A suggestion from my caring wife

Last year, I was diagnosed with AVM. (2) Embolizations followed by stroke like symptoms and now a 9 month recovery. Also had cyberknife radiation in December. Now that I am back to work almost full time, and have to travel alone, she is concerned about me.

She has suggested that I should carry a note in my wallet about AVM diagnosis. I think it is a great idea. Just in case there is an emergency, the medical team will not need to spend precious time in finding out the problem. I will also write my neurosurgeon’s name and contact number on the note.

How about also including blood group just in case blood transfusion is required?

Would welcome more suggestions. Of course, the note has to be very short and accurate.

Hey Manny,
I would definitely recomment a medical alert bracelet. I started wearing mine right after I was initially rushed to the hospital and diagnosed. Sometimes I get nervous going out on my own (to school or to the store or on my daily “walks”) but I know that if something should happen it will be found and the medical team will know exactly what I have and what to do. You can order them online at
www.americanmedical-id.com. They have a pretty wide range of option and they offer them in gold, silver, and stainless steal… I got the stainless steel one. You can use both the front and the back for engraving. On the front I put that I have an AVM and am at risk for seizures another hemorrhage and on the back I listed my emergency contact phone numbers. I hope this helps and good luck with everything in the future.

My son used to have Epilepsy. His meds were changing every couple of months, so we looked at the med alert cards and made our own. He kept it right next to his id card/driver’s license.

It contained all the info about his seizure potential, the drugs and amounts he was on, and the contact info.

Made us feel better and he never had to use it.

Ron, KS

I recommend a medical ID bracelet from MedicAlert as well as a wallet card. MedicAlert charges something like $25 a year. You tell them the basics that you want to be engraved on the bracelet, but you also give them your full medical record. Their phone number is engraved on the bracelet as well, so they can be called in case of emergency. (They’ll also advise you about what to put on the bracelet.) With a rare condition like an AVM, I think it’s worth paying to make sure your full record is available. www.medicalert.org

As far as what info to include on your wallet card, I recommend spelling out arteriovenous malformation, giving its location (brain?), naming any medicine (and dosage) you take, naming any equipment/material you have in place (coils? surgical glue?), and giving the dates and names of your procedures. Name any other conditions you have, too. Also, try to write this on something that’s printed up to look medical, so it stands out from the other things in your wallet.

I hope you never need to use it, but you do feel better having it!

Using the word processor I made up a little card that I carry with my drivers licence. On it I have the information that I have an aneurysm that is embolized and where it is located. I’ve also included other medical information on it that could be pertinent in the event of an emergency.

I want to get a medical ID bracelet too. Some of them can be very expensive, but there are some more affordable ones too.

I’m going to check out the link Jessica gave - thanks for that Jessica.

I’d also like to mention that I think a medic alert bracelet is a better idea than a necklace for the reason that emergency first responders might not always look for a necklace on someone but rather are more accustomed to looking for a bracelet on people who may not be able to speak for themselves in an emergency situation.

Having a bracelet vs a necklace was something a nurse once told me might be a better choice, for the reason mentioned above.