3 more days...

Welp... After 10 years with my first pacemaker and set of leads (Type 2 Second-degree AV block) its time for Round Two! With two months of battery life left and 1 fully fractured lead and the other only half working January 7th is the day! Going in for lead extraction, new leads, and new device. During my first surgery in 2009 the device was placed Subpectoral (most likely due to my young age at the time) But that has now been shown to possibly have caused complications (such as my leads fracturing). So this one will be placed above the muscle. I'll have the noticeable pacemaker bump this time around. Hopefully I'll get used to it quick!


8 Comments

subpectoral placement

by Tracey_E - 2019-01-04 10:01:52

Looking at your age, I'm no doctor but it sounds like your leads broke because you grew a lot since your placement. I'm on my 5th pacer, all of them  have been subpec or submammary (even deeper and more out of the way than subpectoral). I've had doctors who didn't want to deal with the deeper placement (that's why it was moved from submammary to subpec) but I've never had anyone tell me it would affect my lead life. Just the opposite, actually, they are more protected. That's been my experience. I still have one working lead from 1994, the other was replaced in 2011 so average lead life. If you want it deeper, if you don't want a lump, tell them to use the same pocket. If you don't care then feel free to ignore my rambling! But if you like it subpectoral, lots of people have it subpectoral and don't have problems with the leads. You are still really young, and I would imagine really active. Sports are much easier when it's buried. 

Thanks Tracey!

by Brettmalec - 2019-01-04 10:11:53

Thanks for your reply tracey! I figured they broke faster because of me growing as well. My doctor figured this too. I appreciate your rambling! He decided he wanted to go with the placement above the muscle because hes had better results this way. I'll keep what you said in mind! When my device was originally placed it was much lower but as i grew it now rides along my collar bone. I also have a spaghetti mess of leads in there because they left waaay too much (for me to grow) but they overestimated how much I'd grow apparently. Not sure if that could have contributed to the fracturing as well.

outgrowing leads

by Tracey_E - 2019-01-04 11:15:55

Kids tend to go through a lot more leads than adults. They leave lots of slack so they can lengthen as needed but scar tissue complicates things. Can you tell from the xrays if any areas got kinked in all the extra slack? That's how insulation can rupture and the lead go bad. They told me that was the weak spot in mine that went bad. You should be about done growing now so hopefully these leads are going to last you a very long time! Good luck. Check back in, let us know how it goes. 

I've always said my xray looks like a bowl of spaghetti. When it was submammary, they put it in from the side but they put the leads in the standard place on the upper chest then tunneled them down to the box. Then I got the new lead that they put in a different vein, they capped off bad one and left it in. The tunneling drove my last surgeon crazy so he moved the box up higher and put it under the muscle next to where they ran the leads. I also have connectors because my old leads don't attach directly to the newer box. It all glows pretty in the xrays lol. There's a picture in the gallery somewhere. It makes me laugh. 

Leads

by Brettmalec - 2019-01-04 13:52:03

Lol wow! You've got lots of spaghetti tracey! 😂 

My Cardiac electrophysiologist says one of the leads most likely fractued up by my collar bone, ill have to see if i can find a recent x-ray.

 

Interesting

by Pacemum - 2019-01-05 04:49:39

Following your individual story.

The decision to move the placement may also be down to the size of the pacemaker battery unit itself.  At 7 you have had one of the smallest pacemakers implanted.  Are they giving you a slightly larger pacemaker with an increased battery life?

For information purposes my daughter has had a pacemaker since being a few months old and had her second pacemaker placed under her muscle a week before her 8th birthday together with second set of leads implanted  She is now 18 and has had those leads for over 10 years now with no issues. She is now on her third pacemaker battery which is still the smallest size.  Her third pacemaker itself is now at end of service and due to be replaced next week.  Initially they were talking about getting a bigger adult size pacemaker with increased battery life.  However, it looks as though they will be just replacing the pacemaker with another small one if the leads are alright during testing.  This decision is probably due to ease as they can fit it into the existing pocket and the existing leads may be good for the next five and a half years (which is the current life her pacemaker batteries are lasting) but not for the twelve to fifteen years a larger pacemaker battery would offer.  As she is 100% paced in the ventricles her battery usage is high which explains the number of pacemakers.

As Tracey has explained your lead issues are probably due to growth.  They can only guess how much or how little someone will grow.

Hope everything goes well for the lead extraction and replacement.

Pacemum

by Brettmalec - 2019-01-05 15:43:52

Thanks for your reply pacemum! Interestingly enough I actually have an adult pacemaker. This probably contributed to my 10 year battery life. 

I hope your daughter is well, thanks for sharing your thoughts!

four leads

by dwelch - 2019-01-06 03:55:01

I have been at this over 30 years.  And one of my active leads is 30+ years old, one is lets say 25 years old and my third a couple.  My inactive lead is 30+ years old and broken (capped).  My first one went in at 19, so I dont think growth was my problem.  My like third or fourth doctor said it was probaly because of how they routed the leads when I started and that they dont do it quite that way anymore.  Pretty sure they broke it during the repacement.  The doc said "oops" and I as awake (mostly) and tried to say "what do you mean oops!"  but was out of it enough that I couldnt get the words to my mouth, could only think them...At that time removal was according to him not possible, these days, certainly with visiting this site regularly it sounds like it is a common thing.  

I went from a two lead to bi-ventrical, something you are likely to deal with at some point in your life, hopefully like me not until 30+ years into it.  Nothing to worry about now (nor then).  You, like us, will be a pro at this. 

Note there are some parents here whose children are about to get devices, and perhaps some kids of those parents that are about to get devices.  Your experience starting when you did (as well as your folks) might be very helpful to those folks if you are willing to look for those posts and contact them.   Some are concerned about what life with a pacer is like for a child.

Again I started at 19 (found pre-teen watched it for years before getting my first device) and didnt have the issues that Tracey had, living off of early/original leads for decades, same pocket, have moved a few times so different docs and surgeons, not all using the same scar so I have a few different scars, it is what it is, no big deal.

10 years is a good run, my first two were supposed to last longer but only made it 7 years each, the third went a little further not sure if it was 10 though.  Fourth we pulled midway to put the bi-ventrical in, hopefully fifth will be a 10+ but you never know.  

As you move into adulthood you will need to be responsible for things.  I recommend you ask the tech every time you get an interrogation for your copy of the printout, and ask the doc or ask the folks at this site what the things mean.  The doc works for you, not the other way around.  

Let us know how it went...Look forward to hearing from you.

 

dwelch

by Brettmalec - 2019-01-09 01:48:31

Thanks for your comment dwelch! I just got out of the hospital yesterday and I'm doing well! What you said seems pretty accurate! My EP did say that it'll be likely in the future that I'll probably need to be switched to a Bi-ventricle pacing setup as well! The lead extraction was unsuccessful because of my types of leads and the way they were placed, They kept breaking whenever they tried to extract them and it got to the point where it was too risky and they were worried about puncturing the heart or vein if they tried any harder to get them out. My EP had attempted the lead extraction because he wanted to try to give me a "fresh start" with how young I am. He said most lead extraction specialists wouldn't have even tried removing my leads. After the surgery, he found out that only about 20 cases around the world with my types of leads that extraction had been successful. So I guess I just got unlucky there, but they shouldn't cause any problems in the future is the hope! Even though I have the Azure Mri safe pacemaker and leads I still can't get any MRI's because of the old capped leads lol! hopefully I won't be needing one anytime soon anyway 😂

And I'd be happy to contact those parents who are worried about their kids getting pacemakers and sharing my experience! I'll have to look through some posts and see what I find!

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Member Quotes

I've seen many posts about people being concerned about exercise after having a device so thought I would let you know that yesterday I raced my first marathon since having my pacemaker fitted in fall 2004.