SCS shutting off

In the last hour my spinal cord stimulator has shut off on me completely and turned back on at a higher intensity 3 times. Two of those times I lost my balance and ended up on the floor. It was gracefull! Thank goodness I am 115 pounds now verses 250, you dont hit as hard. The kids in the classroom just thought it was hillarious, however I think I may have said a bad word,lol. I think I just told someone the other day I hadnt fallen in over a year,lol. I can feel an increase in pulse width (thudding intensity) as it is happening so the third time I was able to brace myself as it was shutting down.

Anyone with experience with SCS and particullarly SCS malfunction, do you have any ideas? Dont worry, I do have a call into my neurosurgeon and SCS Boston Scientific rep so that is covered! It usually takes them a day or so to get back to me. My body is so accustomed to the SCS that I have a hard time walking without it so I dont want to shut it off completely. Never a dull momment!

Oh my goodness!!!! What a scary situation. I can't believe your rep takes a day or two to return calls either. I have St Jude's and they return calls virtually immediately!

I have no idea what could be happening, but I so hope it can be fixed ASAP! I know I could not handle loosing mine now even after just a few short months of relief.

Please let us know when you are feeling better. I know this must be a really scary thing to face with the shocks!

Hi shell, I wish I had something to pull off of from my years of fixing computer boards and other electronics, but I don't. Does it have a remote control? I know some remote controlled devices (my bed being one of them) can malfunction if the remote batteries are going dead. I'm sure you probably already checked that though if there is one. I hope it's a simple fix. Take care, and please be careful.

Texted Regional Supervisor at 5:15 and my direct rep messaged me back at 5:18,lol. I hate to be a pain in the backside but thats their job. Just waiting for a time for tomorrow. Hopefully it was just a weird glitch.

So I got no call back, I am beyond irritated. The last thing I heard was that they were going to see who could meet with me yesterday as soon as possible. I shut off a few times yesterday as well, something is not right. My PM dr said at this point it would be best to only turn my unit on when I am not up and about so I dont fall again. My legs are so heavy and like jelly. Still hoping its a glitch in the programming.

Oh Shell,wow, just what you do not need. Especially when things were going good. I hope whatever it is can be taken care of with the least inconvenience to you. I am in a bit of a panic mode right now too. My battery is dying in my pump. I met the surgeon this afternoon. I am having a new pump put in on the 6th. But, because its a Codman, not a Medtronics he cannot transfer the meds from one pump to the other. They operate totally different and the Codman can not be programmed like a Medtronics. The nurse at my PM drs office says my PM dr will give me meds to help keep the withdrawals down, I hope, I am nervous as a cat about this.I will have meds put in the new pump on Friday, 2 days after surgery.

Please let us know what you find out about your unit....Susie

Susie, sorry to hear that you need your pump replaced. Seems like its always something,lol. I am not making any plans till I know anything for sure. She just said the fact that I lose balance and have now fallen twice makes it a big issue. They need to cover their end I guess.

If it needs to be done I am wondering if I could get the pump trial before hand. If we like how the pump works I could kill two birds with one stone, so to speak. Replace battery and install pump at the same time,lol. The dr and I have briefly talked about the pump but havent come to any descions. I dont want to rush anything but I really hate to always be recovering from something.

NJ, sorry to hear that your entire unit needed to be replaced. That must have been tough. The person today did tell me that if this does need to be done its pretty straight forward and nothing is done with the wires, just the lower insiscion gets opened.

As of now I will stay calm and think happy thoughts,lol.

Thanks everyone!

I don't have an SCS...and before this post I didn't even know what that meant but I wanted to say sorry about the falls. I know falls can really suck, especially in public. I don't know you, but I'm assuming you work with kids(?) and from my experience falling in front of them is even worse.

Like you said, thankfully you were 115. Falls can really take a number on the joints...and skin depending on what you fall on.

The rep downloaded all my data today and he said it would be about a week to get a report back from the main engineer. He doesnt feel that any wires are loose according to my reprogramming and coverage.

So we either have a battery going wacky or some sort of programming glitch/ interferance. He said something about complex programming limitations. I have no complex programming so this isnt likely. But we made some changes and deleted a program I dont use to cut down on memory usage just incase. Over the next few days I will just keep a list of times I shut off and what program I am set on. That is, if it happens, hopefully it will not happen at all.

DangerDash, I am an occupational therapist in the school system. I work with kids 3-21. I have multiple disabilty kids, autistic support, life skills and learning support kids. Thankfully the classrooms I am typically in are small with not to many kids. Now if it was with my high school kids that would have been bad. I know what you are saying about falls. A few years ago I gave myself a tiny hairline hip fx when I fell. Thankfully it was ever so tiny and it only required some restrictions and the use of a walker for about 2 months.

Bill, I did ask my rep about this possibility and there answer was no it cant happen. I have shut off in many classrooms, my office, kitchen, bathroom, so it hasnt been isolated to one "place". I asked him about the possibility of wireless internet, phone, bluetooth, smartboards as well and he said no. I know that there is a warning about metal detectors and security screening devices possibly turning units on/off, giving an unpleasant jolt according to my card. So interference of some sorts is possible according to the literature.

My rep said he has only had this happen to one other person, almost exactly like I am describing and that was a complex programming glitch. Unfortunetely this morning, after the programming changes yesterday, I still shut off a few times today. My rep was pretty dissapointed to hear this but I wanted to make sure he could add the info to the report he was submitting. Of course I was more dissapointed than him, that would have been a simple fix, now we running out of easy fixes. Why cant I do anything simple?

Shell-

I have the same problem. Never an easy solution. I hope they can fix it with programming.

Take care,
Bill

Shell,
I'm sorry it has taken me a while to reply. I'm new to the site and I have a hard time navigating around. Lol. When my machine was messing up it would go up in intensity to where I couldn't stand it and then it seemed like I would jump because it was so uncomfortable. When I moved or jumped quickly it went to nothing. Then I would start moving again and it would go back up like that again. My old unit that I have from 2006 has a really large horseshoe shaped magnet that I use to turn it off and on as far as the power. When that happened I powered off and powered back on and it would fix it. I have had problems off and on with it but it has never been anything major. I did stretch my arms over my head one time and it kinda moved the paddle a little. With the old units that is something you are not suppose to do. They are not as stable as the new ones are. I hope you get it fixed and please let me know what the outcome is.
Thanks, Janet

I have the new Medtronics with the new battery that can sense your position, like a cell phone or IPad.

Sorry they don't have any answers yet. The positional zaps are bad enough, but your problem could be dangerous for you.

Take care,
Bill