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CRPS...... Spinal Cord Stimulator..... need to find people with this devise

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Posted 12/17/2013 6:05 AM (GMT 0)
Hi all.
My name is Amanda. I have Complex Regional Pain Syndrome. 4 weeks ago I had a Boston Scientific Precise Spinal Cord Stimulator fitted.
I seem to be having a few issues at the moment, I was told to switch off the stimulator to go through theft detectors, which I have done BUT I still feel like I am being electrocuted from the inside (massive jolt).... Just wondering if anyone else has had or having the same problem... Have now been forced to shop at places that do not have theft detectors, which has limited my shopping to nearly zero, some shops will help by allowing me to use an emergency exit door were they are not alarmed, but most shops won't even entertain the idea of trying to help me, even when I show them my patient ID card, NOT SURE IF THIS ISN'T DISABILITY DISCRIMINATION.
Would appreciate any advise....
PLEASE
Posted 12/17/2013 6:44 AM (GMT 0)
Hi Amanda and Welcome to Healing Well Chronic Pain Forum. You have presented a problem that I have not heard of before. Admittedly I do not have a spinal. stimulator but your situation does remind me of a problem I used to have when using my TEN'S unit. When working in the hospital when ever an alarm went off on one of the heart telemetry patients and if I was in the vicinity of them and wearing my TENS unit it would give me a heck of a jolting shock! As would the old fashion bag cell phones. So I can definitely see how these dsectors might cause the same problem with an implanted spinal stimulator.

There are several people on this forum with spinal stimulators I am sure they will be along shortly and be able to shed some light on your problem and maybe even be able to provide with some advice and guidance on what you can do about this. Before you got the stimulator did they mention anything about these type of problems by having this stimulator? If not then I think there is a problem there too! I was offered the opportunity of getting a spinal stimulator and I declined because of the problems I had with using the TENS unit now after hearing of your experience with the stimulator, I am glad I did!!

again I welcome you to the forum, I do hope you stay around and become an active member of our CP family.

White Beard
Posted 12/18/2013 1:07 AM (GMT 0)
Hi Amanda,

I have a medtronics neurostimulator, and I've never had the problems that you describe. I have been told that my stimulator can potentially set off anti-theft alarms & metal detectors, but it has never done so (although I always make sure to alert airport security of the potential ahead of time & have my stim ID card handy). Nor has my stimulator reacted in any way to those devices as to cause me pain.

So far the only thing that I've set off with my stimulator was my dog's electric fence collar one time when I was in the process of charging my stimulator. It must have picked up on the electric field from the charger & thought it was detecting the fence instead. Thankfully, the collar wasn't on my dog at the time!

Yes, I have a different brand of stimulator, but I can't imagine that what is happening to you is normal, even amongst people with Boston Scientific stims. I'd talk to (and maybe meet with) your rep to check and make sure that there isn't something funky going on with the settings, etc. They can also run diagnostic programs on the stimulator to make sure that everything is functioning properly.

Good luck! What your going through sure sounds miserable! I hope you can get it sorted out & the problem fixed!

Skeye
Posted 12/18/2013 4:35 PM (GMT 0)
I also have a Medtronics and haven't had any issues either.

I am with Skeye, get a hold of your Rep and see what they have to say.

Take care,
Bill
Posted 12/28/2013 11:25 AM (GMT 0)
Hi Amanda , I know what you are going though because I had the same problem but I had the metronics machine. I had to have it removed. And now I have the boston scientific machine and it works just fine. You should talk to your doctor. My first doctor didn't believe me. So she got upset and decided to remove the machine although I asked her if she could just replace it but she wouldn't. But since I was also seeing a doctor in buffalo that all deals with patiences that have RSD. He told me that the metronics stimulator was a older model and they didn't use that so he implanted the boston scs. And it works just perfect. But there my be a problem with that unite. If you can get it replaced that May just work for u.

Good luck.
S.C
Posted 12/28/2013 12:37 PM (GMT 0)
Hi Amanda,

I haven't had the serious jolting you describe, but I used to get a sensation change with passing through some anti theft devices if I hadn't turned my unit (St Jude) off. Only thing I can think of is that you're getting some sort of strange discharge effect - but it's not one I've heard of before. Best to talk with your rep and see what he/she has to say.

Laur
Posted 12/28/2013 12:37 PM (GMT 0)
Hi Amanda,

I haven't had the serious jolting you describe, but I used to get a sensation change with passing through some anti theft devices if I hadn't turned my unit (St Jude) off. Only thing I can think of is that you're getting some sort of strange discharge effect - but it's not one I've heard of before. Best to talk with your rep and see what he/she has to say.

Laura
Posted 1/5/2014 6:47 AM (GMT 0)
Dear Amanda,
I have RSD too , late stage, so I have had some other symptoms that we can talk about if it might help you at some time. Dystonia is a late stage movement which I have. But let's get back to you, Honey. You need to tell them to turn your SCS down. Whew! It is most cruel not to adjust it.
Go to the Americans With Disabilities Site/ There you will be able to find information that you will be able to print out and carry with you. Talk to your Dr about what is happening. He/She should be willing to comply with writing some sort of script to assist you with this inconvenience. These stores, if value their sales and reputations are valued will soon be more than happy to assist you in any way they can. Discrimination against anyone who has a disability of any kind is illegal!! Sorry, my little note won't help much when shopping but I do hope I can send you down a trail which is assistive. Please go back to the clinician who implanted your device. If it cannot be adjusted to a more even electrical stimulation, it is no better than the pain itself, Hon. Other measures may need to be taken.
Good luck with everything. All the Best. JK

PS Does anyone else have Generalized Dystonia? I am having a time of it as it feels as I am alone with this. I have done my best to keep this RSD hidden as much as possible. Why do I feel freakish? Actually when having a "storm" I DO LOOK like freak.
Posted 1/5/2014 9:18 PM (GMT 0)
JK - can see you're new, so hi and welcome. I'm into my 15th year with CRPS - full body now and mine too has caused dystonia. I've got fixed lower leg contractures and I know the horror of generalised storms too. Throw in myoclonic jerks for good measure and I'll join you in the freak show shocked Have you managed any control over yours? I'm doing okay on that side of things with a combination of high dose intrathecal baclofen and prn clonazepam - but my worst episode (thankfully I don't remember it, but scared the living daylights out of my parents and even my PM) was 48 hours, triggered by a ketamine infusion that went a bit wrong.

Laura
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