An ICD Crossroads

In 2000, at the age of 34, my doctor here in L.A. noticed a strange heart rhythm. After many tests, a cardiologist suggested that I MIGHT have something called Brugada syndrome, a sudden death disease, even though I was asymptomatic. The abnormal rhythm was caused by a drug I was taking at the time, but the culmination of these factors led them to suggest an ICD implant, which I had. In 2007, I had the unit replaced and over the years, both devices never delivered any therapy whatsoever.

A week ago, I got a call from the Pacemaker lab saying that one of my leads is showing an unusual resistance trend and I would need to come in and probably have it changed (removed and replaced).

I find myself at a crossroads now. In good health, with no indications of disease or the original evidence that led them to implant the device, should I ask that everything be taken out or just replace the lead?

What are the risks and statistics of lead removal? Is it compounded if you remove both and the device as well?

Can you leave the leads in with no issue and just take out the device?

Am I better off getting the lead replaces and continuing on the every 7 years or less changing of the device, etc.

Obviously, I will be talking to doctors and getting more information about all this, but I was wondering about anyone else's experiences or thoughts that may help me at this stressful and confusing junction.


6 Comments

Monitor?

by candi51 - 2008-12-26 11:12:37

Would wearing a monitor for a while help the Dr's make a decision on whether the ICD is needed or not?
I would get several opinions before making a decision.
But I am known for being overly cautious :-P

add a new one when the battery dies

by Tracey_E - 2008-12-27 07:12:09

In most instances, you can leave several sets of leads in before they need to extract, they just put a new one on top of it. They only extract if you have too many or infection. Extraction is still fairly new and carries some risk. There are several here who have had successful extractions but there are also some sad stories of extractions gone wrong. Personally, I would not consider that unless there were no other options.

Is it working now? I'm not sure what an "unusual resistance trend" is, but "unusual" means not normal, not necessarily bad. And "trend" doesn't sound urgent and dangerous to me. If you're not using the device and your original problem was caused by medication you're no longer on, I think calling you in for an extraction is extreme. Worst case, they add a new lead on top of the bad one, but ask if it can wait until your next battery replacement. Why have two surgeries if it can wait?

I have had a bad lead for 5 years now. It's impeded but stable. They adjusted my programming and it's still functioning. Last time I had the battery changed, I chose not to mess with it. It shortens my battery life but is working so I made the choice (with my pm rep and cardiologist's approval) to leave it alone. I'll add that I pace 99% of the time so I very much need my device!

Thanks, TraceyE

by lukeamer - 2008-12-27 10:12:30

An excellent reply and very reassuring. I'll find out Monday what the doc. is suggesting, but to think that I might be able to leave the bad lead in until the next battery change is a good thought!


how'd it go

by Tracey_E - 2008-12-29 07:12:57

How was your appointment today?

My Appointment today

by lukeamer - 2008-12-29 09:12:15

So I walked into the ICD lab at the hospital and the Medtronic rep. and the ICD technician were there discussing the lead issue. Over the next 1/2 hour, I had 6 doctors walking in and out talking about the whole thing. Apparently, I am an interesting case.

Given my history, what they decided to do was lengthen the detection threshold on the bad lead so they could discount the "noise" but still give me the shock if I needed it. They thought that without any episodes, it would be too invasive to go in and replace the lead. They also gave me a magnet just in case the lead failed entirely and I found myself getting shocked unnecessarily.

They also said that since it has been 8 years with no episodes, I probably do not have Brugada syndrome and that 5 or 6 years from now I may decide not to replace the PM when it comes up for replacement -- just turn it off. And who knows what newfangled technologies will pop-up in the interim.

For now, I am relieved that I won't have to go back in for a procedure and that my docs have given me more attention than I expected. Phew!

phew is right!

by Tracey_E - 2008-12-30 05:12:56

I'm glad you got good news!!!!

You know you're wired when...

You fondly named your implanted buddy.

Member Quotes

My eight year old son had a pacemaker since he was 6 months old. He does very well, plays soccer, baseball, and rides his bike. I am so glad he is not ashamed of his pacemaker. He will proudly show his "battery" to anyone.