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Posted 12/20/2010 2:48 PM (GMT 0)
I am once again asking for any information out there regarding NeuroStimulators that people have had problems with.  I currently have one implanted.  It has failed and am looking for others that may have had the same problem.  Currently this company is saying tough, live with the pain.  Ya, I know it is not right.  I am just seeking information to see if they have treated others the same way.  I am despretally asking for anyones help!!  mad
Posted 12/20/2010 7:31 PM (GMT 0)
Sorry, your posting was short, and more info could be used...did a Pain Management Doctor implant
the stim, or an Ortho Doctor, go back to that doctor and try to make them understand your having
a difficult time with your unit, sounds like someone should be helping you out, but are you going
to the correct people for answers..you need to talk to the surgeon that implanted your stim...
There are past posting on these implanted stim, maybe go back and read some of those postings,
but someone else will stop by with a better reply...
(((((((((((((((((((((((((((((((Mikeyd))))))))))))))))))))))))))))))))))))
Healing hugz and hopes your feeling better soon.
Posted 12/21/2010 1:49 AM (GMT 0)
Mikeyd I am sorry to hear that you are having such a problem with your unit. Is this your representative from the company that is telling you to just live with the pain? You did not give us much to go on here so I am just asking questions. I am going to assume you had a trial with the unit and it did you some good right? How long have you had the unit and when did it stop working? When you say failed are you telling us the unit does not work at all or does the unit not give you pain relief? The problem with the SCS units are they do not take the pain away, instead they create another sensation that is suppose to sort of override the pain signals. What is your drs thoughts on the unit? Is he willing to remove it or what. Sorry for so many questions but just did not have much to work off of. I would imagine if this particular unit is a true failed unit and not working just by typing the name of the unit in on the web should bring up lots of posts on a failed product. I find lots of info this way.

Hope to hear back from you.
Posted 12/24/2010 4:16 PM (GMT 0)
Thanks Straydog and Chartreux, sorry for not responding sooner.  Okay here is the story, I have had several surgeries since 2002 in regards to my back.  First was a disksectomy, which was suppose to take the pressure off the spine.  NOT, so the next was a fusion, (not the car), L4, L5 and S1.  Almost immediately after the surgery I told the surgeon that it felt like he left a golf ball in my back was very painful to sit, like there was a golf ball in there.  Well that is the scare tissue, OK!!  Then was put on several different medications to include narcodics.  So, now comes the pain management saying I need a neuro sitmulator, yes first was the test phase, ya it worked.  So they implanted it.  For the first four years worked great, no medication no narcodics.  Then came the day this year that it stopped working all together.  Representative said that the two leads shorted and it turned itself off, battery was fine.  Next visit, well maybe it is the battery they say.  Oh in the mean time I had switched PM's because of a paying issue with the last one.  This new guy is great, he was very hesitant about doing any further surgeries on me.  But with this device not working was not the answer, so they replace the battery.  Well once they plugged it in I had stimulation, it felt different, yes the rep says there is only one of the two leads working.  I said will that cover the pain that I need.  Oh why yes it will.  I am here to tell you no it does not.  And pulling the leads out and replacing them is too much of a risk for me, in that it could paralize me because they are for a better word fused in, and when pulling on them it could lead to major complacations and my doc just does not want me to go through that.  The company says oh no that will never happen. 

So what am I doing about it, well back on narcodics, how lovely.

Yes it was the company representative that told me to live with the pain.  Yes I had a trial period and it worked.  Yes the SCS only mask the pain, but it masked it enough to give me the relief that I needed.  Now because of the absence of the SCS working as designed, they belief that Spinal Stenosis that they belief was there prior but the SCS was masking the pain enough to not notice it as much.  With his help we have convinced this major medical facility to stop using this brand both in heart defibulators and stimulators, and that is what my doctor thinks of it.  He is a Navy man, trained at Walter Reed in DC.

The old Pain management doctor implanted the trial one and this current one. 

With help from my Senator, we have people in Washington DC, very concerned that the company is not offering me anything to help out.  I fact has turned me into collections for this last battery.  Oh did i tell you that after telling them with witnesses to save the battery for further testing, they have no idea where the old battery is.  Ya, DC really liked to hear that.  I am after they (Washington DC) returns from Christmas break, will be going to DC to tell my story before the health committee and the committee for the FDA.  My senator is very upset, as well as the person that investigated for the FDA, and was one of the invidiuals that approved this stimulator company. 

So that is my story, and what I need from all of you is very important, I need to hear from you if you are having trouble with you NeuroStimulators.  Such as the battery.  And the battery does not last for nine years as they will tell you.  I have documented evidence that the doc who implanted it told me the battery would last nine years.  Don't believe everything that you are told, ask questions, get things in writing from the company, it could mean the world to you later.

Thank you all and have a very Merry Christmas and your new year pain free.

Posted 12/24/2010 6:50 PM (GMT 0)
Hi Mikey,
Sorry to hear what you are going through. Lately, this has become my mission as well. I was told it would probably last 10 years. Well, now I have to charge the darn thing almost every time I want to use it. It feels like it is burning me & my skin gets so hot that anyone who puts their arm around my waist (with clothes on) can feel it. It has just become a huge irritation to me. They suggested a second surgery & thankfully I told them "no way!". It was really good for the first four-four and a half years. Now it is just a mess and gets worse every day. I still have all the disadvantages & now have very few of the advantages. Like you, they cannot remove my leads b/c, in my case, they are too close to another surgical site & the scar tissue would be totally out of control if they try to pull out the leads.

SCS's truly do have their place in medicine but it really irks me that people make them out to be these simple procedures without any risks that will last you forever & ever. The reality is they are GREAT for a while & then seem to get progressively worse. With each newer model there are some improvements, but they seem to be minuscule. If people are okay with getting a few years of good relief & then going back to the pain they were in before, unless they want to go through the misery & cost of another implant, then they should be able to do so. I just wish the reps would be more forthright about the downsides of these systems before people decide to go through surgery.

As you're no doubt already aware, you can always meet with the programmers & keep trying to find a combo that is a bit better for your pain, but I feel for you having gone through all this mess. Makes us question whether we really made the best decision getting it implanted in the first place. Probably so, but it's hard when something doesn't live up to the expectations the reps set forth.

Hope you find some relief soon!
frances
Posted 12/26/2010 5:10 AM (GMT 0)
Mikey I am so sorry to hear what you ar going through with the SCS. Being told to just live with the pain by a company representative is not the right answer in my book.I was under the impression the batteries would last 5-7 years at best. I do hope there is something that can be done for you. Good luck.
Posted 12/31/2010 9:48 PM (GMT 0)
Thank you for all the replies, as an update I have been informed that my Senators lead investigator in Washington DC has a meeting with the officials at the federal level in New York after the first of the year.  For those just coming in this is in regards to my problems with a Neuro Stimulator by a major manufacture, the battery in March of 2010 just stopped working and when I asked for help with the bills basically was told sorry.  And now only one of two leads are working, and then was told by the representive of the company, tough one will have to be enough.  So ya, I was upset and when I went to my Senator was expecting nothing.  Well that is not the case, I have currently a person working at the local level to get on the Manufacture about assisiting me with the bills, to include pain and suffering.  Plus as I stated at the Federal level.  But, here is where we need your help, if you have a Neuro Stimulator that has gone bad, I have heard from Frances_2008 already, but we NEED everyone with any kind of problem with there SCS to let me know on this forum.  I am not promissing any thing out of this, but as my father (RIP) always told me, Nothing ventured nothing gained!!  So if your reading this please reply, I will be in contact with you as things progress.  Thank you.  Oh and new developments with me are at the end of January going in for spinal tap, then possibly following up with another injection, which I told them would be a waste of time and money, because they inject this stuff into a vertabre that is not there.  But who am I.  Gerrrrr, then off for a mylogram/ct to see if anything has changed and to confirm the Spinal Stenosis.  Ya fun, fun.  Now you know why, I am making the first part of this a mission of mine.  If we have to go through this pain because of there malfunction then they should have to suffer as well, am I reaching for the stars, you bettcha!  Will I fall flat on my face, probably but at least I can say I tried. 

Mikeyd

Posted 12/31/2010 10:04 PM (GMT 0)
Mikey I hear ya, I have a pain pump that is on recall from Medtronics. Matter of fact there are 2 recalls on this model. I contacted Medtronic about this and was told that I could have the pump taken out and a new one put in, but my insurance company would be the one paying for it and of course me paying my out of pocket expenses. Now, I decided to go this route the pump must be turned over to Medtronic so it could be sent to their inspectors to see if my pump had either of the 2 problems stated in the recall. If I chose to do this Medtronic would be willing to give me a whopping $1,000 to help with my out of pocket expenses, I started laughing when the lady told me this. I said you are telling me if my pump is bad because your company screwed up it is up to me to have it replaced at my cost except for a $1,000 and she said yes that is correct. I told her that did not seem very fair since they make these things they should be responsible for the costs.

As it turned out my pump has been working fine and I have not had any problems with it. I always ask my nurse at each refill if the meds they pull out of the pump are the correct amount and so far so good.

I think what they are doing to you is rotten and just not right. Good luck.
Posted 12/31/2010 10:16 PM (GMT 0)
Straydog, yep that sounds like they did to me. But you see they are protected by a Federal US Supreme court decision that just because this happens to US taxpayers to bad. And then the courts want us to come up with a corrective meassure for this. NOT, that is what I am fighting against to get this changed, and with everyones imput the more the better. I am held responsible for repairs we do to customers cars for five years, in this state, so again why should they be any different. Thank you for your imput I will see that is part of my quest.

Mikeyd
Posted 1/1/2011 1:54 AM (GMT 0)
Mikey,
Unfortunately, all I can offer is moral support. My literature explicitly stated that there was no guarantee on how long the battery would last & that I (or my insurer) would be responsible for the cost of replacing it whether it lasted 20 years or 2 years, unless there was a "material defect". They have tested it for material defects & found that there are none. So it sucks, but ultimately I am outside of the very, very limited warranty that came with my unit. So all I can do is warn people about that these silly things don't seem to last as long as promised. On the upside, my PM has scaled way back on implanting these things b/c I'm by no means the only one whose unit is on the fritz after 5 years. He's pretty irritated as well since the doctors were assured that 10 years was the average.
I don't even run mine 24/7. Some of those who ran theirs nearly non-stop couldn't re-charge their battery after only 2 years. Sucks, but since the rep that came to my doc's office used the word "average" rather than "minimum", we're stuck paying for whatever replacements are required in almost every case (there have been a couple that actually were defective & BS did actually pay to replace the hardware in those cases -- though the surgical bills were still the patients' responsibility; however, I've heard rumors that their medical insurer was trying to subro it to BS -- not sure if that's true or not).

I sure hope that you find some measure of peace in this whole thing. What a stressful nightmare these things can turn out to be!

peace,
frances
Posted 1/11/2011 4:02 PM (GMT 0)
If you have been following I have asked my Senator to get involved in trying to help get the US Supreme court to reverise there decision, regarding Medtronic and there spinal cord stimulators.  I have just received word from DC that a formal congressional inquiry, has been filed as of yesterday.  Here is what I need your help with, anyone and I mean anyone with or that has had problems with any of the Medtronic Medical Devices to contact your US Senator and inform them of the problem that you have been having and be sure to tell them that the Senator from Wisconsin has this inquiry out there and to join in on this goal.  What are we hoping for, it is very simple, currently because of this decision no one can take any action against this company for there mistakes or wrong doings.  If the Senators in Washington DC find enough evidence, which I know there is alot out there, we are hoping for this decision to be reversed.  Is it a long shot, maybe, but you don't know unless you don't try.  I know there are thousands of people that have been hurt by this company and there product, now is the time the patients excersize our rights and get justice were justice is due.  Let's tell the FDA there is something wrong here, do your job!!  Toyota has made a huge mistake, and look what they have and currently are paying out.  Why is the FDA, and the US Supreme court protecting this company and there product.  Yep they are the largest for Medical Devices, but there are others out there that have replaced the Medtronic product with another and have had no problems in years. 

Wouldn't be nice to go without any pain for a year, not to mention years!!  I can't!  So let me hear from you, some of you have replied...Great!  Thats a start, your in pain for something that you didn't do, please, please lets stop the hurting the everyday pain.  I have had pain since 2007 because of this product, I have had enough and took action, luckly my Senator also believes that I have suffered long enough.  After reading the decision, his exact words, "this is bogus!"  What do you have to loose, more pain or the chance for your voice to be heard and maybe, just maybe will someday in the very near future will be pain free.  That is my wish, as I sit here today typing this at a level 10 pain.  I am on three different drugs that are not helping, plus being told by the Representive to just put up with the pain, we have drugs out there that will take your pain away.  My pain management doc said "if your on one narcodic with this stimulator in that is one to many".

So come on Chronic Pain suffers, what do you have to loose.  I hope the day I can be even at a level 8 pain will be forthcoming, and if it gets lower, Amen!!

Thank you for listening, and my prayer for all of you is that you have at least one day of being totally pain free.

Mikeyd 

Posted 1/12/2011 4:47 AM (GMT 0)
Mike,
I think it may be time to find a new PM. My unit isn't Medtronic, but it's not perfect either. That said, it really seems to be almost a myth that patients get these SCS implanted & then don't need any meds at all.

FDA studies tend to be limited to people with one condition in one part of their body. They don't pick candidates who have symptoms common to more severe pain such as nausea or dizziness, so the results are skewed.

If your PM isn't willing to prescribe pain meds once you have an SCS, imho, that's just plain crazy. In my experience talking with maybe 75-100 people who also have an SCS, unless their pain was low pre-op, they still need some meds (usually less) post-implant. If your doc doesn't realize that, I'd go shopping. I know it's not easy to find someone to take on a patient with an SCS, but you need a doc who will help you get the treatment(s) you need to function.

blessings,
frances
Posted 1/12/2011 2:59 PM (GMT 0)
Mikey, I want to thank you for all your wonderful information. I am so horribly saddened by your story, and what you've had to go through. The nerve of the company telling you to just "deal with it". I'd love to see some of those sissy's stand in our shoes and deal with what we deal with for a week and then see how easy it is for them to make casual, flippant comments like that!

Within the coming days I should be finding out (after Sunday) if I'll be approved to start the trial run to see if an SCS unit will work for me or not. I know a gal, who happens to live across the street from me, who has one also. Not sure how long she's had her's but she speaks very highly of it and what it's done for her; she's gotten back quite a bit of her life because of it.

After reading all the various comments in this thread it leads to so many questions that I'm not sure anyone can answer. We already know it doesn't work for everyone, but for those that do have it, is it more effective with concentrated pain (like one location of your body) or widespread? Is it the unit itself, or the implanting surgeon? I hear my PM doctor will do my trial surgery, but if I qualify for the real implant a different surgeon will be doing that. Also it sounds like there are a couple different units on the market.

I was so hopeful after speaking with my neighbor about how much of my life I might get back, but now I am terrified again. Is it really worth 2-4 years of reliefe to be right back where I started if mine has issues? Surgery every 5 years to replace potentially malfunction equipment isn't how I want to spend the rest of my life. I suppose if it does malfunction after a few years I can opt to have it removed and not replaced. You'd think with the way tech is always changing and improving that by now they'd have a fairly decent unit on the market with a good shelf life, but it doesn't sound like it.

I just double checked the info I was given last year on my potential SCS unit, and it's manufactured by Percision Plus ... does anyone have any experience with their units?
Posted 1/12/2011 10:13 PM (GMT 0)
Rhaevin,

Precision Plus is a stimulator system manufactured by Boston Scientific. I personally can't tell you anything about it, as my own unit is a Medtronics, but I have heard that it is a very good company. I think Frances has a Boston Scientific unit, so she might be able to give you a little more feedback. Other than that, I'd suggest visiting their website or talking with the company rep that usually works with your doctor. I know I've found my Medtronics rep to be very helpful both pre and post-implant, and believe me, I have asked him some bizarre questions about the possibility of my implant getting kicked by a horse, etc, etc.

Skeye
Posted 1/13/2011 3:33 PM (GMT 0)
Skeye,

Oddly that is close to one of my questions; I believe one of mine is "it won't get in the way of my saddle when I ride, will it?"
Posted 1/14/2011 12:09 AM (GMT 0)
Rhaevin,

I can't help you about the positioning of the battery in regards to the saddle, as my battery is actually in my chest & my leads are in my face, but that would certainly be something to ask your rep.

I handle horses & cows daily, and will for the rest of my life, so getting kicked/thrown into a wall, etc, etc is a very real possibility for me. Although after talking to my rep & my doc, I was satisfied that the stimulator would work with my lifestyle, and it has so far (although I've only had it in 6 mo). I still worry a little, but nothing has stopped me yet. I lift 80 lbs dogs just like before the surgery. In the time since I've had my implant, I've helped lift down cows & pull calves, and in general wouldn't even know that the battery is there. That's not to say that your implant won't be different (especially since mine is not your traditional SCS), but for me, the actual hardware isn't a limitation & of course the significant positive effect of the system on my pain is what really makes it worth it. Talk to your rep, do a trial, you'll know if the system is right for you or not!

hugs,
Skeye
Posted 1/14/2011 4:27 AM (GMT 0)
My unit is located just below where my low rise pants hit (in my butt). There are disadvantages & advantages to that location. They can also many times put the battery on top of the clavicle. I like wearing strapless dresses, so I vetoed that location, but I know other women who have it there & they're happy with it.

Some people get it implanted in their stomach, though from what I understand that is a more difficult placement. I know it was not an option for my body type.
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