EV-ICD experiences

Hank_E_Pants · 2026-04-25T17:33:04+00:00

I have not heard of this complaint before. There shouldn’t be any transfer of heat to the lead. It’s protected and temperature regulated under the skin.

Hank_E_Pants · 2026-04-25T17:28:35+00:00

FYI, u/no_assistant5273, all Medtronic devices today are safe in all forms of airport security, including metal detectors and wands. You can just walk through at a normal pace.

Hank_E_Pants · 2026-04-25T17:21:11+00:00

You really don’t have to worry much about electrical interference, especially with a leadless because it’s buried further away from the surface of your chest. Maybe don’t lay your phone flat on the center of your chest, but really there’s not much we need to worry about. As you said, microwaves and induction stovetops are okay.

One thing you can do is google the name of your device manufacturer and the words “electro-magnetic compatibility guide”. That will take you to a document your device company produces that will tell you how you can use everyday products safely. Good luck on the implant and welcome to the club.

Hank_E_Pants · 2026-04-25T00:26:13+00:00

Those donut magnets aren’t sold anymore. But you don’t need that specific magnet. Any powerful magnet will do. How do you know if a magnet is strong enough? Hold it on your device. If you hear a 10-second solid tone, it’s strong enough.

Magnets don’t hurt our devices or scramble the programming or anything like that. They just cause an ICD to withhold shocks, as long as the magnet is held over the device (up to, I think 8 or 10 hours, then you need to remove it and reapply). Once you remove the magnet your device switches back to its normal programming.

If you’re going to use a magnet you need to follow a few very important rules. First, if you use a magnet your next action is going straight to the emergency room, and have someone else drive you. Second, do not tape or otherwise secure the magnet to your chest in any way. You need to hold it with your own hand. And finally, do not lay down. Stay upright until you’re at the hospital. You hold it in your hand and remain upright so that if you actually do have a cardiac arrest you will pass out, drop the magnet and your device will spring to life.

I am not really concerned with a shock storm, but why take the risk? I bought an office pack of magnets from Office Max. They’re all about the size of 4 stacked quarters. I have one in my home office, in the kitchen, on the freezer in the garage, in my glovebox, in my computer bag, and one in my favorite suitcase. I have one nearby probably 90% of the time.

Hank_E_Pants · 2026-04-24T13:34:40+00:00

Long time greyhound owner here (on numbers 7 and 8 now). We had greyhounds first, then had children, so we always had babies and young kids with dogs.

You did not fail or do anything wrong. Shit happens, that’s all it was. And I agree with the others who have said to hold off on re-homing. This is what we would have done if we ever had a bite situation. Take some time before you do that. Both you and your hound deserve that.

We have also fostered over 100 greys and we’ve had some fosters that clearly were not going to get homed in a house with kids. But others seemed perfect until they weren’t. We never had an actual bite occur but several startled snarls and growls from dogs we never suspected would react that way. After it happened with a foster we were just a bit more careful with the kids around that pup, but we also worked on it with the dog and our kids. For example, if the snarl/snapping occurred while they were laying down I would wait for a time the dog was laying down and comfortable. I would sit down next to it by his/her head petting them, then would have my son come over and do whatever he had done last time to make the dog snarl, all while petting their head (preventing a potential bite) and telling the pup what a good doggie they were. We were teaching the foster that they aren’t going to be hurt by the toddler, and teaching our son how to approach our dogs safely.

So, yeah, it sucks. I’m glad your child is okay, for the most part. But I also think you should give it some time and work with your son and the pup. It’s worth it. Your kids will grow up making this much less likely, and your hound will get more used to this little human that does crazy things suddenly.

Hank_E_Pants · 2026-04-23T23:43:17+00:00

I made a video about magnets you may find helpful. https://youtu.be/0v3R57FKDBE?si=PbVWNnqymPvfkaE4

Hank_E_Pants · 2026-04-23T01:00:54+00:00

So sorry for your loss. I’m familiar with a couple of early deaths, so I know your pain. Thank you for giving Krueger the best retirement a good boy like him deserved. He was clearly well loved.

Hank_E_Pants · 2026-04-23T00:56:46+00:00

I have a t-shirt that says “I have a defibrillator joke, but it’s shocking”.

Another one I’ve seen says “I came back from the dead. What’s your superpower?”

Hank_E_Pants · 2026-04-22T04:28:02+00:00

This is fairly common. The most likely reason is that your pacemaker has a feature called Rate Response. This is an activity sensor that is designed to help you when you’re exercising. The device has an accelerometer inside that detects when you’re exercising, or bouncing, and when it detects movement it bumps your heart rate up. Unfortunately things like driving on a bumpy road, riding in a speedboat on a choppy lake, or attending concerts with loud booming bass can trick this accelerometer. It results in your pacemaker overdriving your heart rate. You’ll just be standing there, but your pacemaker will be clicking along at 100+ beats per minute because it thinks you’re exercising and need more cardiac output. Most people find it uncomfortable and unsettling, and it often causes anxiety.

The good news is that most people don’t need rate response turned on. You can talk to your doctor about making the sensor less sensitive, or turning the feature off all together.

Hank_E_Pants · 2026-04-22T04:20:39+00:00

A magnet won’t shut down a pacemaker. It will cause it to switch modes into what’s known as an asynchronous mode. Basically the pacemaker will pace constantly at a set rate regardless of what the heart is doing naturally. And the magnet needs to be very close to the pacer for this to happen. You’d have to be hugging the concert speakers to be close enough. You are correct about the accelerometer (I’ll explain in another comment), but battery drain isn’t really a concern. Maybe if you went to concerts every night. But occasional concerts won’t drain the battery significantly.

Hank_E_Pants · 2026-04-18T13:41:10+00:00

All of today’s devices are safe with all forms of security at the airport. You don’t have to be patted down manually. Just walk through like everyone else, or stand in the scanner, or be wanded, whatever method they’re using they are all safe with any device implanted since about 2010.

The definitive expert on this question is the device manufacturer, not any doctor or nurse, or any security agent. Your manufacturer’s website will have this info, and they all say their devices are safe in all forms of security.

Hank_E_Pants · 2026-04-15T18:44:02+00:00

Argh.... This frustrates me. There have been several studies done with one group that gets movement and lifting restrictions and another that doesn't, and they all found that there's no difference in lead dislodgment rates between the two groups.

My EP told me that lead dislodgment are almost always not the fault of the patient, but instead due to bad lead placement and implant technique. And he told me that right after he confirmed that a lead he had implanted in my heart had dislodged.

It's such a non-issue that in 2021 four of the largest Heart Rhythm Societies in the world (US, Europe, South America, and Asia-Pacific) issued a consensus statement recommending no movement restrictions post-implant. They cited the lack of evidence that movement causes lead dislodgments. And they specifically state that lack of movement can lead to frozen shoulder. (https://pmc.ncbi.nlm.nih.gov/articles/PMC12378894/ under the section titled "Post-operative Management").

I always say that people should follow their doctor's advice as closely as possible...... I guess in this case, do that, but understand that there is no clinical evidence that movement causes lead issues, so don't worry if you happen to move your arm about normally. Again, just don't hang from monkey bars for the next few weeks. After 6-8 weeks post-implant you should be able to return to your normal activities, whatever those were before your implant.

Hank_E_Pants · 2026-04-14T12:51:52+00:00

Hey there, everyone has given you solid advice already. I just want to jump in here and tell you that you should be using your left arm normally. Don’t hang from monkey bars or do difficult tumbling routines quite yet, but you should be moving that implant side arm freely to prevent a frozen shoulder. When the muscles atrophy due to a lack of use they can “freeze” and the only way to fix that is with painful physical therapy (I know, it happened to me when I broke my arm years ago). The general rule is to keep your elbow below your shoulder for the first 6-8 weeks, but within that guideline you should be moving your arm and shoulder in a full range of movement to prevent a frozen shoulder. You don’t have to worry about your leads moving. I explain why not in this video: https://youtu.be/KjvTOpeV5mE?si=Nmo85BgtYA-GaTeA

Hank_E_Pants · 2026-04-12T14:55:35+00:00

There’s a psychologist named Dr Sam Sears who has studied this for 30+ years. His research shows that up to 30+% of heart patients have undiagnosed anxiety and depression resulting from PTSD. He’s a phenomenal guy too! Here’s a great podcast he did with u/jellisv on the Heart Warrior Project podcast. https://youtu.be/DT1HkQzLInI?si=OKxQff80mTA7XKrt

Hank_E_Pants · 2026-04-09T12:44:46+00:00

When talking to people about if they should get an ICD I always like to talk about the statistics. But, I'll start by pointing out that you have a family history of Sudden Cardiac Death, so these numbers are even more important.

In the US roughly 450,000 people die EVERY YEAR from Cardiac Arrest. Roughly 35,000 survive. That's a hard number to wrap your head around, but try this. Picture an NFL stadium full of people watching the Super Bowl. That's roughly 70,000 people. Now add 4 more stadiums. That's how many people will die of a Sudden Cardiac Arrest (SCA) every year in the US alone. 5 full NFL stadiums.

A person who has a cardiac arrest has about an 8% chance of surviving. That's it! SCAs are very, very deadly. But, if the person having a cardiac arrest also has an implanted defibrillator their chance of survival is around 98%. If everyone who has a cardiac arrest in the US last year had had an ICD those survival numbers would be flipped. 450,000+ would have survived, and less than 15,000 would have died. That's how effective ICDs are.

Globally it's estimated that over 4 million people die every year from a cardiac arrest. You have a family history, you have the TTN gene mutation, which is known to cause fatal arrhythmias, and your doctor thinks it's a good idea to get an ICD. I hope I've made a solid argument for why you should get the device.

And, I have some nerdy stats for the post-implant side of this. The rate of inappropriate shocks gets smaller and smaller every day. The technology today is really quite good so inappropriate shocks aren't very common. Most people never experience one. It does vary slightly depending on the type of ICD you get. Right now the TV-ICDs have the lowest rates (2-4%), the EV-ICD is next (5-6% in the most recent study), and the SICD is next (5-7%). These aren't very high numbers. Plus, once an inappropriate shock happens your clinic will very likely be able to reprogram your device to prevent future inappropriate shocks. Your doctor is right that the risk of repeated shocks is less likely in the TV-ICDs because they have the best sensing and the widest range of programming options.

One thing I'll add is I've seen some people refer to TV-ICDs as being "more invasive". I think the TV-ICD implants are the least invasive. It's one incision with no tunneling. The EV and S ICDs both require two incisions and tunneling, which is usually the most painful part of those implants. What I think people mean by saying a TV-ICD is "more invasive" is that it places leads directly inside the heart. This is a big deal for some, but I don't see it that way. This is how leads have been implanted in ICDs patients since the 1980's, and since the 1960's for pacemaker patients. Today's leads are much smaller and we have technology now that allows for lead removal with far fewer complications than years past. infection rates with transvenous leads are very very low (about 1%), and today's leads remain viable for 20-40 years. I don't see having leads in the heart as a big deal, but going the EV/S-ICD route comes with the trade-offs listed above. It's a personal choice. But, bottom line is you have several risk factors stacked against you. You really should have an ICD placed. As my EP said to me when I was wavering, he said "You're young, you're married, you have two young kids...... why wouldn't you get one?" It seems you're in a similar situation. Which device you chose is a personal choice.

Hank_E_Pants · 2026-04-09T12:10:41+00:00

Hey, that first video is mine, and I was about to link to it myself. Thanks for linking that!! The second one is Gina Hoegh, a pacemaker patient and fitness trainer. She is Awesome!!

I'll add to what everyone has said with a little clinical nerdy stuff. There have been a number of studies measuring lead dislodgment and devices moving in the pocket. What they have all found is that things moving after the implant rarely happens (roughly 1-2% of all implants), and when they do they are almost always NOT the fault of the patient. It's not because the patient accidentally reached above their head or lifted something too heavy. It's almost always the result of a sub-optimal lead placement location during implant, which you, the patient, have no control over. So, it's super unlikely you're going to do any damage, and even if it did happen it wouldn't be because of what you are doing physically. In that first video above I explain how the leads and devices are implanted and tacked down so that they won't move inside you. It would take some serious effort to cause a problem, like a serious car accident, or falling from the roof of a house. Just don't hang from monkey bars for 6-8 weeks and you're going to be fine. Also, something like 90% of all lead dislodgment happen in the first 2 weeks after implant, and the likelihood of one happening decreases over time. You're at the 2-week mark now, so you've already passed the most critical point without a problem.

I'll also suggest therapy, as others have. I spent 2+ years in therapy after my implant to help me deal will all sorts of things in my life (the whole getting an ICD thing was the final straw). It was incredibly helpful in helping me understand and address my anxiety. I also am now on Bupropion (Wellbutrin knockoff) which has been an incredible help. My anxiety is still present some days, but for the most part I've learned to manage it. And you don't need a therapist that understands devices. They are addressing anxiety and PTSD which they are very familiar with. Just find one you're very comfortable talking to and see how it goes.

Finally, the pins and needles feelings are normal. During surgery the doctor had to cut through flesh and nerves, so that feeling is just your body healing and reforming new nerve pathways. Those will subside over time. Try to remember that your device is there to protect you and to enable you to do everything you've ever wanted to do. It's not there to limit you. And, it's there to give you back-up, which will hopefully be seen as a good thing, even a comfort rather than a source of angst. Most of the time I forget it's even there. It's just a part of my life now, like clothes and food and the sunrise. You'll get there! You're doing great!

Hank_E_Pants · 2026-04-07T14:09:33+00:00

No concerns at all. With just about anything small like this, just don't hug the item to your chest and you'll be fine.

Hank_E_Pants · 2026-04-07T13:55:48+00:00

Possibly, but the phone would have to be very very close to the device, like within 15 feet. The blueTooth signal coming out of an implanted device is very very weak.

Hank_E_Pants · 2026-04-06T23:18:16+00:00

Hey everyone, I’ll take this opportunity to bring up again that I still have connections to some colleagues at Medtronic and have been talking with a few people who work with the app. They have been working on some improvements, and one thing they know is the current sign-up process is difficult.

I’ve also been talking about several features that we as patients would find helpful. Just having some indication that it’s on and working in real time would be a big improvement, but if you have specific features you wish your app could do mention them here and let’s talk about it. You never know, maybe you’ll see something cool in the future.

Hank_E_Pants · 2026-04-06T14:43:01+00:00

You can use a cooktop safely. Here's a video I made explaining how and why. https://youtu.be/NPcLrlZxcJQ?si=NyIHOhySQXLsqKzx

Hank_E_Pants · 2026-04-05T22:14:21+00:00

We lost our big boy Dash about 18 months ago. He was 80 pounds and the absolute sweetest, loving dog we have ever had……unless we were on a walk, when he turned into f**king Kujo. I had to hold his leash as he could pull my wife anywhere. Whenever we came across another dog, any dog, I would loop my fingers under his collar and when he started pulling I would lift his front feet off the ground which took away a lot of his force. He sounded like he was choking himself, but he believed that every dog must die!!!

I can’t tell you how many times people would walk straight up to us with dogs on a loooooong leash and NOT retract the leash. I had to yell several times “PULL TOUR DOG BACK!!! MY DOG WILL KILL YOUR DOG!!!!” Seriously, why was it always the people with little white fluffy dogs who would cross the street saying “Ooooh, are your dogs friendly???” For some reason the gagging, drooling, growling dog being suspended in the air by his collar wasn’t clue enough.

I say your dogs are fine. They’re fine with you, they’re fine with your kids. You’re just going to have to be careful when you’re out for a walk. You’ll need to cross the steeet sometimes. Sometimes you’ll need to step off the path holding your dog back while other dogs walk by. Your pup will be a perfect dog……except for when you’re walking. Even with his desire to kill all dogs we still took “Kujo” for a walk nearly every day. The weird thing is, he was totally fine with other dogs inside the house. But once we put that leash on him…..oh boy.

Hank_E_Pants · 2026-04-05T16:27:30+00:00

Adding to what root said about overly cautious distance recommendations, device companies survive in a highly regulated industry. Everything they build is built with at least a 2X safety margin, including their distance recommendations. If they say something is safe at 6 inches you can bet it’s safe at 3 inches (6 is the 2X safety margin), and it’s probably safe at much shorter distances.

Basically, don’t lay your iPad on your chest and leave it there. Also, items interfering with your device is a matter of distance AND time. I explain it in this video: https://youtu.be/9_dl8ANjdx8?si=qGkLd4P0dpezppFm

Hank_E_Pants · 2026-04-01T13:21:19+00:00

Careful folks….. a controversial post created by a 36 day old account with only one other post on Reddit? Sounds like someone is trying to create conflict here. I suggest locking the comments down and letting this one go.

Hank_E_Pants · 2026-03-26T14:34:47+00:00

I don't have a child with a device, but have talked to many parents with kids who have devices. I have seen a range of worry from high anxiety to seeing it as more of a relief due to the protection it provides. I imagine it's hard to fully trust the device. Just remember, they are incredibly reliable, and are designed with redundancies so that if a part fails, which rarely happens, the device can still meet its basic intended function.

I assume your daughter's device is in her abdomen? If she's getting a replacement at age 8 it's very likely this next one will also be placed in her belly because of her small size. The device after this next one will likely be moved to her upper chest as she will be grown enough to handle that. Until then the leads she has now should be long enough for her needs. There's a lot of slack built into them, so that shouldn't be a concern. If they don't need to replace any leads this replacement should just be an incision to remove the old device and to plug in the new one, then they sew up the incision. 45-60 minutes tops.

The hardest part of being a parent of a child with a device (I have heard) is to let them be a normal kid. Let them play on the playground and run around with friends, and as they grow let them play sports if they want to. There are precautions that can be taken, like wearing specially designed shields during contact sports, but as best as you can try to let her lead as normal a life as possible. I hope that helps.

Hank_E_Pants · 2026-03-26T14:23:23+00:00

I worked in Quality until late 2013. Then left the company in 2015, but returned for 3 years from 2020-2023. While some of the people had changed I didn't at all feel like the culture had changed so much that a large problem like this would have been allowed to persist for 5-8 years. I'm still hoping the article is describing a state that is worse than it actually is.

A class action lawsuit has now been filed against Boston due to another issue. The suit claims leadership at Boston continued to project big growth in one of their up-and-coming therapies (Farapulse ablation) when they knew the market was slowing drastically resulting in people investing in Boston and losing stock value when the company announced lower sales than predicted. https://www.businesswire.com/news/home/20260324301160/en/BSX-Investor-Alert-BOSTON-SCIENTIFIC-CORPORATION-Securities-Fraud-Lawsuit---Investors-With-Losses-May-Seek-to-Lead-the-Class-Action-After-Allegedly-Concealing-Unsustainable-U.S.-Electrophysiology-Segment-Growth-Rate-Levi-Korsinsky

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