20 years with a pacemaker (had it since i'm 6)

Hi everyone !

I´m 20 years old and have a pacemaker since i was 6. This last week i was told that my lead where malfunctioning (they're kinda old). My doctor decided to abandon the leads and the generator because it's not worth the risk and lead extraction is a high risk procedure that can end with open heart surgery. She also decided to implant new lead and a new pacemaker on the other side. Here are my concerns:

-Does lead abandonment can cause future complications ? Does some of you experienced that ?

-It's possible, not counting on future advancements of modern medicine, that i'll use a pacemaker for life. Does someone has the same experience. Is there a limit to how many procedure i can take ?

 

Thanks for the answers! 

  


6 Comments

In a similar situation

by barnet38 - 2019-11-15 19:28:52

Hi!

I received my pacemaker at age 17 due to congenital complete heart block.  That was 21 years ago!  I had an issue with one of my leads about 1.5 years ago, and the techs were able to keep it going by changing it to unipolar mode.  Everything has been working well, but I send remote transmissions in every month to make sure the impedance level isn't rising.

In the 1.5 years since the lead malfunctioned, my EP retired and I have been transferred to a new doctor. The new doctor would like to place new leads and extract the old leads, if possible. It's my first understanding that this procedure has become much safer due to advancements in the technologies that are used in laser extraction.  My old EP always said that he would just cap the leads off when the time came for new leads.  My new EP is much younger and is the extraction expert at a large teaching hospital.

I'm interested in seeing what others on this forum have to say.

I would get a second opinion

by Jo S - 2019-11-15 19:42:10

I would get a second opinion and ask about the risks and benefits.  Are you at a large teaching hospital or academic medical center?  If not, I would definitely try to get to one and get a second opinion.  My PM is pretty new so I haven't had those discussions with my EP, but I know their website talks about specializing in complex lead extraction and the fact they have an open heart surgery team on call just in case.  I'm sure that's true at other large teaching hospitals.  Obviously, there are risks, but I don't think lead extraction is uncommon for experienced EPs.  I know I have heard there are more concerns doing an MRI for someone with abandoned leads, even if they are MRI safe.



 

Leads and MRI

by AgentX86 - 2019-11-15 23:14:30

Getting an MRI is enough of a PITA without the complication of abandoned leads. I think I'd want them removed because you never know when you might need an MRI.  I chasing around that circle now.  One hospital just decided they didn't want any part of a PM and just passed the buck.  I'm now trying to get the hospital that's going to do the MRI to coordinate with my cardiologist and PM tech to get all the information.  It's a mess. Abandoned leads may make it impossible.

That said, the above advice is right on.  Only allow an EP who has done hundreds or thousands of lead extractions anywhere close to your leads.  Technology has made it safer but it's still a big deal.

Lead Removal Suggested Absolutely

by FirstDuely - 2019-11-16 23:03:54

I've had 5 leads removed and replaced and now have thicker, 3 layered MRI Safe leads.  Two leads were removed when the doctor decided to move the pacer from left to right side of my chest and last year I had the pacer placed in the muscle.  The leads were too delicate and cracked and started to leak those tiny, little electrons. Batteries don't last long doing that.

My first pacer was a single lead Medtronic, not dual paced placed due to SSS.  That did not work for me.  About that time 33 years ago the Siemans Corporation in Sylmar, CA had developed the first dual chamber pacers in the world.  I got the first one!!!  Talk about being a data point in a grand experiment.  I'm still around folks and plan on riding my road bicycle when I'm 100.

I've had 10 pacers in my life since I was 36.  I'm now almost 70.  I ride and exercise and travel and enjoy every day of my lucky life with my wife and family.  

The lead extractions were done by Dr. Raymond Schaerf at Providence St. Joseph's Hospital in Burbank, CA.  He was one of the first 6 doctors to start doing extractions.  He's also a chest cutter just in case.  Google search him.  He also now travels all over teaching the technique he has been doing.  My first extraction took 6.5 hours.  The last just 1.5 hours with pacer replaced each time.  My pacer is a St. Jude Medical PM2272 currently.

My recommendation is to get the pacer removed and extract the old leads.  Period.

Hope this helps you in some way or another.  Then go about the planet and enjoy life!!!

Gary N.  in Hemet, CA

another opijnion

by Tracey_E - 2019-11-17 09:00:59

Ditto the others, I would get another opinion. Talk to someone who specializes in extraction. There are even surgeons out there who specialize in high risk extraction. I have had one abandoned lead for 10 years now, no issues. I got my first in 1994. I'm out of room in the vein and have already had the discussion with my ep what will happen when one of my current leads goes bad. We will extract, not move to the other side. We want to save the other side for when I can no longer have more on the left side. My ep does a lot of extractions, but there is another ep across town at another hospital that does more that are higher risk so that's where he plans to send me.

Age of the leads doesn't necessarily make us higher risk. It's the scar tissue around the leads, position of the leads, and oddly enough, previous heart procedures. If we've had other heart procedures, scar tissue makes the heart tougher so the fact that I've never had anything but pacer surgeries makes extraction more tricky. 

They can extract and start fresh enough times to get us through a lifetime. Newer leads are thinner and tougher than the old ones so they last longer and don't take up as much space. If for some reason we could no longer have leads in the vein, they can do epicardial. Also, leadless technology is out there. We don't qualify for it right now (it's single chamber pacing and doesn't work with traditional leads) however who knows what they'll come up with next. There will always be something they can do! 

depends on you

by dwelch - 2019-11-17 18:23:18

I am going to agree with the masses that lead extraction isnt what it used to be.  It is not risk free of course, but again not like it used to be.   I have had pacemakers for 32 years, I have leads older than you I have a broken and capped lead that is as old as you.  I went from a two lead pacer to a three lead pacer recently so I have four leads on one side of which three are used.  Im a big guy so they all happened to fit.  

You are in the category of Tracey_E and others that responded, starting young (you have most people at this site beat) and having a lifetime of pacers. (okay well as you point out there may be some procedure/meds in the future that can fix things and some of us may no longer need pacemakers) So there is the notion of preserving the other side.

But

It may depend on your situation and dependency.  Can your body/heart survive a lengthy surgery without a pacer?  The way the tech is going with lead removals becoming not as big of a deal as they used to be, the preserving the other side may become not as important as it used to be.  If for example they were to move to the other side and put a new pacer in that may free up the first side to have lead/device extraction.  leaving that side free for the future.  This is pretty much true for all of us.  switching back and forth between sides.  Hard to say from the relatively small sample of folks that reply here that have had many devices, I know in my case that I have a 32 year old lead a 25 year old lead still in operation, and when the latest lead was put in there has been no further talk of choosing to extract vs change to the other side.  there was talk of tunneling over to the other side but no talk of completely moving, had the lead not fit then the choice was remove the broken one or run one down the other side and across the chest so that the two in use could remain in use.

The general rule for medicine in america in general is if you can survive keep going until you get to the big city.  Be it an emergency or not.  Now you need to learn/know your condition and how life threatening or not lead failure is and what urgency you need to put on this.  I know you are a 20 year pacemaker veteran but you are also a young adult you need to assert yourself and take charge of this no matter how long you have had this doc.  Have it explained to you in more detail why.  Your doc may not know or have nearby a good lead removal surgeon and that is not uncommon, supossedly the guy that puts devices in for the practice I go to is the guy you want in these parts, other posters who have had leads removed have mentioned their surgeon.  I have had a number of doctors over the years some managed the device and did the surgery, my current one does not do the surgeries, she manages the device, someone else does the surgeries.  It may be the case that you can ask for the surgery to be done in some other city, a big city with a surgeon with a good reputation, and retain your current doc for the maintenance of the device. 

Or you may choose to see another doctor.  Seeing another doctor is like going out on interviews when you are a little miffed with your current job but not ready to quit and be unemployed.  You may find you like this other doctor just as well, or just enough to now have to pick.  Do you stick with the one that has kept you going this far or at least however long you have had her?  Or are you ready to walk away from that and jump into something new based on one visit, put your life in the hands of a stranger that talked well of themselves or their practice, but you have no real idea what life with them will be like?   it is a very tough decision.   But unfortuantely it is a decision you need to make and make very soon.

If there are other doctors in the same office as your doc perhaps you can get an appt with more than one at the same time.  Get them to explain as a team why this is their decision (or see if they disagree with each other), why so many folks on pacemakerclub have had success with lead removal.

When you and myself and the others here that responded got our pacers decades ago, yes lead removal was not a thing.  Pacemakers were just becoming a thing in general they were a little past experimental and moving into normal/mainstream.  MRIs that came later were forbidden now they are possible because tech on both sides of that line (the pacers and the MRI machines) are improving.

My bottom line is always find a doc you trust, then trust the doc you found.  If you trust your current doc then stop reading these posts and trust her.  If you no longer trust her, if she cannot through another appointment or phone call explain in terms that make you feel confident that this is the better path (was going to say "right" path, there is no "right" path), then look around, even if it is a few hours away in a bigger city or a different big city.

find a doc you trust then trust the doc you find

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