quick question for those of you with stimulators regarding medical alert bracelets

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skeye
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   Posted 7/18/2010 8:51 PM (GMT -7)   
I know certain medical procedures, such as cardiac defibrillation & MRI's, are contraindicated for those with stimulators. So I was just wondering, if you have an implanted neurostimulator, should you wear a medical alert bracelet stating that you have a stimulator (just in case there was some kind of emergency)?

I'm going to ask my Medtronics rep his opinion on this when I see him tomorrow at my doctor's appointment. My father (a physician) thinks that it would probably be a good idea to wear one, but he didn't think of such a thing until I asked him about it. Do any of you with stimulators have medical alert bracelets?

Thanks!

Skeye

momtofourangels
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Date Joined Apr 2010
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   Posted 7/18/2010 10:10 PM (GMT -7)   
Hey Skeye.  I don't have a stimulator, but I was just wondering how your's is working.  I hope it's doing good.
 
love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip,  ddd, spinal stenosis, bone spurs, hypothyroidism, typeII diabetes, asthma, allergies, high blood pressure, polycystic ovary syndrome, PTSD, depression, anxiety


straydog
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Date Joined Feb 2003
Total Posts : 13473
   Posted 7/19/2010 9:12 AM (GMT -7)   
Skeye you should get a card from Medtronics to keep in your wallet to carry at all times. I have cards for my Port A Cath and one for my pump.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


skeye
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Date Joined Mar 2008
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   Posted 7/19/2010 6:01 PM (GMT -7)   
Thanks Susie,

I asked my Medtronics rep today & he said that it was a great question, but he doesn't think that it is necessary, as long as I carry my implant card with me. Right now I have a temporary implant card, but I should be getting a permanent one in the mail sometime within the next couple weeks.


Loretta,

I'm really liking the stimulator so far. It reduces my pain about 50% (from an 8/7 to a 5/4), although it isn't always effective (but apparently that is normal). I got it reprogrammed for the first time today & I'm already noticing a difference from the tweaking my rep did. When they programmed the stimulator in post-op they had a hard time because I was still somewhat numb from the local anesthesia they used, so we were able to fine-tune things today. I think my surgeon is thrilled. I got two big hugs from him at my ~1 wk follow-up today.

Skeye

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 7/19/2010 11:55 PM (GMT -7)   
Skeye,
I read your post on the update thread and I'm thrilled to see how well you're doing! Yippee! I wish I could jump up and down and dance around in your honor, but I'll have to do those things in my head.

The medic alert thing is an interesting issue, not just for the stim but for lots of us with medical conditions. I've never had one, but know I should. Didn't I read somewhere that eventually there will be a kind of microchip available for humans (like now for pets) that would contain all medical conditions, and could even be updated? Maybe it was in a dream! lol

Cheers to you, Skeye!

PaLady

LLPLUV
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Date Joined Mar 2009
Total Posts : 1158
   Posted 7/20/2010 7:52 AM (GMT -7)   
All these threads about implants... its wonderful because mine is coming up and I can get all the information in the world.

Thanks everyone for posting and I hope you all have a wonderful week

Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........


skeye
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Date Joined Mar 2008
Total Posts : 2976
   Posted 7/20/2010 7:00 PM (GMT -7)   
Palady,

Right now the pet microchips just contain owner info & dog registration info, so that you can tell who the dog belongs to if it happens to get lost & then found by someone. But I too have heard that microchips containing your health info are coming in the future. One of the problems with the pet microchips though, is that different companies produce different chips & those chips can only be read by that company's reader. So you could theoretically have a microchipped dog, yet not know it was microchipped because the chip is a different brand than the reader & you can't necessarily feel the microchip under the skin. However there are a couple of major brands & most places that have readers have readers for each of the major brands. It will be interesting to see if we end up having similar issues with microchips for humans.

Laurie,

Glad I can help. My experiences are probably a little different than yours will be though, because I don't have an SCS, but a PNS (peripheral nerve stimulator). It's the same device & same concept, but my electrodes are on cranial nerves (branches of the trigeminal) rather than spinal nerves.

Skeye

BionicWoman
Regular Member


Date Joined Jul 2008
Total Posts : 243
   Posted 7/23/2010 11:03 AM (GMT -7)   
I haven't been around for a while, but I was especially bored today and had some time to stop by.

PA, I think you may be thinking of the VeriMed implantable patient ID chip. It's implanted in humans the same way the chips are implanted in pets. The medical information isn't in the chip itself - it just has an ID number. The scanner itself connects to the database using wireless technology and legitimate emergency responders can retrieve the medical records associated with the ID number. VeriMed was approved by the FDA and actively marketed for a while, but they're not actively marketing them anymore, probably because they're cost prohibitive and have some big limitations. Unless the emergency responders have an active VeriMed brand scanner, there's no way to get the ID number out of the chip, and unless you wear a bracelet or carry an ID card, paramedics wouldn't know you have the chip implanted, so it doesn't really offer much more than a subscription to Medicalert or AccessID.

I wear a medical alert bracelet for my SCS, and never, ever leave home without it on. I can see where the rep would think the card is enough, but I don't. Women, especially, can't count on emergency responders finding that card, because it's tucked away in our purse. It's not like a man's wallet being inside his pocket. I've gone through so many accident scenarios in my head, and not a single one of them has ever included a paramedic stopping to say "hey, did anyone grab her purse??" as they're loading my lifeless body into the back of an ambulance.

In a car accident, my purse could be thrown around in the vehicle or even completely out of the vehicle, and end up somewhere the paramedics can't see it or get to it. If I'm walking through the grocery store and have some sort of event on the tampon aisle, there's no guarantee my purse would stay with me while people tried to help and/or the paramedics assessed the situation. It could be in a shopping buggy that gets moved out of the way, a well-meaning store employee could pick up my purse to protect it, or a not so well-meaning person could take the opportunity to steal it. In any case, the paramedics are going to be focusing on me and my condition, not looking around to see if I have a purse with me.

Because of the nature of my spine problems, I have certain reflexes that are diminished or absent. If I were to arrive at the hospital unconscious or in an altered state of consciousness after a possible head injury, the doctor would likely assume those absent reflexes are an acute problem rather than a chronic problem. I have no doubt the doctor would order an MRI, because it's the current standard of care for that injury combination. If my purse/wallet has been lost along the way or the doctor has no previous experience with the SCS implants, s/he would have no idea that the MRI would most likely kill me.

On top of that, I live in a VERY rural area and the SCS implant isn't a common treatment around here, because there's no local doctor doing the implants. There's not even a local pain management doctor here. I travel over an hour (an interstate highway hour, not downtown traffic hour) to get to my pain doctor and he's one of two in a 4-hour radius that does the implants. Just knowing I have the implant (which is all the card tells them) isn't enough information for the doctors and medical staff here, because they don't know what the SCS is, what it does, or what medical interventions are limited. The card might as well say είστε γιατρός.

Several months ago, I had to go to the ER for a semi-related problem and once they finished treating the problem, the ER doctor asked if I would mind speaking to the rest of the staff about the SCS implant. All the other doctors, medical students, and nurses that weren't with other patients came in and gathered around my gurney, while I explained what the SCS was and how it worked. Then they all took turns palpating my battery pack and looking at my remote control settings. It was really kind of sad that I had to pay the ER fees out of pocket, with no insurance, and I didn't even get a discount for my willingness to provide staff education. smhair

But anway, I absolutely believe it's safest to have the bracelet that's visible, that's attached to me, that's not going to get lost along the way, and that has instructions for what not to do, just in case I end up with an inexperienced doctor.

I facilitate a SCS support group through my doctor's office and once a month, about 15 people come from the 4 states that border in my area. A couple of months ago, this topic came up and several of us were comparing bracelets, while talking about the different bracelets that several of us have made or bought. The next meeting, we all brought our "collections" for a sort of show and tell session, after the main group topic. There was one woman in particular that makes and sells medical alert bracelets and put all of ours to absolute SHAME! I ended up buying a whole new bracelet from her! Here's a (lousy) picture - VIEW IMAGE I'm such a girly girl for a BionicWoman. tongue

I know there's tons of places online to get the bracelets, but I have a special affinity for this woman, because she's "one of us," for lack of a better description. She has an SCS implant for back and leg pain, and she knows the battle with the beast very, very well. I'm always interested in supporting "one of us" so it was money well spent. She sells her handmade bracelets on Etsy and if anyone is interested, I can pass along her contact information. I don't think I can post the direct link to her Etsy store here, but I'll be happy to share that privately - or one of the mods can let me know if it's ok to post the link.

And that's my 2 cents on the topic wink
The difference between perseverance and obstinacy is that one comes from a strong will, and the other from a strong won't. ~Henry Ward Beecher


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/23/2010 4:06 PM (GMT -7)   
Thanks BionicWoman! I really appreciate your input. I got my permanent implant card in the mail today & immediately put it in my wallet, but you're absolutely right about the purse situation. I'm still seriously thinking about getting a medic alert bracelet.

Skeye

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2283
   Posted 7/26/2010 4:54 PM (GMT -7)   
For what it's worth, I actually did have a severe asthma attack to where I couldn't breathe & my PCP sent me to the ER (without telling them -- oops!). The first thing they did was go to my wallet. I put my SCS card with my driver's license & blood type card. They found it right away.

Now, I wasn't unconscious. By the time I got to the ER, I could barely move (mostly from walking), but I could hold up my inhaler. But they got me confused with someone else & thought I needed a trach, plus they wanted to run some more tests. While I was shaking my head furiously, they decided to check my id. Right away they found my card & marked me "NO MRI's".

In fairness, I do live in Chicago. Even though SCS's are still pretty rare, a lot of people know that even the young can have pacemakers, metal screws/rods in their knees and elbows & various other random things that could be dangerous in combination with the MRI machines. Skeye, your doctor might be able to give you a better idea about what's needed in your area [I wouldn't trust the reps; they just say what they're trained to say].

Medicalert bracelet is safest, but some of us work in fields where we already have enough problems with mean people in the workplace & don't need one more thing for them to gossip about -- but if your area is like Bionic's maybe forget the gossip & protect yourself from possible issues.

Have you looked into whether the MRI thing is still an issue? My PM said there's one of those type of things (NS or SCS, not sure) that now has been shown to be safe with MRI's. Plus, some countries allow testing. I know Spain has done trials with BS SCS units & MRI's and the people came through with no damage. Mices and peopleses are not the same. :) I'm glad there are some places in this world that allow people to sign up for tests so we can find these things out. But it's a tough call. It has not been shown safe in the US & I'm not sure whether anyone anywhere is testing the unit you got.

best wishes,
frances

skeye
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Date Joined Mar 2008
Total Posts : 2976
   Posted 7/26/2010 6:14 PM (GMT -7)   
Hi Frances,

Thanks for your input. I'm definitely going to talk to my primary doc about this when I see him in a couple weeks. I do live in a small rural community & I'm not sure how prevalent SCS's are around here. I've also read some studies about SCS's actually being safe in MRI machines, but like the ones you read, they were European studies. As far as I know, an SCS + MRI machine in the US is a no-no, although I have a feeling that a lot of that is just because of liability issues.

You also make a good point about the medic-alert bracelet possibly drawing more attention to myself. My Medtronics rep mentioned the same thing. I'm not sure how I feel about that. Everyone that I work with knows about my PNS (it's a really small office), but then again, clients do not know & I'd just as soon not announce it to them. I generally don't go flaunting my status as a CP patient. But I just worry somewhat because I do work with animals (including farm animals) & animals can be unpredictable. It's less of a matter of "if" I get hurt than it is "when" I get hurt. Hopefully I'll never be injured badly enough that I can't tell the medical team about my PNS, but I just want to make sure that I am prepared if something were to happen.

Skeye

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/26/2010 11:11 PM (GMT -7)   
Skeye,
One option might be wearing the alert on a longer chain around your neck and putting it under your clothes. Course that depends on what you're wearing. :-)

I don't know if it's relevant, but with my lumber fusion I have screws and such and can still have MRI's but have to have them with contrast from now on. I do know my NS told me it had to do with the material that he used in all the hardware.

BTW, Skeye, how are you doing?

PaLady

straydog
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Date Joined Feb 2003
Total Posts : 13473
   Posted 7/26/2010 11:28 PM (GMT -7)   
Skeye not sure at about the SCS and the MRI machines. I do know one of the things they have talked about is the metal inside of the person heating up from the MRI machines. With it being computerized the magets can throw things off to the point of shutting the pain pump off. I am surprised that you were not given a booklet with all the do's and don't's. I was sent home with one with my pump and it talks about being around high lines the whole bit. I would be very tempted to call the maker of your unit and ask if they provide booklets to the patients with this sort of info in it. Just a thought.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2283
   Posted 7/27/2010 7:11 AM (GMT -7)   
Stray,
Skeye does indirectly mention about the issue with it heating up in her post to me. But all the tests that have been done are done on lab rats & such. The FDA has banned testing MRI's on humans with implanted neurostimulators. But other countries have allowed testing & found that humans react differently than the lab rats. It does heat up, but not to the point of burning anything or causing any damage. It doesn't heat up quite as hot as with the lab pets.

So it is recommended in the US that MRI's not be used on patients with SCS's implanted. It is done sometimes though in cases of life-or-death. The implant surgeon must sign off on it & take responsibility for whatever happens. I've talked to my surgeon about that & with my latest thyroid test he said that if they try everything else & can't figure it out he would sign off on me getting the MRI (maybe I'd have to sign a release, but if it's a choice of risking damage to the unit/minuscule possibility of burns vs. organ failure, I'd sign what I have to).

I'm not at all telling other people what to do, just pointing out that the studies that have been done have all shown no adverse events. And the limited number of emergency situations in the US where someone with an SCS got an MRI have yet to result in any reported adverse events.

SKEYE,
Before I read those studies, I did look into it a bit more. I couldn't do the necklaces b/c I worked with machines in which they could get caught & I could get hurt (I got a name badge caught one time; they had to get facility services to cut me out of it, so it was a real possibility). I would think the same would hold true working with animals. I did find an alert bracelet that was an anklet. The tech has to check you head to toe for jewelry and piercings before running an MRI, so even though it wouldn't be visible to first responders, it should be found before starting the MRI. Maybe that's something to consider, assuming you wear pants.

take care,
frances

But like anything, there is a risk and if something did happen everyone under creation would be sued. So, no trials are allowed. MRI's are very strongly discouraged & doctors have to take the risk on themselves for all but the very newest units (there's at least one new type of lead that has been tested safe & is FDA-approved with MRI's)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 7/27/2010 12:40 PM (GMT -7)   
You know this has really turned into an interesting thread. I sort of like the anklet thing Frances mentioned.

The only thing that bothers me is we all know what the medical professionals are suppose to do at hospitals and such, but I have seen too many medical malpractice cases not just against drs either to ever rely on a hospital employee to look for metal on me before putting me in a machine if I were unable to speak. I have just about convinced myself there is no 100% guarantee of being protected from this happening, whether you are carrying a card or wearing some sort of medical alert bracelet or whatever. I have a lot of medication allergies too. I was admitted once thru ER for a bad crohns flare up and told the gastro they called in to take care of me that I could not tolerate steroids of any kind. He asked why, so I told him I go into CHF, he said really, well you know that is a possible side effect. The weasel gave me steroids anyway and when I went into CHF after the nurses calling and alerting him I was in trouble he had the nerve to come to my room and ask what happened. I just don't trust many drs or the hospitals for that matter.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/27/2010 6:32 PM (GMT -7)   
Susie,

Yes, the Medtronics people did provide me with a list of "do's & don'ts" for the SCS (in the form of several booklets & a dvd). MRI's of course are on the list of "don'ts," which is partly why I wanted to look into a med-alert bracelet, in case I ever get put in a situation where I need some kind of emergency testing.

Frances,

Thanks for the suggestion about the anklet. I'll definitely look into that.

Palady,

I'm doing fabulously. I'm still getting around 50% relief & haven't had any problems with the stim thus far. I posted on the Monday check-in thread that my eye alignment has even improved 30% since the stim was implanted (due to the decreased pain)! I think I'm sleeping a little better too. I'm not necessarily sleeping more, but my quality of sleep has improved. Overall I couldn't be happier with the stim. I am so glad that I fought my insurance company to get them to approve the trial & the implant.

Skeye

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 7/28/2010 8:30 AM (GMT -7)   
Skeye thats terrific you finally have something that is helping you. I hope it continues.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/28/2010 1:12 PM (GMT -7)   
Skeye,
Sorry I missed your post on the check in thread. This is terrific news! I am so happy for you! It sounds like you are having even more improvements than you might have expected or even hoped for and that's wonderful!

Hugs and Cheers!!!!

PaLady
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