Questions about having pacemaker long-term, leads, malignant vasovagal syndrome

Hello all,

Brand new to this forum. I'm currently 33 years old, and had my initial transplant when I was 10. I had the battery replaced at 18, and after dealing with depression and neglect (and lack of insurance), I'm trying to get things back on track.

I have a pacemaker to treat malignant vasovagal syndrome, which was leading to high grade av block, very unpredictable fainting and increasingly seizures. It started when I was under a year old, and continued til I was about 2, during which doctors were puzzled and assumed it was some type of epilepsy or brain disorder that I would grow out of. from 2 to 8 I was fine, but then I started fainting again. A cardiologist was finally able to diagnose me by doing a tilt table test.

I am due (overdue) for a new battery, found a good doctor, and am exploring options, but wanted to do more research. I'm concerned about having leads long term, in the event that these leads which I've had for 23 years now, are no longer good. I know they can add more leads without extracting the old ones, but are there long terms risks/complications from that? What happens when I'm older and need new leads again?

I'm also interested in what new pacer I should get. I don't want one of the new Medtronics that hooks up to network wirelessly, the whole idea really freaks me out. Does anyone know what type of pacemaker would be suited for me?


6 Comments

questions

by Tracey_E - 2018-11-09 10:16:06

Everyone is different with leads. With some it's better to add new, with others they prefer to extract and start fresh. My original leads are from 1994. One is still working. The other was replaced in 2011. There was room and removing mine will be complicated so we opted to leave it alone for now and add a new one. There isn't really a risk in leaving them there when they aren't working, they just sit there, capped off and taking up space.

Removal may or may not be risky. It's come a long way and is not the risk it used to be, but it's still a specialized procedure that needs to be done by someone very experience which may mean travel. I chose to wait to extract, hoping that if I put it off long enough that my next set of leads will be my last. I'm 52, so quite a bit older than you. To answer your question, when you run out of room, they extract or move to the other side. Leads have gotten thinner and tougher over the years. Extraction techniques continue to get better. Leadless technology is out there, but it's not an option for us at this time. So, who knows where technology will be when your next set of leads needs replaced. Based on today's technology, the options would be move to the other side or extract again. When I was first diagnosed (age 5, 1970), pacers were single lead, worked at a set rate, were huge and didn't last more than a year or two. 

Most of them come with remote monitoring. You may be able to decline it but I can tell you from personal experience, I got over my aversion to it quickly. I HATED the idea when they first gave it to me. It only has to be within 10 feet of where I sleep so I wrapped it in a towel and put it under the bed. My check ins happen automatically so I went from quarterly check ups to once a year. And they time I went to the ER, I was able to send a download before I left which really sped things up when I got there. Another time something odd was going on so I sent a download, emailed my NP, and got a response without ever having to go in. All it does is send a report of what the pacer has done since the last check. It can't be reprogrammed or anything like that, it just sends info. So, you could say not, or simply refuse to plug it in, but it's really not that bad, and can be quite useful. 

As for what type, that's a question for your doctor. They are only as good as the programming so you want one your doctor knows inside and out. There aren't really that many to choose from and all of them are good so it's not like there are bad ones to avoid. There are some differences in rate response but that likely doesnt apply to you. Other than that, they all work about the same. 

Have they interrogated? They will test the leads more thoroughly when they do the replacement but they should be able to tell if they are working well based on the interrogation. 

Where is your PM?????

by donr - 2018-11-12 09:15:10

Implanted at age ten -  is it in the chest near the collar bone or in the abdominal cavity?  makes a bitg diffeerence in lead placement.. 

If it is near the collar bone, you need to have a seriious conversation w/ your EP about the future & the need to have the current leads removed.  It will not get any easier with more rime.  There are many faCTORS INVOLVED IN YOUR DECISION.

dONR

Thanks for your replies so far...

by MVSweary - 2018-11-12 11:09:40

In response to Robin1, yes I understand this is a board not made up of medical experts, but I'm hoping to find any information I can from as many sources. I'm mostly looking to hear if anyone has a condition similar to mine, or has had a pacemaker from an early age that can share their experience and give any advice how to navigate decisions. And to be clear, my doctor's words are getting top priority.

Tracey_E, thank you for the in depth response, that gives me an idea of at least a similar situation concerning long-term pacing (I'm finding it difficult to find information/experiences of it). The battery in my pacemaker is dead, so they were not able to get a proper interrogation and determine how the leads are doing. It was irresponsible of me to let it get to that point, but as I said, I was going through a period of depression and rather serious self-neglect. I also had a lot of anxiety about going back in to surgery, because the last time I had my battery replaced, I was conscious for a portion of the surgery, which was rather traumatic.

In response to donr, my pacemaker is in my chest by my collar bone. The doctor said that the leads that are already in there he would probably cap and leave in. He said extraction would be very difficult for those because my body has essentially grew around them, and that he doesn't foresee any problems in keeping them in and adding extra leads. I trust his opinion, but do you or anybody else have more information concerning this? I'm concerned about down the line, does it increase risk of infection or complication? He advised against extraction, but does it make more sense to extract now to avoid having to do it later?

 

more

by Tracey_E - 2018-11-13 09:44:20

First of all, this time talk to the anesthesiologist in advance and tell them you are nervous, that you had a bad experience last time. They can give you something to take the night before and load you up on the good stuff as soon as they get the iv in once you get to the hospital. They can also do conscious sedation which means you are awake but have no memories of the surgery. I had this the last two times, good stuff! 

Maybe they'll open you up, test the leads and find out they are just fine! You never know, that would be the easiest solution. Have they done xrays or ultrasound to check for fractures in the leads? If they look good on xray, that's an indication they may be just fine. 

Many ep's do not do extractions or they don't do a lot. It's highly specialized and you want someone who does at least 100 per year. I would get a second opinion for sure, but get it from someone who does a lot of extractions, someone who sees other patients like you. I found an adult congenital clinic through the Adult Congential Heart Association. I adored my old cardiologist, saw him for 20 years and still highly recommend him, but he didn 't have other patients like me so a lot of the time it felt like he was making it up as he went along. Which he probably was, lol, not his fault because I'm a rare case. But the older I got, the less I was ok with that. 

Then I had a consult with the adult congenital ep. Night and day! He sees half kids, half adults like me. His thoughts on long term pacing and leads were very different. The tests he does annually and the things he tracks are very different and much more insightful. Including ... drum roll please... xrays and ultrasound to monitor the condition of the leads to watch for issues before they show up in the pacing reports. My old doc never did anything like that, but that makes sense because he didn't have other patients like me with really old leads.

So, that's what I would recommend for you, even if it means traveling. It is well worth it to see someone who has hundreds of patients with old leads, who have been paced for a long time and will continue to be paced for a very long time, who has done complicated extractions. That's your best bet for making an educated decision on what you should do next, for minimizing your long term risks. https://www.achaheart.org/your-heart/clinic-directory/

There is a very minimal infection risk leaving them in. There is also an infection risk with the surgery to take them out. Basically having foreign objects in us is always going to carry a (very very) small infection risk so 6 of one, half dozen of the other. IMO, infection isn't a reason to make a decision. It should be more about maximizing the life of your leads and having space in the veins to keep on pacing the rest of your life. 

good idea!

by MVSweary - 2018-11-13 12:37:08

I will definitely bring up the idea of having x-rays and/or an ultrasound done to check the leads with my cardiologist! Even if it does not give a conclusive answer as to the functioning of the leads, we will at least have more of an idea what we're walking in to.

My cardiologist flat out said that if it came to removing leads, he would advise going to someone else who specializes in it. Luckily, I'm close to New York City, so I would imagine it would be easier to find a doctor with that experience without too much travel. His opinion was that the leads in there, if they don't work now or at some point in the future, should stay in because they would be difficult to extract, but I suppose if I get new leads that in time would need extraction, the newer ones would be easier to extract (because I got them in adulthood)? Assuming that's the case, that would be years down the line anyways.

referral

by Tracey_E - 2018-11-13 15:37:29

Ask your cardiologist where he'd refer you. Also check out Cornel and Columbia, they both have large adult congenital practices so odds are pretty high they have an excellent extraction team. You can ask how many they do a year, how long they've been doing them, and what percentage ended up in open heart surgery. 

https://www.achaheart.org/your-heart/clinic-directory/clinic-listings/

Yes, they will probably be difficult to extract, but odds are you are going to outlive a new set of leads so that will leave you with two sets that don't work, one of which is even harder to extract. Usually, the younger the patient, the more likely they are to extract. OTOH, technology for getting them out gets better all the time. That's why I chose to wait, hoping what would be complicated now will be less so by the time I need it, and if that day is far enough down the road that my next set is my last. 

Getting them in adulthood doesn't really matter (I don't think!) it's how long they've been there and how much scar tissue has built up. The lasers they use go mm by mm, separating the lead from the scar tissue. 

 

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I am 100% pacemaker dependant and have been all my life. I try not to think about how a little metal box keeps me alive - it would drive me crazy. So I lead a very active life.