Hello all

With a very good suggestion from birdbomb and past experiences myself, I came up with some info you can give your local ambulance service and fire dept.
unfortunately the VNS is not yet taught to EMTs and paramedics on a wide scale. if you didnt already know we VNS patients are a very small community worldwide with only 25,000 of us. that is a small number compared to the total population.

a good way to get your local rescuers informed is to stop by and have a chat with them. THEY DO NOT MIND A BIT. we actually like to talk to people and learn new ways to do a better job.

Here's what you do:

stop by your local fire station or where ever the help will come from if you call 911

tell them who you are and that you a have a VNS implant.

if they are not familiar with VNS tell them all the info you can about it

make sure you show them the signs (the left chest bulge and especially the wire)

if you dont mind let them feel the implant or tell them it feels just like a pacemaker.

LET THEM FEEL THE WIRE, this is what is not normal to us. this may save a life down the line and it may be yours. in some cases it appears to be what we call JVD, which is juggular venous distention. in many cases especially in trauma situations it is normal for us to start a large IV in the external juggular vein for rapid fluid replacement. the danger to you is clear, it will damage the wire causing an unneeded surgery to replace the wire. or the worst case scenario is severe damage to the vagus nerve which is wired into many important parts of our bodies which will cause alot of problems.

show them the magnet and show them how to use it, if they work on you or someone else later they will recognise it and use it instead of resorting to medications first which is always a plus. this is also why you should wear the magnet that comes from cyberonics instead of a magnet bracelet or a more stylish magnet, the ugly blue and purple magnets are colored that way to get our attention.

KNOWLEDGE IS POWER dont wait for the info trickle down in the medical field to inform them for you, if you tell them and they already know, it will only refresh their memories.

PLEASE USE THIS INFORMATION it may save a life, maybe your own.


thank you


Kevin R Harkness
EMT-I/fire safety officer
HEMS/Otis fire district

Thanks so much for posting.
I think it's a great idea, and would do it if I still had my VNS in. The town I live in barely knew what to do with a seizure, I watched them last year handle a call. There was a young boy seizing on the side walk. I wanted to go and talk to them about how to handle seizures last year after watching them. I talked to the police cheif ( he happens to go to my church) asked if I could, he said he would have someone call me. Needless to say it never happened, I should of pushed harder.
But, while my VNS was in, most doctors I went to see were very open to learning all about it. I would think EMTs would be the same.
Again great idea!

I went to my local EMS and talked briefly with them, and they wanted me to print out some information for them. I have looked some on the internet, but did not find anything satisfactory, and the VNS website doesn't really have much. Does anyone know of a good article on VNS that I can go to? Thanks.

Amy

hello all. just wanted to let you know that I am currently writing a training class for fire/ems/police on the hazards and use of VNS. I am actually getting some great information from cyberonics and when im finished I will be giving a copy of the powerpoint presentation to cyberonics for distribution to departments all over the us. I will also be working on a short version that I can send via e-mail that can be printed out which I can hopefully post here as well as sending it to several ems training groups. any info on adverse events with ems will be great info for us to have so we can make sure it dosent happen to anyone else. thank you

Would you be willing to post it here for members to download?Send me a pm and we'll discuss it :)

This makes me think of when i was in the hospital in December. I was in emergency and unable to think straight and couldn't tell them even the medications i was taking. At least i had the sense after a little bit to point out my medic alert necklace, but they didn't know how to get in touch with medic alert or how to identify me to them. I was able to show them that the phone number was on my necklace and the person on the phone asked for the number on my emblem identifying me in their records. Medic alert had my doctor's names and phone numbers as well as a list of all my meds. I was surprised the hospital didn't even have the brains to call my wife. As i was getting back to where i could think straight i got the fellow who took me to the hospital to call her.

:im_033: That is a scary thought. I live in Columbus, Georgia, which is in 2nd or 3rd place in size after Atlanta, Georgia. ( Columbus is 200 miles from Atlanta ) Since losing weight I wear different types of shirts, instead of t-shirts, on some a small section of the scar on my chest will show. No one ever asks about my neck scar; it is white and not noticeable. The one on my chest still has a more purple look to it, especially if I get chilly ( hard to do in Georgia in the summertime, except some offices keep the air conditioner too low ) People do ask about that scar. Very, very few people have heard of the VNS. I have even looked for a VNS bracelet like they have for diabetics. Of course nobody carries anything like that. Maybe Cyberonics should consider manufactoring them.

If anyone knows where to locate or order one, please post it on this messageboard. :im_033:

:im_033: Labrat :im_033:

Howdy Amy!

Send 'em to my site:

The VNS From A Patient's Point Of View
http://www.howdydave.com/vns.html

Just a quick note in my on going current mess...........my cardiologist and he is one of the top in the nation and my hemotologist have no formal knowledge on this until. They deal with pacemakers yes, but this is a totally different concept..... I have educated them and they still honestly do not understand, knowing the function of the body how some of the side effects can occur. Some yes are a given but some are way out there and make no sense................I have become a big patient advocate and now drive all my doctors loonie. I want INFO and I want test results when they are taken, not a day or two later when the dr comes by. I thought the hospital would throw me out but as I put it, my insurance is paying for this, private and medicare, I have all right to know, he is going to bill my butt anyway lol. Love to all of everyone on here. Again, please to do not let my case be a deterent for you, just let it be something to give you questions to ask!!!!!!!
Anita

PS if anyone wants to talk off message board I have no problem but PLEASE put VNS message board in subject line or it gets deleted, I am a spam magnet

:im_033: I also drive all my doctors crazy, and I want the tests done and the results yesterday! I think it is called being a perfectionest!?!

I might e-mail you privately, i just read it real quick and this was the quickest way.

Thank you,

Labrat :im_033:

Also as far as EMS I was given a VNS card to carry with me at all times, it is hard to get an ID bracelet with anything but diabetes on it but it is possible. I now have to carry two cards for blood thinners and the tulip implants. I moved my drivers liscence to the back of my wallet so that they are the first and foremost to be seen. And oh help us, I read that the chips for human implants are coming out to hold all of our records...................I will carry paper. That one just gives me the geebies.............
Love and health and peace to all!!!!!
Anita

:hearye: I found a website that offers bracelets with anything you want engraved on them. I put: VNS no MRI then my husband's cell phone number. He will know to tell them about the magnet. When you go to the site, type in: bracelets :then Go. Go to the 3rd site shown and click it. You will see all kinds. They are all med alert braceletes. I chose to call the number and order mine. ( They even answered on Sunday) He said they have a very secure site, but we have just gone through inappropriate use for unauthrized e-mail accounts. That finally was over and a week later we were at a Five star hotel, my pocketbook was in the closet covered up with two duffel bag suitcases for about 45 minutes and during that time my debit and Sam's card was stolen out of our room. They spent over $2,000.00 before they were caught. I had blocked the account and it pop up as stolen. We're still waiting on the Bank to return our money.

You can order from the site with a credit/debit card if you like. That was just my choice.

The website is: http://medicalertbracelets.com


:im_033: Labrat :im_033:

hello all kevin here
just wanted to let you all know that is got a little sidetracked by another shoulder surgery for a while. I am now back on the job of writing the training course. It should be ready soon and it will be given to cyberonics for distribution and to anyone else that wants it. I will even try to consolidate one that you can print and take to your local ems\fire station. I will let you know as soon as it's done

kevin r harkness

Thank you Kevin. I am sure plenty of people will put it to good use and hopefully their local EMS will accept this information with open arms. :Great!:

Howdy Labrat!

I prefer MedicAlert myself.

http://www.medicalert.org

They will also put anything on your bracelet (or choose from their standards.)

The reason I like MedicAlert is because they also have a Call in phone number and a database.

In addition to my medical conditions, the MedicAlert database also contains:

• Contacts (medical & personal)
• A list of all of my meds
• My healthcare proxy
• Power of attorney
• Body donor documentation

All the caller has to do is to call MedicAlert, give them the membership number on my bracelet and all of that information is available to them.

You can also go to the MedicAlert site and update your information in their database.

I am new and I think this is my first post but my daughter who is 5 recently had the VNS impanted and the entire fire department came to the house to learn all about it. Granted they are all in love with our little one and they are so helpful and usually the first ones on scene so they are able to relay info to the paramedics when they come. We are so lucky to have them. They even checked into all their radios for us to make sure that they wouldn't interefere with her device. But always, I am in search of tips and pointers as we have only had the VNS since late February of this year and our girl is a rarer case being 5. Thanks for all the info I have received so far. I'm off to lurk about in other forums. YAY for this site! Health and hapiness toyou all! ~Cathy

Howdy Cathy!

WELCOME !

WOW and :Welcome: Cathy

It sounds like youy have a terriffic EMS in your area. It's wonderful when these guys are interested and willing to learn. I can imagine when the heart pacemaker first came out the struggles these people had dealing with EMS. It can be very difficult to get the ER departments to understand about VNS if they have never heard of it.

:im_033: Do you live in a small city? I can't imagine the whole firedepartment in our city coming over. My house wouldn't hold them all. That was very thoughtful and considerate of them, and shows how caring they are. I hope Haley does well with the VNS.

:im_033: Labrat :im_033: : party1 :

Something new that my insurance company is doing (UHC). They give us a card that is like a debit card that any doctors office or ER can swipe to find out emergency contact info on us, med info, etc. It's really nice. To bad I didn't have this insurance at the time I had two seizures while on vacation with a friend that was so scared that she couldn't think straight. Never had to use it yet (THANK GOD!!) but it's nice to know that I have it. Jenn

I have United Health Care. I haven't heard about that. Sounds like a great idea. How did you find out about it?

:im_033: Labrat :im_033:

I see you online and wanted to say hi...
I dont think we have met...

Thanks for the great info

sorry everyone, still workin on the class. i have written and presented several education courses, but by far this has turned into the most difficult because im having to start from scratch. the help cyberonics promised has yet to arrive and my neuro doc that was gonna help left the state. :Really Mad: but im not giving up, im trying to work on the course with one hand after a 3rd shoulder surgery and waiting on the 4th.
if all works out well i will have the class done and distributed this summer and then i might be off to iraq to help over there. will try and give an update a little more often and will keep in touch

I would llike to share with you a good piece of news. I was having real problems with the VNS causing my left ear to have severe pressure like going down in a plane and an aching tooth. Obviously the doctor knew little about the side effects and said i will just have to get used to it. Well, she is a new one in town because the trained one with experience left. Anyway I contacted Cyberonics and they had someone get in touch with the doctor the next day. They had remmended some changes in the settings. The doctor called me at work that day and had me come in. The adjustments are really helping.

I found out that day that the doctor has only one other patient with a VNS and it was installed within about the last 6 months.

Glad to hear that things are much better now and the new settings are helping with the pressure and pain. Hopefully the new doc learned something from this too.

Kevin,

First of all, how is your shoulder? From the sounds of your last post, you really have been through a lot and I hope it is doing better.

I live in a small village (not even big enough to rate as a town!) and I would love to take your information to the local Fire Department after my VNS implantation if you have it completed. I had not seen a post in a while, so was unsure of where you were on this document. Or were you sent overseas as you indicated might be possible?

Thanks for all your hard work! :im_033:

i am still here and will be staying in the us. unfortunately my conditions have worsened due to another accident and a progression of a genetic disorder. i will be undergoing several surgeries over the next year or 2 which will slow my progress on the detailed course which i am writing in a complete powerpoint program with audio so it can be sent directly to emergency services and they can just plug-and-play it for a good educational tool without having to have an instructor come in to present it. the plus side is that i now have time to work on it since my condition dosent allow me to work anymore.
i promise that i havent forgotten any of you and will do my best to get this info out there, and the very first copy of this course is headed straight to birdbomb.
this course will not be copyrighted in anyway so it will be available to anyone that wants it free of charge. also next month i will be presenting this course to a paramedic course here in southern NM, so we can get a start on this rolling ball, which is much bigger than i though.

hope everyone is well
kevin r harkness

Thank you Kevin.

I am so sorry your condition is worsening and I do hope your surgeries can bring you relief. It is also very generous of you to have your presention as an open source and I am sure many will benifit from it.

Please check your pm.

Thanks for the update Kevin. Best wishes for your surgeries.

thanks everyone. im not writing this class for any profit, just wanna get the info out

Thanks Kevin for the update. I am so sorry to hear about your shoulder. Take care of yourself and hope you are feeling better very soon.

:im_033:

Thank you for your time and compassion.

Labrat :im_033: ; bee ;

I agree with the fellow who sent the message regarding medicalert. My necklace actually lists Vagus Nerve Stimulator, Epilepsy, Hypertension and Glaucoma. If only the doctors would learn to use the information it would be nice.

You said it!!!!!! Read!

I was just curious if there had been a paper released on VNS to give to local EMS/ Firefighters/ police ect.

Hi SezLuv,

As far as I know this has not been done yet but I can tell you what I did personally.

I live in a smaller community where the paramedics respond directly to 911 calls for medical assistance. I copied the VNS manual in it's entirety and made an appointment to meet with the head of the local ambulance paramedics. After we discussed this, I showed her my incisions, how to use the magnet, etc. I also told her that I had directions posted on the front of my refrigerator with directions on use of the magnet, my VNS implantation serial number, my doctors, the medications I take, where the medications are kept, my medic alert number (since I have my medical history listed with them) and my emergency contacts. Since I live alone I also told them where they could find a key which I have hidden in case they receive a call for help.

Even though I have not needed their assistance to date, I have received some phone calls from her and her co-workers as she used the VNS manual to give a training on VNS to the EMS staff. Some have actually come to the house to ask a few questions of me personally, which I do not mind in the least as it shows they are wanting to make sure they know how to respond in case of an emergency.

By the way, since you get two magnets with VNS, I used one to hold the VNS sheet onto the fridge, so they don't have to search for it.

I also wear a Medic Alert bracelet stating "Vagus Nerve Stimulator - No MRI - No Diathermy".

I think you will find that any information you relay to your local emergency response team will be appreciated and received from you with gratitude, especially if your husband is the first in your area or town who is being implanted with VNS.

I hope this has given you some ideas.

:im_033:

Kevin,

Wow what a great idea you had to have all of that information on the refrigerator held with the VNS magnet! I've been wondering how to let others know about this if I was not able to respond. Do you carry this information on you, too? I am worried at times about being in an accident or something happening to me and they won't know what not to do! I'll copy my information tonight-thanks for the great insight and ideas. I love the idea of the power point presentation and meeting with the EMS folks, too. You are quite resourceful. What is the medic alert bracelet you have? Jean

I carry a small agenda book with me at all times.

I have listed the following information

• Current medications and dosage
• Drug allergies
• Surgical history
• VNS information
• Do's and Don'ts
• Contacts ie., family, doctors

I do the same thing BB. I have my VNS settings on my medication list.

We're a couple of smart cookies! ;)