Chiari Malformation Community
DO you have a Medical Alert Bracelet for CHIARI?
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DO you have a Medical Alert Bracelet for CHIARI?

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
0%
 (0) 
A- yes
0%
 (0) 
B- no
16%
 (1) 
C- yes
33%
 (2) 
D - no
16%
 (1) 
E -yes
16%
 (1) 
F - no
16%
 (1) 
add comments below
6 Members voted
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48 Comments Post a Comment
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906843_tn?1245212494
Yes they are trained for ICE but often treat first and then worry about ICE. medi alert would be great if anyone in the med pro knew what chiari was. I might still get one just to be safe. I actually printed out the simple general info and Chiari awareness sheet with the diagram and put my Dr's # on it and have 1 in my purse and 1 in my glove box. I have had experiences in the past where i have verbal issues and thought it would be a good idea to have this on hand in case of a problem or accident. How cool you brought it up. ( it has also been neat to have on hand when I meet jerks that look at me like I am nutso and hand them one and walk off)
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908973_tn?1244513903
When voting, I was unable to select more than one answer, so answered only the medical bracelet question.

Honestly, since my diagnosis was so recent (February 09) and I hadn't done a lot of research, I didn't think my condition was/could be as serious as it is.

Also, I was unaware of ICE, so appreciate you mentioning it. I doubt that I would list my NS as a contact, but would definitely list family and friends who are aware of my condition and could speak on my behalf.

Great idea, thanks for the post!!
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620923_tn?1405964489
U can vote a second time after u have logged off to include multiple choices.....but this is good too to use the comment section!!

In fact a bit better we get more info!! : )

And as Peachy said...a list of ur conditions in the glove box and ur walet where ur ID is could be very helpful as well...I know my EDS condition is something I ned to let them know as well as my chiari and cranial instability.

I am glad this was helpful.

"selma"
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555358_tn?1292535661
Ya know, I've never really thought about doing the med alert. Hmm, will have to give that some thought.
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759386_tn?1324565724
When I had my accident on the 25th of last month that was the first thing that I told the firemen and the rescue squad members as well as the 9-1-1 operator when my wife called them.

I just gave them a quick explanation of what Chairi was and they were pleased with that, they were very careful and treated my neck and back as if it were gold so to speak.  They were very careful putting me on a back board c collar and wanted to know if I had balcked out during being rear ended..... I did not know that there was a braclet that one could wear, I need to look into getting one someplace.


Roy
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620923_tn?1405964489
Hi Roy....yes u can get a bracelet for just about ne condition.Just be thankful u were able to talk to the firemen and rescue workers...imagine if u weren't able to.
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620923_tn?1405964489
bump
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1179332_tn?1297482590
I don't have one...should I??

No one has really mentioned it to me.

Carolyn
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785584_tn?1273252832
I can't vote???  
I have a medical alert bracelet because I have severe allergies that cause me to go into anaphylatic shock.
I revised it to add that I have had brain surgery.
I figure that would be simple enough for a ER staff to figure out!  

I have a medical card in my wallet that list my doctors and more detailed information.
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620923_tn?1405964489
Carolyn...yes we all should be as prepared as Jen....wow u rock having all that ready to go....and do not forget ur ICE in ur cell phones too : )
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1041839_tn?1278685446
selma, what is ICE on your phone?
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980510_tn?1282014546
cant vote either, but i do not have one but have given it much thought and instead of wearing a bracelet i think iam going to get the medical alert symbol tattooed on the inside wrist, and carry the card in my wallet...with having hydro i was told i had to have a bracelet or some sort of alert thingy....

my husband is my ICE and he knows all the gory details lol
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1179332_tn?1297482590
I'm with Shannon...what is ICE??

I don't think I would be very good with a bracelet..I have very sensitive skin and can't wear my wedding ring half the time. So..I will check into the other things mentioned.

Thanks guys
Carolyn
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957944_tn?1259190855
Hi All,

After my adult daughter had decompression surgery last summer (by Dr. Oro in Denver), I got her a medic alert bracelet for her birthday.  I used the website below and they have lots of styles and metals to choose from.  Also necklaces.

http://americanmedical-id.com/

You can have them engrave specifics.  Katie's bracelet has Chiar One Malformation, the date of her decompression surgery, and indicates there's a plate in her head and care should be taken with her neck. It also has her blood type.  It's surprising how much info you can put on the bracelets.

I like the wrist tatoo idea though.  You wouldn't have to worry about losing it.  :-)

Carrie in AK
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980510_tn?1282014546
ICE means  incase of emergency and has your contact #
like on my cell-  i have ICE-hubby-*his name* then phone number
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1041839_tn?1278685446
Thanks lisa, makes sense now lol I just couldn't figure it out! And Carrie, thanks for the info!
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620923_tn?1405964489
Hi Sorry I wasn't on to see u didn't know ICE....Thanks Carrie for answering that...how r u and ur DD...it's been awhile since I saw u on the forum....I pray all is well.

"selma"
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980510_tn?1282014546
a link to make an id card

http://www.medids.com/free-medID-card.html
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785584_tn?1273252832
Your wallet is important, they go through that pretty fast!  Just remember cell phones are often lost when in accident, where is wallet is easier to find in purse.  
My hubby is a police officer and does accident investigations,
I asked him about it, he said if there is a accident, belongs are everywhere and cell phones usually are in a ditch or what not. Where as to a purse, it's bigger and easier to find.  
Wallets are usually on the man's person, back wallet.
The hospital will contact emergency staff and request they find more info.
He feels wallet is pretty important as they start looking for identification first.  
NOT saying the ICE is not a good option as well, but make sure you place info in that wallet as well!!!!  
I have id necklace and bracelet.  I got a sport bracelet....great for those with allergies!  It's made of fabric and clips on!  
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1179332_tn?1297482590
Thanks guys for that info...especially for that link!!

I will start there and then look into seeing if I can get the sport bracelet too.

Carolyn
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620923_tn?1405964489
Jen u r so right about having the info in ur wallet as well....it is all important and we do not have neone from teh drs office telling us about this.
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1017160_tn?1251507208
Im gald you brought this question up. I've been wondering this for awhile. I finally heard from the NS they got my research on my MRI from Miami back and i have to see my NS on March 22nd. So i will let you know what they say.

Alicia
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620923_tn?1405964489
Alicia...so glad this thread was helpful and do keep us posted on how the visit goes..............Good Luck : )

"selma"
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979826_tn?1389039958
my dr recomended this to us and we just ordered it!
molly
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785584_tn?1273252832
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!  
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1017160_tn?1251507208
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
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620923_tn?1405964489
http://www.medicalidstore.com/
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785584_tn?1273252832
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
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1017160_tn?1251507208
Thank you for the info. Im going to look into that today. :)

Alicia
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Avatar_n_tn
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
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620923_tn?1405964489

  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"
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992677_tn?1337358095
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
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620923_tn?1405964489

  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"
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992677_tn?1337358095
Thanks we'll check it out.
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1827123_tn?1383868876
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.
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620923_tn?1405964489

  Very sounds advice...thanks for sharing : )
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1755089_tn?1376057155
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?
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620923_tn?1405964489

  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
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1755089_tn?1376057155
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.
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620923_tn?1405964489

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.
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Avatar_f_tn
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
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Avatar_f_tn
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....
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4763714_tn?1358875843
I have had a medic alert bracelet for a few years, since I'm allergic to pennicillin (penicillin). 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.
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620923_tn?1405964489

  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 : )
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4763714_tn?1358875843
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!

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620923_tn?1405964489

  Well it is very appreciated : )
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4689100_tn?1358801534
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! :)
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1755089_tn?1376057155
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.
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