't think it was the stim since it does not chaneg at all when the devises are turned off .. the company who makes the stim said that if it is the stim it is probably something to do with the surgery going wrong or a lead too close to a nerve or something - they also said that when the boxes are turned off it would clear up if it was caused by the electrical impulses. I have had my box off for 24 hours now second time I turned it off and there is no difference - I feel like it is still on - in that I feel tingling and heaviness in my legs. It is a lot more than a leg being asleep - it is very hard for me to walk because my legs are so heavy and floppy - like they have no strength. It's weird.

[alianne]

Thanks - and I am so sorry you had to go through all of that .. how did you know that the leads had moved? In one of my boxes it sticks out very far - like it feels like it is sticking out sideways a little - I can't find the bottom corner of it and the top one gets in the way constantly of what I am doing (not that i mind unless I bump hard against it or something) well they are working on getting me into see a nurologist so I guess he would be able to tell me if it is from the boxes .. my other doctor said it sounds a lot like MS which would be crazy since I already have so many diseases!

ali

My nerve damage started with my stimulator moving out of it's pocket and roaming freely. I think it moved the leads, it had to have since they are anchored to your nerves and then when the thing it's attached to moves, well common sense would say the leads move, too, and affect the nerves!

Anyway, with me it started out as a pins and needles feeling in my leg with the stimulator turned on. So I turned it off in November '04. In February '05 my doctor finally agreed to see me and agreed that the ipg had moved. In June '05 I had it reimplanted and it popped back out of it's pocket immediately after the reimplant.

I finally had it removed in July '06 (I was pregnant from July '05-March '06 otherwise I would've done it sooner) and I now have permanent nerve damage.

The place where the stim was and the pocket hurt every day, so does my left leg and foot. I go numb in my toes. My knee cap always hurts and so does my tailbone.

I take Lyrica for the nerve pain and it has greatly helped.

I guess my advice in this long story is that if the reprogrammings do not help, keep on your doctors about this because, for the most part, they do not like to admit fault or that their surgeries are faulty. Mine and I haven't spoken since I had my implant removed and I had to get my pain management doctor to do testing to see that the nerve is in fact damaged. So don't give up but I really do hope that your reprogrammings work!

[ICNJess]

Your box is sticking out? That's what mine did. You could visibly see it and feel it. Plus you know where the incision is where the box was put in? Mine was like 4-5 inches up from that incision, around my waistline. You could touch it, poke it, see it sticking out. It was sick!

I just assumed the leads moved--the doctor refused to do any testing. He didn't even believe me when I called the day after the reimplanting to tell him that it had moved. When I went in for my follow up he was blown away. He said he'd never seen this happen before.

He then devised a plan of putting the ipg on my right side and then tunneling the leads through my back side from the left where they were, to the right where the ipg would be. I told him I didn't like that idea and he said he'd check into it further to see if it could be done! I was like there is NO way I am having that done. He then called and said that Medtronics would not approve that surgery. I guess even they have their limit!

Sooo anyway, I would just ask for him to physically examine the pocket AND get an x-ray to see if your box has in fact moved.

Why do they think MS? I don't understand the correlation I would first ask for an x-ray before you go through the MS testing, unless of course you have other symptoms that are MS-like. But as far as feeling something poking out of your skin and what not, that's what happened with me and it was in fact the box sticking out.

[alianne]

yah - I might have them check it although my surgeon (who was not the same surgeon I have always had for these because my regular one had a baby teh week in between trial and implant) won't see me because she doesn't think the leg symptoms coupld possibly be the box since they don't go away when I turn them off. They said MS because I have had weakness and the tingling is a symptom I guess of it - also my arms are similar. However to test for MS I would have to have the boxes taken out because I would need an MRI. So, I am trying to find someone who will see my about this since my urologist won't (I know my regular one would - but since she is on baby leave ...) my box is in the same area it just seems to have turned on its side maybe .. so I donno.

we'll see! what a crazy ride this one is!

[vm]

One thing I would do, just in case, is put some of this in writing. If the surgeon doesn't want to see you b/c she thinks it's unrelated to the stim ---- then send her a letter, a polite letter, but one that describes your symptoms and asks her to investigate to see if it is related to the stim.

That way you have in writing that you've let her know your concerns, you've asked her to see if there is a connection, and if she still won't see you it would then be proof she wouldn't try to determine if there was, in fact, a connection or not.

Sometimes having a nice paper trail motivates others to get it in gear.

[tigger_gal]

your remote can tell you that the stim is off and it is not. Mine did that, but, I fell and damaged mine. I had it replaced in may 07. The stim leads are not supposed to be attached to the nerve, but along side for stimulation. Jess is right, if the device moves it is common since that the leads will move. I would make an appt with the uro that implanted it and go in with a long list of questions. This is your body and you know when it don't feel right. If after a re program it dose not help. put it in writing that you want it removed.
good luck

[ICNJess]

I strongly echo Kim's words...get it ALL in writing. I wish I had.

My numbness and pain is still there, even without the stimulation and I do not have MS. My leg has given out on me without warning before. I guess I would just keep getting on the surgeons--especially with Kim's suggestion--and take it from there. At least then you will know if it's the InterStim or not and you can take it from there.

[alianne]

wow - thanks everyone, I think I will try and get in for a change in programing or something ... I don't know. Also, what about arms? Mine are also loosing strength and going numb - sometimes I can't even type well. Are arms too high to be affected? Should I leave the box turned off while I figure thsi out ... do any of you think having it on if it is too close to teh nurve could cause damage?

[tigger_gal]

it sounds like the doctor may have hit a nerve, it might be a good idea to call a neurologist.