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gel61820
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« Reply #30 on: August 23, 2007, 10:22:13 AM »

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:
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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.
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« Reply #31 on: August 23, 2007, 11:03:03 AM »

Thank you for your time and compassion.

Labrat   :im_033:  ; bee ;  
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« Reply #32 on: November 01, 2007, 04:50:50 AM »

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.
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KW Greulich
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« Reply #33 on: November 01, 2007, 06:39:42 AM »

You said it!!!!!! Read!
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SezLuv
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« Reply #34 on: March 10, 2008, 12:03:19 PM »

I was just curious if there had been a paper released on VNS to give to local EMS/ Firefighters/ police ect.  
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gel61820
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« Reply #35 on: March 10, 2008, 03:07:07 PM »

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:
« Last Edit: March 10, 2008, 03:08:54 PM by gel61820 » Logged

"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.
JeanBean
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« Reply #36 on: March 12, 2008, 11:25:48 AM »

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
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Birdbomb
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« Reply #37 on: March 12, 2008, 12:02:14 PM »

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
[/color]
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
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Electrodes are in me for LIFE!
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« Reply #38 on: March 12, 2008, 12:06:28 PM »

I do the same thing BB. I have my VNS settings on my medication list.
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Birdbomb
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« Reply #39 on: March 12, 2008, 12:13:04 PM »

We're a couple of smart cookies!   ;)

« Last Edit: March 12, 2008, 12:13:20 PM 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!
gel61820
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« Reply #40 on: March 13, 2008, 12:12:52 AM »

Good morning JeanBean!  :coffee:

I keep the same list that I have on my fridge in my glove box and my wallet.  I travel for my work and am away from home almost 50% of the time, so I have a chance of things happening more away from home than at home.

The medic alert bracelet I have is stainless steel with the logo on the front, then the toll-free number, my account number and "Vagus Nerve Stimulator, No MRI, No Diathermy" on the reverse.  I also have this in a small gold pendant on a necklace that just looks like a medallion unless you are familiar with the logo.  They have many different styles of jewelry, some are watches, some are jewelled, etc. I personally chose Medic Alert because (1) I travel so much, I needed something that was not local but national; (2) I wanted to go with a company that I could keep my medical records up to date as far as medications, doctors names and numbers, hospital admissions, personal emergency contacts, etc.; (3) and it wasn't that expensive, all of this information is kept by them and available in case of an emergency 24/7 for less than $40 the first year, then I believe $25 each year there after.  There are other companies out there that offer similar benefits, this was just the one that fit me personally the best.

Hope you are able to get things organized and feel more secure knowing you have your "duckies in a row" in case of an emergency.

 :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.
Tincatt
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« Reply #41 on: April 02, 2008, 07:00:28 AM »

I got some plastic lamination cards from an office supply place and made up a card I   wear on a llanyard around my neck. Besides contact information on who to call. It says that Ihave epilepsy and that I have an Electronic nerve Stimulator. It tells them to use the magnet I wear  on my right right wrist and to  run it over my upper left chest area.

Even though I live in a pretty big city very few of our paramedics have ever heard of the VNS. I had a seizure about a week and a half ago in a store and the store called the paramedics. Only one of the paramedics  had ever heard of the VNS. She had been told by someone who has one.
 When a new firestation opened near me and had an open house I went there and introduced myself to a few  of the firefighter/paramedics who work there. I told them about the VNS and showed them how the magnet works. I asked them to please pass on and spread the word about the VNS.
 That little "code" that is on the VNS magnets seems useless to me, it would be better if it had a red cross and said "epilepsy" or something.
« Last Edit: April 02, 2008, 07:02:12 AM by Tincatt » Logged
kwgreulich
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« Reply #42 on: April 03, 2008, 03:52:21 AM »

It has amazed me, the lack of knowledge of some the people in medicine. I live in a town of about 15,000 population, but we have a fairly large hospital because it is the only one in a 100 mile radius. Also, right next to the hospital is a college where there is training in nursing and several medical specialties including dentristry, MRI, etc.

Last time I was in emergency I was not really with it and could not let them know what my medicines were, let alone the dosages. I showed them my Medic Alert neclace and they had no idea what that was, how to contact them or let them know who I was. Even after Medic Alert sent them my records, the hospital did not call my wife. At least I was able to tell them not to give me an MRI because of the VNS. Of course none of them had heard what a VNS was.
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KW Greulich
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« Reply #43 on: April 15, 2008, 04:51:48 AM »

Hark, I would like some information on what you have put together so far.  As a former firefighter/EMT for 12 years I know that the fire/ems community here could benefit from this.  Until being diagnosed with epilepsy myself and having to give up my dream job I had never heard of VNS before.

I am still active in EMS, though not in a responder role at this time.  This could be something that could be incorporated into recertification training or updates for local (maybe even national EMS requirements).
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kwgreulich
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« Reply #44 on: April 16, 2008, 09:54:58 AM »

Kevin;

I know something like this can sure be a big help. Here were I live the town is about 15,000 population, but at least we have the only hospital right here. The next closest one is ~90 miles to the west and if you were to go north south or east there is none within 150 miles of where i live. To give you an idea of the knowledge, last time i was in emergency, they asked about my medicine. I was in a state that i could not recall. I did point out my medic alert necklace and said they knew. Well, no one in emergency even knew what medic alert was or how to get in touch. Furthermore, they wanted to give me an MRI because with my seizure i had hit my head and had a brain concusion. They had not heard of a Vagus Nerve Stimulator. Fortunately, i was at least able to say I could not have the MRI. Even after getting the info from medic alert, the hospital didn't bother to call my wife. After I was starting to think straight I gave the fellow who brought me into the hospital my cell phone and asked him to call her with the number programmed on it.

kwgreulich
« Last Edit: April 16, 2008, 09:58:30 AM by kwgreulich » Logged

KW Greulich
harkEMS
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« Reply #45 on: May 08, 2008, 02:18:06 AM »

hey everyone, im back for a bit and still workin on it, cyberonics has completely bailed on me with the help on my CE class, but im pushing ahead without them. jelliot give me an e-mail if you would and we can brainstorm, i will be working on a grant to actually start traveling around and teaching the classes myself, and it sounds like we need to get together on this.

my e-mail is harknessems@hotmail.com   just put VNS in the subject so it wont go to the trash box.
if birdbomb dosent mind me putting my e-mail up anyone can e-mail with questions or help so i can help you get some info for your local ems service. and no im not charging anything for the classes im going to teach, not in this for a profit, we VNSers need the help and im tryin to get it for us from the inside.
hope to hear from you soon
kevin r harkness



[edited for e-mail goodness!]
« Last Edit: May 08, 2008, 04:14:29 AM by Birdbomb » Logged
Birdbomb
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« Reply #46 on: May 08, 2008, 04:09:22 AM »

Kevin, as a rule I do not allow email addresses to be posted but will make an exception in this case.  You are attemping to educate the emergency medical system of how to respond to VNS, this in itself is utterly fantastic not to mention generous and caring!  This is a great undertaking and if anyone deserves recognition, it's you!

[div align=center]THANK YOU, sir, thank you!



Individuals such as yourself, are an asset to any message board.[/div]  


I do not understand why Cyberonics would ignore such a needed service.  Those with Epilepsy often end up in the ER due to seizure activity and those with depression can fall back into the abyss of depression and end up there too, not to mention, accidents, or illness. EMS NEEDS this information just like they do for diabetics or heart conditions, or drug abuse.  Cyberonics fails miserably in the customer/patient service department.
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VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
harkEMS
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« Reply #47 on: May 25, 2008, 12:06:28 PM »

hey everyone, I know this project is taking forever and ever, and ever....... you get the the point, anyway most of the other CE courses that I have written and presented usually only take a month or 2 from start to presentation. this project however (as you know) is taking forever. and here is why: I refuse to present a class of anykind without a physician with experience in the area of the course making sure all of the information is factually correct. in the case of the VNS I refuse to present a course on the VNS system, even though I do not try to explain any of the more complicated aspects of the system, without the people at cyberonics giving written approval and examining the course material for complete factual correctness before presenting or distributing the course material. the course has been presented on 5 different instances to make sure the course " flows properly " which I always do. The entire course has been sent to Cyberonics twice already and both times it has been " misplaced". I am now going to submit it through a friend of mine that is a physician to see how that goes.
I really want all this info out there for us, but I have to do everything legally and approved through the manufacturer or they can come after me. I hope you all can understand, you cant possibly understand the frustration this is causing, but since im 100% disabled and mostly retired, I have a little time to be a thorn in their side LOL. I will be working in a small town about an hour south of houston, and I just happen to have a map to cyberonics Blvd LOL it's time to be a pain in the but in person

will keep you all updated
joker
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Birdbomb
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« Reply #48 on: May 25, 2008, 12:51:39 PM »

Wow,  you think they'd jump at the chance to have someone educate EMS on their OWN time.  I find it very unsetteling that they are putting you off in this manner.  From these actions, alone it looks quite suspicious.

I cannot tell you how much your efforts are appreciated.  From someone who has had to deal with uninformed EMS first hand, I can vouch that this information and training NEEDS to be presented to EMS people.  You sir, are to be commended not only for your efforts but your tenacity!



« Last Edit: May 25, 2008, 12:52:16 PM 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 #49 on: May 27, 2008, 02:16:14 AM »

thanks bird, really no thanks are necessary, this is what i love doing, and it dang sure needs to be done. for some reason the only training course material they want distributed is what they already provide, which is the tech manual for the surgeon and the avenues pamphlet for the layman patient and family ( which isnt worth a darn anyway) I have tried and tried to explain the fact that the EMS community takes training alot differently than a neurosurgeon, we wont go into the specifics of an EMS convention but your probably better off not knowing anyway LOL. it's just gonna take a lot more bugging them. i will keep tryin.

joker
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« Reply #50 on: May 28, 2008, 01:58:32 AM »

harkEMS,
Hopefully you got me message.  Here at work I am unable to see any pictures or the email that you provided.  I would be greatful to assist you with putting together a trianing program for EMS, and possibly even for emergency room staff.  I was talking with an ER phyiscian the other day and he didnt even know about VNS, and this was at our area's major trauma center!!!  Think of the damage that could be done in the ER by a doctor or nurse who didnt know anything about them, especially if the patient comes in and is unconscious or not alert enough to advise about the VNS implant.  Hopefully we can contact each other and do that brainstorming! : lighten :  
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Bernard
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« Reply #51 on: May 28, 2008, 04:40:41 AM »

Quote
... and I just happen to have a map to cyberonics Blvd LOL it's time to be a pain in the but in person ...
I know several good restaurants in the area if you need any suggestions.
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Tincatt
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« Reply #52 on: May 01, 2010, 10:01:14 AM »

Besides the plastic laminated card I made (and the magnet of course:) I also wear a watch that says epilepsy my name and a contact number. I also wear a medical alert braclet that contains info. inside it. I even have a key tag that says "epilepsy," still they  do not GET IT. huh The only thing good about having all this stuff is bye the time people look at it chances are I will have come out of the seizure on my own. rolleyes
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« Reply #53 on: May 02, 2010, 12:28:12 PM »

 Smiley HI Tincatt!

Hope things are going great!  Nice to hear from you!

Geesh-that's a lot of documentation that gets overlooked!

Take care!
Cool
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VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

ALL MY POSTINGS ON THE VNS MESSAGE BOARD ARE NON-TRANSFERABLE
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« Reply #54 on: May 30, 2011, 03:19:08 AM »

  Hello every one.    I notice there have been no recent posts to this suject. Did a study guide or course become available to EMS/First Respnoders? Did Cyberonics ever come through with any information which could be useful regarding the course or the study guide? I sure would like to know what happened here. Thanks. Take care of your selves. Suspender

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« Reply #55 on: June 05, 2011, 10:12:48 PM »

 Cheesy HI suspender!

Last I knew from my local EMS, no, they have no clue what the heck VNS is and what to do stuff.  Pretty dang sad I say that the education isn't out there for these people.  Take care.

Cool
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VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

ALL MY POSTINGS ON THE VNS MESSAGE BOARD ARE NON-TRANSFERABLE
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« Reply #56 on: March 06, 2012, 05:45:34 AM »

          Hello Dispatch

     I've been gone for awhile. I needed to decide about my vns and me. For the time we are one.

     While I was gone I did manage to give a speech to the Kiwanis Club in my home town about
 
     epilepsy. There were two fire fighters there during my presentation. They were very interested in the

     large poster that explained in detail what to do for an epilepsy patient who requires CPR. This

 poster was supplied by the Epilepsy Foundation. The VNS is not mentionedon the poster. So I went to

     to great length to explain what a vns is , I even lifted up my shirt, so the fire fighters could see

     the site. The fire fighters had no knowledge of the vns or how to treat a patient who had one. It

      turned out to be a very educational day for all of us. Being proactive is easier that knee jerk reactive

     although not as much fun.

 
                   
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« Reply #57 on: May 17, 2012, 01:05:18 AM »

 Hi Guys,  Smiley
 Oh, I see what you mean!   I had a seizure at a Store nearby & they called the EMS.  ugh!
 It took some time but when I recovered I showed them my medical card & magnet with med. ID dog-tags on them & they said, "Uh, what's that?  We don't know what the VNS implant is."    Shocked
  I can't fault them, my local ER & Dr.'s don't either??!   huh   Shocked
  They kinda put the cart before the horse in using the VNS's before educating the professionals!   They were totally out for money I'm convinced!
  Where do I find info. to e-mail/educate my Local EMS Units so others won't be in "my" shoes or worse?!
  I already e-mailed the Epilepsy Found.   You can't write cyberonics Inc. unless you want an implant, after that they're done with you it seems.
  I guess it's up to us, "I" can't even get in to see my Neuro now-a-days...he acts too busy & like his time is more important.    angry
  How have you all been?
  Hugs,
  Rosie  from  Harrisburg, Pa
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« Reply #58 on: June 04, 2012, 07:47:08 PM »

 Smiley HI You Guys!

Ah Rosie, nice to hear from you on here my new Friend!  THNX for joining us on Facebook too!  No surprise the EMS crew didn't know what the heck VNS is.  That still is so common and still very scarey to think they could not know a darn thing & what can happen to the patient with VNS when they put an electrical jolt into their chest.  My new Neuro didn't realize my scars were from implant/explant.  Had I been unable to tell him, he would've guessed I've had cardiac/vascular surgery, or possibly stabbed in the chest ICK!

Suspender!  Great to hear from you!  Ah, you are at one with your VNS!  Good attitude!  Double kiddos for reaching out to educate those EMS folks!  It's a shame Cyberonics didn't put more $$ and effort (and they still don't) to educate these people.  I think TSA at airports have more knowledge about VNS than EMS personnel...pretty sad.  Glad you are OK!!

Take care!
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"I reckon it's again my turn to win some or learn some..." Jason Mraz

ALL MY POSTINGS ON THE VNS MESSAGE BOARD ARE NON-TRANSFERABLE
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« Reply #59 on: June 06, 2012, 05:08:25 AM »

  Hi Dispatch,
  Thanx, I'm fine & now wear a necklace, keychain, & wallet card as compared to just a wallet card (like before), 'cause no..that didn't work. 
   And I had the Local Epilepsy Foundation call our County EMS w/info. & offer classes.
   
   Yea, I haven't even been able to reach Cyberonics Inc. since this Vns Implant?   Like they only care before?!   
   I was told it would never be able to come out but would sure be interested in that surgery?!
   I hate it & it's never helped, in fact...with my hormonal situation (Menopause), I've gotten worse & no one will help or wants to hear it 'cause they think the VNS should've helped?!
   I went from CP & Atonic (Drop attack) seizures to Tonic Clonics after the Implant (1/5/10).  I'm losing my Aura's a blacking out alot now too where I'm having seizures I don't know about.
   I'm very PHOTOSENSITIVE & HEAT SENSITIVE which trigger seizures (around hormonal times).   Hot water, over-heated, flickering fluorescent lights (wal-mart), candle light, hot days over 100 degrees, car lights at night, sunlight on water, etc.
   I think Cyberonics & their little implant are a joke.  My Dr. said, "We'll be able to get you off some of your meds. & you won't feel as tired & groggy".
   I'm on 16 pills a day AND a VNS that doesn't work?!
   Hugs,
   Rosie
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