1% pacing only - removal of PM ?

What a dilemma

by Lavender - 2022-12-28 09:49:12

It would be nice if there was a definite course of action given to you by a trusted pediatric specialist.  As a parent, having to seek out opinions from nonprofessionals, you must be in a quandry. 
 

I wonder if having your child wear a longer term heart monitor would help. Perhaps that gathering of more information can help with the decision. 
 

I have third degree heart block that led to fainting episodes and a pacemaker. I was told it's progressive and doesn't heal. But I am older. 
 

If risks are higher to remove it, I would leave well enough alone. Many folks have had pacemakers since they were children and live good lives. 

1% pacing

by Penguin - 2022-12-28 09:50:16

Hi, 

There is a charity here in the UK which specialises in syncope disorders called Stars.  The founder had a child who suffered syncope attacks.  https://heartrhythmalliance.org/stars/uk/

They joined up with the Arrythmia Alliance some years ago and they may be an excellent source of advice for you as they will have other parents as members.  

Best wishes

1% pacing is not insignificant

by Gemita - 2022-12-28 10:35:53

You have a perfectly good device to protect your little girl.  A pacemaker was clearly indicated and may still be necessary. Even less than 1% pacing may still be reason to keep the pacemaker if your little girl continues to have significant pausing at night.  There is no way of knowing if and when the pacemaker will be required.  I wouldn’t risk removing the device and leads and triggering any adverse responses from your little girl’s heart which is something that could well happen too.  There was a risk in implanting and there is certainly going to be a risk in explanting.

If by the time of battery replacement you find that your little girl has had no further episodes of fainting or long pauses at night, then you may wish to re-visit this decision, but for the moment, in my opinion, it might be best to leave well alone?  

The 1%

by Lavender - 2022-12-28 10:43:38

As Gemita says, it may be significant even at one percent. 
 

I initially fainted for only a brief moment and the first couple times was only out for seconds, even conscious before I hit the ground. Over six months, the fainting was increasing to once or twice a month. The last two fainting spells were near deadly as I actually had near death experiences both times. The last event, I was wearing a heart monitor. I was out for 33 seconds and my boyfriend inadvertently restarted my heart by punching me in the back thinking I was choking when he was actually hearing a death rattle sound. 
 

I have a rare arrhythmia called ventricular standstill. It's hard to catch on a monitor. All EKGS were normal as was the stress test and two echocardiograms. When you need a pacemaker, you need it. It can be unpredictable. 

Thank you all

by Slowdive - 2022-12-28 13:19:49

Thank you all for your feedback! It helps me to read all your advice. 🙂

There will be the yearly EP appointment in a few weeks and as usual I will ask the doc for his advice. Last time his comment was to wait until the battery comes to an end and then see how the situation has developed in the meantime.

1%

by Tracey_E - 2022-12-29 10:19:02

She definitely does not have 3rd degree block. If she did she'd be pacing nearly every beat. Infection can cause that so it's possible she healed.

The pacer kicking in for 11 seconds at a time is going to statistically show up as <1%. However, that 11 seconds is the difference between passing out and not. 

I assume her pacer is abdominal for now? When she's grown enough to move it to the chest would be the time to make a decision. Leads run to the abdomen aren't used later anyway. If they decided to not replace it, be very very sure she doesn't have those short eposides of it kicking in for just a few seconds.