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harkEMS
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« on: March 21, 2006, 07:39:16 PM »

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
« Last Edit: March 21, 2006, 08:09:06 PM by birdbomb » Logged
Petunia
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« Reply #1 on: March 22, 2006, 04:17:57 AM »

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!  
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Complex Partical seizures since age 12. Right lobectomy in 1992, VNS Feb. 2003, removed Feb. 2004. I'll just keep trying.
harpie_aem
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« Reply #2 on: June 02, 2006, 01:34:13 PM »

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
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harkEMS
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« Reply #3 on: June 25, 2006, 01:20:49 AM »

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

 
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Birdbomb
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« Reply #4 on: June 25, 2006, 03:59:04 AM »

Would you be willing to post it here for members to download?Send me a pm and we'll discuss it :)  
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
kwgreulich
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« Reply #5 on: July 14, 2006, 10:19:07 AM »

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.
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KW Greulich
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« Reply #6 on: July 14, 2006, 10:52:07 AM »

: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:  
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howdydave
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« Reply #7 on: July 14, 2006, 01:19:39 PM »

Quote
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
Howdy Amy!

Send 'em to my site:

The VNS From A Patient's Point Of View
http://www.howdydave.com/vns.html
 
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Dave
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« Reply #8 on: July 15, 2006, 07:07:15 AM »

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
« Last Edit: July 15, 2006, 07:18:08 AM by birdbomb » Logged

38 y/o female with pseudo seziers as per new neuro-who the heck knows (my seizure issue still on debate 10 years later), BiPolar, May Turner Syndrome, newly high blood pressure, DVT, PE's and an unexplainable blood clot disorder.
FORMER VNS implant patient
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labrat
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« Reply #9 on: July 15, 2006, 07:48:52 AM »

: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:  
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nitarita34
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« Reply #10 on: July 16, 2006, 04:32:18 AM »

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
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38 y/o female with pseudo seziers as per new neuro-who the heck knows (my seizure issue still on debate 10 years later), BiPolar, May Turner Syndrome, newly high blood pressure, DVT, PE's and an unexplainable blood clot disorder.
FORMER VNS implant patient
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labrat
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« Reply #11 on: July 16, 2006, 07:24:03 AM »

: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:
« Last Edit: July 16, 2006, 07:50:00 AM by birdbomb » Logged

harkEMS
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« Reply #12 on: July 26, 2006, 11:17:02 AM »

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
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Birdbomb
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« Reply #13 on: July 26, 2006, 12:27:05 PM »

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!:
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
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« Reply #14 on: July 27, 2006, 05:58:56 AM »

Quote
I found a website that offers bracelets with anything you want engraved on them. I put:
« Last Edit: July 27, 2006, 06:18:45 AM by howdydave » Logged

Dave
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« Reply #15 on: July 27, 2006, 01:21:42 PM »

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
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howdydave
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« Reply #16 on: July 28, 2006, 04:53:06 AM »

Howdy Cathy!

WELCOME !
 
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Dave
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« Reply #17 on: July 28, 2006, 05:47:01 AM »

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.
« Last Edit: July 28, 2006, 11:26:30 AM by birdbomb » Logged

"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
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« Reply #18 on: July 28, 2006, 09:15:55 AM »

: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 :  
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bee bopp
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« Reply #19 on: October 09, 2006, 06:56:39 AM »

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
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« Reply #20 on: October 09, 2006, 07:15:05 AM »

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:  
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Rocking4Epilepsy
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« Reply #21 on: January 05, 2007, 05:11:04 PM »

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

Thanks for the great info
« Last Edit: January 05, 2007, 05:11:43 PM by Rocking4Epilepsy » Logged
harkEMS
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« Reply #22 on: February 05, 2007, 07:17:52 PM »

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
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kwgreulich
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« Reply #23 on: February 13, 2007, 04:36:04 AM »

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.
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KW Greulich
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« Reply #24 on: February 14, 2007, 01:31:55 PM »

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.
 
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gel61820
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« Reply #25 on: July 16, 2007, 03:40:00 PM »

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:
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"Do not go where the path may lead, go instead where there is no path and leave a trail." Ralph Waldo Emerson

VNS implanted July 2007 for Epilepsy.  Activated August 2007.  No success, so VNS was turned off in August 2008 and COMPLETELY removed (including coils) on Nov 25, 2008.
harkEMS
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« Reply #26 on: August 23, 2007, 07:51:25 AM »

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
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Birdbomb
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« Reply #27 on: August 23, 2007, 08:02:32 AM »

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.




 
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
Bernard
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« Reply #28 on: August 23, 2007, 08:05:00 AM »

Thanks for the update Kevin.  Best wishes for your surgeries.
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harkEMS
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« Reply #29 on: August 23, 2007, 08:25:00 AM »

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