Neurostimulation stimulater implant

Looking for anyone who can relate to my problem with my neuro unit. I had it installed march 5 -09 the pain with recovery was not too bad, but now my unit weens to have a mind of its own.  It has starrted to turn off and on by itself l have just about had enoght of it.  Almost wrecked friday in my truck when it stared up on me on the Freeway and I just about bought it.  Yes of course it started on a weekend so now I wait for Monday.  Has anyone else had this kind of related proglems with their stimulater?? I am really getting good results, but this I can/t put up with.  Any help?? thanks donny

Hi Donny,
Wish you luck, their are several things we can't do with the stimulator, and on is driving while it is turned on. You are just starting to find their limitations.

Hi Alives04:

I have had a stimulator (Medtronics) for about 10 years and I had a similar experience with mine. Watch the clock and see if the time in between when it turns itself on & off is consistent. When programming my device after a battery chance, the rep turned some kind of setting on where it turned mine off and on every 15 minutes. I figured out on my own that it was cycling every 15 minutes, but when I called Medtronics, nobody knew what I was talking about - it took them a couple of hours to find someone who even knew that this setting existed!

The Medtronics rep had to be the one to turn the setting off, I could not do it from my "remote" as I call it.

If the timing is random, then I would assume that it is a loose wire, which would require further surgery to fix.

Please let us know how you make out.

Lorie

Deb,
I had the same issue as you with pain as the site of the battery/stim pack. Mine was implanted 3.5 years ago & 6 mos. ago I had RF Nerve Ablation. It took care of most all of the pain at the pack site. Maybe it's something worth looking into?

My leads are in my neck, but I also have issues not being able to control my arms when the stim is turned up. I have been known to sometimes throw things across the room involuntarily. The funniest (& saddest) was when my butt was so sore, that I was sitting on my bed to eat dinner. My computer desk was about 3-4 feet to the side of my bed. My arms jerked & hurled the plate of spaghetti onto my keyboard. Needless to say, my keyboard needed to be replaced. No amount of care of cleaning could get it back up & working properly. :(

It's taken a bit, but we finally got it reprogrammed enough times to allow me to turn it on sometimes without problems. I now turn it off to eat dinner or if I am carrying a breakable (I've also broken several jars of sauce, pickles, maraschino cherries, etc.). It definitely does take a lot of getting used to; hopefully things will get easier on you as time goes on & perhaps you will finally get a rep who can get you a good set-up.

Anyways, take care,
Frances

In regards to numbness, I had a lot of it to.  My dr. gave me a scrip for a pain patch that not all ins. cover, but it really worked well.  It is Lidocaine-5% , it is put out by Lidoderm.  Excellent for pain and numbness.  The patch is about 5 x 7 and after awhile I cut them in 3 pieces and used them 1 at a time.  Got 3 for 1 so to say.  They are very high priced though.  My hmo humana under my disability would not cover then second time around.  One thousand bucks for 90 of them.   They are still under patient, so no one else has them. My dr. knicked a nerve and gave me a free dragging left foot, so I can understand numbness.  It is no good.  Neither is burning your disks together, can/t see my feet anymore and other items of interest.  I only wish I had found this group before I had surgery so not going in completly blind.  Later people.  Back on pills again, my little black box is broken for now....d

Thanks alot for the thoughts, I wish I had found this site a long time ago. I knew nothing about the neuro system but what the drs. told me and I was at and holding better than a 10 on the pain scale and had been holding it for the last 6 to 7 years. All of my spine surgerys have been okay, but one thing always led to another- my s1,2 are both bone on bone and it is the worst, my t678 are herniated and this jobber has been good until like 3 days ago. It is a big bubble burster. Pain again and lots of it. I can/t lift more than 20 lbs. and I am an a/c contractor with no employees, so that job is done after 33 years. Trying to make it of ss disability is not easy. But between patches and Tramadol I am existing. Thanks .Time for a pill and lights out. dl

Aliveso4, Greetings. I had a SCS (Boston Scientific) implanted the first week of June. I am now 2 months out and finally I am at the point where I think it was worth it. My problem was not with the unit, but the incompetence of the dr. After fighting off an infection that the dr. refused to treat and going back to work to early (the Dr. told me to). I found the implant site just was not healing and I could not tell if the unit was reallly going to work. I have my implant in my back as I already have trouble sitting and driving and felt the implant in my butt would make it worse. I drive with mine on all the time as I run mine 24 hours a day. I am slowly getting used to turning the unit up higher and not having as much problem with the wobbly legs. I use a cane and that helps incase the leg goes out.

I realize that when my surgeon told me that this was the best it was going to get might be true. I certainly did not want to belive it but it has been 11 years and it has not gotten better. Now little things that bring relief even for short times are worth every second.

Sara,

I'm being evaluated for a nerve stimulator next week by a neurosurgeon experienced in treating facial pain, although my pain isn't in the same region as yours. I'm being sent to him by my neurologist. I'm not sure if this device is the same as the SCS or not, but it is similar. In my case, the leads would probably be implanted on the trigeminal nerve in my face. I'm not sure if the actual stimulator unit is implanted or external (not sure where they put it if the leads are in the face...). I'll learn more at my appointment next week. My pain is in & behind my eye. I think there is a good chance that I won't be a candidate, just because of the location of my pain, but it's worth a try!

Skeye

margok, I have a Medtronic RestoreUltra SCS and I'm one of their biggest fans. I'm should be the goofey infomercial lady that talks about how it's given me back my life and I don't know how I could ever possibly go back to living the way I was before the implant.

My IPG is implanted in my lower back, just above my waist, and I rarely even notice it's there. The only thing that really bothers me about having it there is that I have trouble finding it when I need to charge. It's an odd way to twist in order to feel around for it, especially considering twisting isn't something I ought to be doing to begin with. Also, I sleep on my back and the only time I really feel the IPG is if I'm sliding around trying to get comfortable and my skin gets caught/stretched in the process.

I am not medication-free with my stimulator. I use a long-acting medication to bring my pain levels down about 2 notches on the pain scale, which is just enough to let the stimulator take over and control the rest of my pain. I also have breakthrough meds that I can take, if I'm being stupid (also known as doing way too much) and set off a pain flare. I'm stupid quite frequently, but I think the fact that I can be that stupid and live to tell the tale is a testimonial to my SCS. ;)

As far as which stimulator is better or best, I think currently the Medtronic RestoreUltra and the ANS Eon Mini are pretty comparable to each other. There's no significant size difference between any of the implants anymore and as far as the parameters for delivering the stimulation, the RestoreUltra and the Eon Mini have pretty much the same ranges in every area. The RestoreUltra's battery is FDA approved to last 9 years and the Eon mini is approved for 10 years, which is the longest approval on the market currently. Medtronic and ANS both have a wide array of leads (more than 10 for each company) for the doctors to choose from and both companies offer a tripolar paddle lead now, which is important for people who are hoping for coverage of low back, abdominal, or gynecological pain, because the stimulation needs to be driven deeper into the spinal cord in a way only tripolar stimulation can achieve. And finally, ANS and Medtronic both offer mobile charging, so nobody has to sit tied to a plug to recharge anymore.

In my opinion, Boston Scientific is way behind Medtronic and ANS these days. They haven't made any significant improvements to their implant since it was released in 2004, which astounds me at the rate medical technology is advancing these days. They also have a very limited number of leads to choose from - only 2 types of percutaneous leads and only one paddle leads; they don't have a tripolar lead. They do offer mobile charging and they do have the smallest charger, but I think there's a sacrifice with their charger in that it doesn't provide as much information as Medtronic and ANS to help you recharge most efficiently. Also, their battery is only approved for 5 years, which is the shortest on the market currently.

Now, that's not to say that Boston Scientific's implant doesn't work - I know several people (in my 3-dimensional life) that are perfectly happy with their Boston Scientific stimulators. I also know people who have been unhappy with all 3 brands, for a variety of reasons. (I attend a face to face support group for SCS folks, which is why I know so many.. LOL) For me personally, I couldn't bring myself to choose the Precision Plus implant because I want to know that the company behind my stimulator is constantly researching, making improvements, giving me more options than I could possibly need and supplying me with the most advanced technology available.

tysmyboo, there's a Facebook group called "Nerve Stimulation for Chronic Pain" that has an unusually high concentration of people with occipital nerve stimulators. If you're on FB or willing to sign up, I've found that group to be quite friendly and willing to answer questions, so you might gain some useful insight from them.

Also, here's one article on ONSTIM which was a study funded by Medtronic to collect data on occipital nerve stimulation -

wwwp.medtronic.com/Newsroom/NewsReleaseDetails.do?itemId=1214482108297〈=en_US

Post Edited (BionicWoman) : 8/15/2009 9:30:36 AM (GMT-6)

 Shirley:  :Pllease read this before you comitt.  I am a reciever of one on Mar. 15 2009,,,,,my unit burned out 6 months and 6 days later,,,,,,,,,I recieved a new battery 31 days ago today and it is already starting to corrupt........./wait unitl they find out what is oing on wiwth the fking batterys.....I am now again hurting with a look at another surgery to find out what is up with what...  I do not have an ignorant dr. or provider,,,,,but they cannot understand what?????????????????  I donnot know what???????????  Wait........Or askkkkk  about the batteries or get an iron clad garrentee............You will not get that.......I did not.......AAAAAAAAAAAny way,,,,,,,my major question from this group , and I have posted here before, I am not a fluke or a never have been here before.   I need to know if anyone  out here in the heairing range of this forum has or knows of a Lawyer who would be willing to handle a malpractice suit against St. Jude Med. supple of  Texas.  Torte reform has stopped any and all sorts of suits against drs. and others in Texas.   Any help would be loved.   I had a second battery replace on  Sept 15, 2009 and it is already burning out..........There is sonething wrong wwith these batteries or with the unit.......I can get no answwers from anyone or a call from anyone now......Here I go again...........Someone out there give me some help..????? 
Thanks to all..again.........dlt--------aliveso4

Y:ou can really tell when you have been on drugs to long, my case I cannot remember anything anymore. After reading the forum tonight I remembered what kind of unit I have in my back,. It is an Eon. There is somet;hing wrong with the batteries. My drug reps. now do not call me with advise, they are getting tired of listening to me *****. What else can I do? I am not a dr. Just a used up old work horse that has been rode hard for too long. Just need to find me a good lawyer who will take my case for whatever. New to the net, will try that first, dont know..... dlt

Bionicwoman--------you certainly  are.  Thanks so much for the lead.  Gonna be a goood day yet.  thanks  dlt