DO you have a Medical Alert Bracelet for CHIARI?

[selmaS]

I was wondering if neone hear has gotten a medical alert bracelet.

If we are in a MVA or some other incident and con not reply we need to be able to let the ER techs know our condition.

Did you know that Med techs in the ER are trained to check cell phones ICE feature?
A-yes
B- no
Do you wear a medical bracelet
C- yes
D-no
If you have Ice on your cell phone is your chiari dr listed?
E- yes
F-no

[drewlevas]

I have a medicalert braclet, I like it I can update it by calling medicalert so every time I have changes in my health or medication I can advise them and they update my account and send me a new wallet card. They only downfall is the yearly membership fees.

[wnzday]

Great idea. I had one 2 years ago when I still ahd my nuerostimulator implant as it had several cautions that went along with it, such as no pumping gas when turned on, no MRI's, etc. But I guess I never thought about one for Chiari, lol. I could just order a new tag for the current bracelet i have, Thanks for the tip! :)

[selmaS]

  Well it is very appreciated : )

[JoysDivision]

Glad to help... I don't think I would have thought of those, if I hadn't tried pulling numbers off of people's phones!

[selmaS]

  Thanks for adding ur perspective of a medic and some ways ICE does not help...I had not thought of some of those incidents causing it to be ineffective.


Thanks again : )

[JoysDivision]

I have had a medic alert bracelet for a few years, since I'm allergic to pennicillin. I was about to replace it to add "Bees" when I was diagnosed with Type 1, and thought "You know, I should google this before I get a new one printed."  Great info, thanks!

For the record, when I was younger, I was an EMT in NJ... most squads are getting better about checking phones for ICE... the main things you have to remember are: 1) It doesn't really work if your phone is powered down/ out of battery; 2) It doesn't work if your phone is password protected-- we don't know your password!  Honestly, the more places you can have vital information-- a bracelet, a wallet card, in your glove box-- the better. I'd not heard of the tattoos (although I have seen similar for dog tags), but that makes sense, too, unless your religon prohibits modification.

[Shelltn]

I'm so sorry for your family's loss, we suffered a similar tragedy in Dec 2008, when my 15 year old niece died in a car accident. She was with a coupleof classmates & she had her sister's cell phone (which wasn't found at the site but come to find out, the girl driving-who caused the accident by driving in excess of 100 mph on a 35 mph rd while taking pics of her speedometer & texting& lost control after going airborne & hit a pick up truck head on, the 2 class mates walked away, my niece did not & the driver has had my niece's phone this entire time. )Oh yea, to this day, the driver has not even received a speeding ticket for the accident, much less been charged with reckless driving or vehicular manslaughter.... My brother is still trying to get justice for his daughter.

Anyway, sorry I kinda went off track, very intense subject matter even after 3 years.... I miss her every day, she was 6 months  younger than my daughter to the very day, so they were very close.  

The Andy card is a great idea... Sometimes we don't have our wallet with us, or we're in a different vehicle, jewelry can be lost or stolen (just like my niece's phone, which another classmate just recently returned it to my exsisinlaw after seeing that the driver is who stole it from the scene &she tiok it from the driver without her knowing it&my exsisinlaw still can't look at it yet. I told her there may be something we need on it for the criminal charges, but she can't do it yet)


Ok,  I gotta get off of  here...

Medalert tattoos with info sound great, too....

[amber1113]

My brother was killed in a car accident in november 2010. He had ICE on his phone but his phone was demolished. It took 4days to find his phone. his wreck happened at 830 in the morning. My family did not find out that he was in a wreck till almost 1 in the afternoon. Since the wreck my mother has started the ANDY card foundation. The andy card is a card to carry emergency contacts on. It is very bright colored and we are working with state troopers and others. State troopers in the NC area know to look for the ANDY card in an  accident. www.andyhovis.org is the website where more information can be found

[selmaS]

I agree with u...and that is y u have to assume the responders may not know and google the conditions...u want the info they find to best describe how u r affected and the best way for them to handle u.

[drewlevas]

Thanks I needed to ask, its not always easy to know which words to put on a medicalert bracellet, so the first responders can help us at their best.

[selmaS]

  If u were dx'd chiari u want to have chiari...not Cerebral tonsil ectopia as  the deff for that is low lying tonsils that do not meet the criteria for chiari malformation.

As for the syringomyelia/hydromyelia if u were dx'd with it add it.....nething the medics can know to aid u when u can not give them the info should be included.

  JMHO

[drewlevas]

I am thinking about getting a medicalert bracelet!

But I was wondering should I write Chiari type 1 malformation on it or Cerebellar tosil ectopia or even both on it! And does I mention hydromyelia/syringomyelia on it. Along with some of my symptomes like heart arythimia?

[selmaS]

  Very sounds advice...thanks for sharing : )

[jiggle93]

stumbled across this today after a week of wondering if such a thing was avaliable. Have thought about the tattoo idea myself. I have a daughter with gluclose problems and have been thinking abouth getting her one as well.
Just to add a comment, I love the wallet and glove box idea - if I were to be in an accident, the chances that my husband would be with me are very high. Having him as my ICE may not be such a great idea in this scenerio. Please list at least 1 person that is not a family member, but has the knowledge in the event that the entire family would be unable to offer info.

[ChiariWolf]

Thanks we'll check it out.

[selmaS]

  Here is a link to get bracelets-http://americanmedical-id.com/

I think there was another site, I have to look to see where that info is.....will get back to u on that.

   "selma"

[ChiariWolf]

Funny this topic is here and for so long yet I've never ran accross it.

My wife and I have discussed this numerous times. But does anyone know of a good source for med braclets of this type?

CW

[selmaS]

  Hi and welcome to the Chiari forum.

IMHO it is worth getting the bracelet ...Chiari where it may not be well known on ur Island it is not well known here either....so, what ever we can do for awareness be it wearing a bracelet and explaining what it is to to others then that is wheat we should do.

EMT's r trained to look for med alert bracelets...and they can contact the hospital for info on a condition they r not well informed on.....

an ounce of prevention is worth a pound of cure I think the saying goes....

"selma"

[Joviskn]

Hi there, I was diagnosed in 2007 with Chiari One and I live on a small island in the Caribbean (St Kitts) and the truth is I dont think anyone here has ever heard about my condition so sometimes when I get the severe headaches its hard to explain and sometimes i water it down to .."its just a complicated condition". The truth is i think alot about what would happen if i get into an accident and the AMT has to pick me up. I was thinking about the bracelet just this week and was just checking some out on wwwhopepaige.com (very stylish and great styles so i may get one. But my concern is, do they work? do the AMTs really look around on you to see if there is any alert anywhere? My concern is especially cuz i feel people on my island dont know much about this and I feel alone about it and dont know what to do about it. only a few family and friends know about my condition, but I dont think thats a good idea cuz what if it get so severe while hanging out? i dont want them to just force me to lay down or do this or that? how can I make people aware of this? and in a place where not much people know about Chiari Mal, is it worth getting a bracelet?

Jo SKN

[Alicia696]

Thank you for the info. Im going to look into that today. :)

Alicia

[jorlex137]

I ordered my stuff from:
http://www.americanmedical-id.com/

My wallet id has a website and a spot for my access code!  Where I can keep a online medical record for ER staff.  I've not done it yet, but should!
I just wrote my info on the card, and not worried about adding extensive stuff.

Here is the sport bracelet I have:
http://www.americanmedical-id.com/marketplace/category.php?mastercategory=bracelets&bbscrollerpage=8&scrollcat=brac_sport

[selmaS]

http://www.medicalidstore.com/

[Alicia696]

Hi, I was wondering where you get the sport barcelet? I have a bad reaction to alot of jewlery. Any help on where to find one woulod be great. :)

Alicia

[jorlex137]

I think for your family's sake as well as your own, it's very important!  Easy fix as well!  What a great post all!