Congential heart defect and pacer placement surgery

Hello there. First of all I would like to thank everyone for there imput. I am a mom of a 16 year old that is getting ready to have to undergo surgery. I have a few questions and I am not sure if anyone has dealt with these issues but I hope we can get some direction. Our daughter is 16. Very active. In high school dance/ band / and taking a heavy load at school.  She has a congential heart defect  (apparently rare) and she is now in need of a pacer. She was born with no superior vena cavalry, with a giant coronary sinus with an alnamous venus return. Apparently the way they uaually.would put a pacer in they can't due to the lack of the svc. They also say they can't go in on opposite side due to the giant.coronary sinus and problem with lead dislodge mentioned. ANYONE ever deal with this? She is passing out almost daily with up to 10 second heart pauses. She is hardly ever able to do much of anything anymore. WE meet with the cardiologists and a secondary cardiologist in January. Any questions we should ask? Any adult have a pacer located in belly? Any complications to look for?

 

Thanks again for your assistance 

 

4 Comments

Alternate Pacer Locations

by Grateful Heart - 2016-12-15 22:26:33

Donb (not to be confused with donr) has had pacemakers implanted all over.  You can send him a private message through this site.  Just go up to "members only" on this page and click on Private Messages then put donb in the search box and you can send him a message.

I'm sure he will be very helpful. 

Let us know how everything goes.

Grateful Heart

yep, talk to Don!

by Tracey_E - 2016-12-16 10:23:46

Abdominal placements are rare in adults but I've never once heard of one where the patient wasn't happy with it. Most are like Don, have had both chest and abdominal and say abdominal is more comfortable, even preferable.

As for being paced so young, it's rare but certainly not unheard of. Number one thing is to make sure her doctors are aware of her lifestyle. Some pacers are better suited to activity than others so make sure they know how active she is. 

I'm congenital also, have had a pacer since 1994. Being paced has never once kept me from doing something I wanted to do. I'm 50 now, healthy and active. I have two daughters in college (both band kids!), both born after I got the pacer. I hike, ski, lift weights, kayak.. whatever I want. No one looks at me and sees a heart patient.  I see the pacer as more a tool to feeling good than something scary or negative. I know how good I feel with it, I remember how I felt without it. I don't ever want to go back. 

I was 5 when diagnosed, but about your daughter's age the first time I was told I needed a pacer. At the time, they didn't do them in kids unless it was life threatening so I didn't get mine until I was older. Let me tell you, I was petrified! The doctors talked to my parents, not so much to me. No one explained things to me and it built up in my head. If someone had simply sat down with me and explained how they work, how the surgery would go, how I would feel after, then I wouldn't have spent all those years terrified. I'm glad it's not years for your daughter but I'm sure she's still plenty scared. Knowledge can take away a lot of the fear. Encourage her to write down her questions, take a written list to appointments (I do that to this day, nothing like the doc walking in to give you amnesia and forget all your questions!). If no one has shown her a pacer, ask them to let her hold one so she can see how small they are. Get them to show her the computer they use to interrogate it and explain to her how it will feel (for me, it's like when an elevator comes to a stop) and the kinds of things it records and is capable of doing. 

Last thing, your daughter may be online just like you, doing some research. The internet is good and bad- we can research and find places like this which is a good thing, but there are also a lot of horror stories floating around out there. Keep an eye on her and what she's googling. For every scary story, there are a thousand happy endings that didn't go online and write about it. For every reputable site, there are sketchy ones. Check out St Jude's website. They have really wonderful animations that show how the heart beats, the most common problems that lead to pacing, how the pacer works. 

Good luck!!! 

2nd Opion

by BillH - 2016-12-16 13:08:10

I see that you are going to see a 2nd cardiologist. I don't know what kind you are seeing.

But with congenital difference I would look for an pediatric EP and/or a cardiac surgeon that deals with congenital defects.

 

Placement

by Pacemum - 2016-12-17 08:50:35

It would appear from you post that there may be no access to the ventricle and that the pacemaker leads may be sewn to the bottom of the heart instead of passing through the vein.   This is possibly a question that you may wish to ask.

I would also ask about different positions to place the pacemaker box and what restrictions each would involve.   They may place in abdomen, tuck under the arm or offer another alternative. It will depend on the types of activities your daughter wishes to continue and her heart anatomy.

Hope all goes well.

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Yesterday I moved to a new place in my mind and realized how bad I felt 'before' and the difference my pacemaker has made.