Misdiagnosed

In 2011 I was diagnosed with Brugada syndrome when I was 19 so a ICD was placed..long story short I was misdiagnosed and do not have anything wrong other than SVT that was fixed with an ablation in 2018. I just found out I now need to get my pacemaker & leads removed completely. Has anyone gone through a lead extraction? I am 31 years old & extremely nervous for this surgery as it is high risk and I have two little ones that need me so I'm quite nervous. 
 

 

thanks 


7 Comments

CURIOUS

by docklock - 2023-05-16 20:25:23

I would think PM and leads extraction would be a rare operation.  Am curious how you're getting the insurance to pay for this?? Please keep us posted as this sounds like new territory.  

Lead extraction

by AgentX86 - 2023-05-16 21:45:58

A lead extraction is just the first half of a lead replacement.  It's not a nothing but it's done every day (leads don't last forever) and doesn't have nearly the risk that it had just a few years ago.  However, it is still highly avdisable to have this done by someone who specializes in extractions.

Don't worry about it.  It's great news and go with it.

Extraction

by Tracey_E - 2023-05-17 08:30:55

Ten or 15 years ago it was high risk. Now it's usually considered serious but not particularly high risk when done by an experienced surgeon. Have they told you you are high risk? Just make sure the surgeon does a lot of extractions and you should be fine! Sometimes this means not using your current doctor, or even traveling. The number of experienced surgeons has increased exponentially in the last decade, and the lasers they use to do the removal have come a long way, so it's become more routine. 

General observation

by piglet22 - 2023-05-17 08:53:18

Applies to anything.

If a designer designs something the he/she might have to fix sometime in the future, themselves, it's usually a better design.

With a pacemaker, getting the leads in is one thing, extracting another. Hopefully, part of the design brief is that extracting is as important as inserting.

Mis-diagnosis is one of those things, it happens. It's a mistake, humans are only humans. let's hope that lessons are learnt.

Good luck and don't worry.

Lead extraction

by Julros - 2023-05-17 19:27:33

I had my LV lead extracted and replaced last September. I was given the option to leave it and cap it, but that meant I could never have another MRI. I had known scarring in my subclavian vein andI had a CT prior to the procedure,My extraction was done by an EP who has done many, and teaches others how to. There was a cardiothoracic surgeon standing by just in case there were any complications. They planned to use a laser, but it wasn't necessary as they were able to free the lead with a cutting catheter. Everything went smooth, and I was discharged the same evening. 

Lead Extraction

by The Rose - 2023-05-17 20:08:34

There are several sugeons who specialize in pacer and lead extractions.

Find one in your area or nearby, with lots of experience.  Do not settle for anyone who's not successfully completed many.  Don't be discouraged if they state they want to keep it in just in case.  Also, do tons of reasearch and read medical papers. 

I'm in the same process:  I'm pacing at less than 1% and I've not had a good pacer experience. 

Prayers your extraction is successful and you live a lovely long life.

back up plans

by Tracey_E - 2023-05-17 22:14:08

They always have a cardiothoracic surgeon on standby in case something goes wrong. My ep told me that they have a new laser that cauterizes immediately if there is a bleed so they are less likely to need the surgeon. (at least I think I'm remembering it correctly! cauterizing might not be the right word but their new doohickey stops bleeds so they are less likely to need the cardiothoracic surgeon)

You can ask their stats. How many they've done, how many times they've needed the cardiothoracic surgeon, survival rate. My ep and his team (he's head of ep at the adult congenital and pediatric clinic in a large childrens hospital) in all the years they've been doing extractions, they've needed the surgeon twice, and both patients recovered fully.

You know you're wired when...

Your pacemaker receives radio frequencies.

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