Wire issue

I'm 32 years old and got my first AICD/pacemaker when I was 24. I had the battery replaced last year. I got the device placed because of Long QT syndrome. Up until a week ago, I have not had any problems with my device. I have not had any Long QT episodes where the pacemaker had to kick in or the AICD go off. Basically, this thing has just been taking up space without having to do any work. Last week I went in for a routine device clinic check-up. I was told that the wire was cracking and would need to be replaced; I only have a single lead. I met with my doctor last week and he explained the risks of the procedure including vessel perferation and the need for emergent surgery. I'm scared, to say the least. I have two young children, one of whom does have LQTS, and I don't want to have the surgery. I asked the MD if the device could just be taken out. Of course, he would not recommend taking it out, he wants to replace the cracked wire and connect it to my current battery. I have a few concerns.
1. How long can leads last? I'm only 32 and plan to have a long life so will the wire need to be replaced every 10 years or so? Doesn't scar tissue just build up around with wire as time goes on?
2. Has anyone had a wire removed? If so, how did the procedure go?
3. Anyone else with LQTS, have you opted to have the device removed and just stay on a beta blocker?

I'd appreciate any advice or suggestions anyone has.
Thank you!

4 Comments

Lead life

by ElectricFrank - 2012-11-04 01:11:17

Leads can last many years, but occasionally they fail. One option that is safer than removal is to just add a new lead. Most of us already have 2 leads down the same vein so there should be plenty of space.

Removing a lead is risky as they scar into the vein wall. New techniques are being developed so putting off the removal might make sense.

If you absolutely need to have it removed it's important to have someone do it who has lots of experience. There have been a lot of good reports about the Cleveland Heart Hospital record with removals. You just don't want some doc who does one once in a while yanking on a lead embedded in your vein and heart wall.

Most important of all is to realize that, not the doctor is in charge of the decision on what to do. Don't let the green coat intimidate you

best wishes,
frank

removal

by Tracey_E - 2012-11-04 08:11:55

I would ask about simply putting a new lead on top of the old one, you should have plenty of space. Lead removal is not as risky as it used to be but there is still some risk involved. Some drs prefer to always remove and start fresh, esp with young patients. We have quite a few members here who have been through it and came out fine. If no one replies, try a search for "lead extraction".

I had a lead go bad a few years ago. I did my homework then decided that as long as there was room for another lead, I did not want to extract yet. I'm 46 and have been paced since 1994. I figure if we extracted now, at some point in my lifetime I'd wear out what I have and have to do it again. Leads continue to get thinner and more durable. Extraction technique continues to improve. If I can go 10 more years before extracting, 10 more years for technology to advance, that's what I'd rather do. My dr was ok with that decision.

I had a venogram (iv with dye) to determine how much room I had for another lead. Usually they would do it during surgery but I wanted to know in advance so we could discuss the options if there was no room. You only have one lead, however, so it should not be a problem. Most of us start with 2 leads.

If you decide to extract, get a specialist who does a minimum of 100 per year. This is a very specialized procedure so don't have it done by someone who does it only occasionally.

Average lead life is 15 years. Some don't make it that long, some members here have leads 30+ years that are still going strong.

Removing the whole thing is not a good idea.

K: Did I Send you a...

by donr - 2012-11-08 02:11:33

...Private Msg on the lead extraction subject?

I know I composed it, did a lot of research for you & now cannot find it.

Don

Message

by kdavies - 2012-11-12 08:11:30

Don,
I don't see a message. I'm new to this site so I'm not exactly sure where I should be looking for all messages, but my new messages are listed as zero.

Thanks!
Kristin

You know you're wired when...

You can shop longer than the Energizer Bunny.

Member Quotes

I have a well tuned pacer. I hardly know I have it. I am 76 year old, hike and camp alone in the desert. I have more energy than I have had in a long time. The only problem is my wife wants to have a knob installed so she can turn the pacer down.