Hi all-

So I just went to my doctor who recommended that I get my old leads extracted when I get my new device put in within the year as there is 'noise' (interference) noted in one of the leads. I have had the leads since my first implantation when I was 18. I'm 33 now and very concerned that this is a potentially horrendous idea (I have been good for the past 10 years) considering the hugh amount of scar tissue that has made these leads very much a part of my body. I have read a lot about it, and am not sure that the risks outweigh the benefits. I called my old physicians in New York as they have treated me since I began having cardiac issues (my husband and I recently relocated to Florida and obviously I needed a guy down here). I am super stressed out about this... as I have read so many contradictory papers/facts about lead extraction. I guess I'm just venting. Pretty stupid I guess- I thought I was really adjusted to this in my life.

7 Comments

Not stupid to vent...

by donr - 2012-07-18 05:07:02

...venting is a necessary part of getting to the real part of the problem. It gets rid of the anger so you can focus on the rational part of what you have to do. You say you are/were adjusted to being a PM host - you may HAVE BEEN. Note I used past tense - Your heart failed you at age 15 - you rec'd a PM & re-adapted to life, apparently coming to terms w/ the first failure & subsequent PM issues. Now, that very same PM & its leads that were so faithfully serving you have failed you - you must face the uncertainty of your heart again. I hope That you have yelled, screamed, thrown lamps, broken windows, smashed dishes - all the things that angry people do - I forgot one - looked Heavenward & screamed at the top of your lungs "Why Me, God? Why Me?"

If you've done all that, let's get on to the real issue - Just what the %$^$#@%^&* are you going to do about it? Let's see if i can give you a bit of guidance here.

1) your original heart had a finite lifespan - they all do - yours demonstrated that its lifespan w/o failure was 15 yrs.

2) "They" implanted a PM/leads that, short run, was more reliable than your heart. short run is defined as about 10 yrs. The leads lasted some 15 yrs - not too shabby at all. After all, they were surviving in the most hostile environment known to man (Short of a vat of concentrated sulfuric acid), so they were really on borrowed time. Granted there are some folks here whose leads have lasted nearly 30 yrs - but there are others of us whose leads have failed in less than 4 yrs (Like me).

3) You have several choices:
a) have your leads extracted & replaced - which is apparently scaring you crapless.

b) Sit, paralyzed w/ fear & do nothing, which will lead to eventual total lead failure & consequences too horrible to write about in a mixed population publication.

So, you've done research & reading & found a mixed bag of articles that have confused you beyond rationality.

Lead extraction has advanced tremendously in the last ten yrs - using a laser "Roto-Rooter" has enjoyed significant success at low risk. Its success rate is now at about 99% in the gloved hands of a well experienced coronary plumber.

I will send you, in a plain electronic brown wrapper, the definitive web reference on lead extraction - in case you haven't read IT yet. I will ALSO send you my litlle monograph on "How to vet an EP for lead extraction."

Even better, if you chose, I'll give you a reference to an EP in Atlanta who meets all the criteria for "Experienced as described in my monograph. For another woman w/ the same issues, I rec'd his permission to use his name He & I already talked lead extraction when I faced its potential two yrs ago.

Do not feel bad about your situation - stress/anxiety over things like this NEVER go away - they just submerge, only to resurface another day.

Be glad to help you any way I can.

Don

Scard

by C. Wynn - 2012-07-18 11:07:02

I to will be facing the she thing on my next sugery . Pace check shows 5 years or so . But there is always going to be fear . Just gotta live day to day. Hope it all works out for you :):):) My leads are 20 years old this Sept . 28 . 3rd pacer . They are still working great no problems thank the lord.

Alternatives in Lead Extraction

by donr - 2012-07-19 10:07:29

You didn't say - what did your Old EP in NYC suggest you do? Since he doesn't recommend extraction. Is he the one who suggested that they switch the PM to the other side?

Be wary of EP's who have been out only 2 yrs & are willing to risk higher risk procedures - not necessarily a god choice. Probably would not fit my vetting rules. You really want someone w/ a GREAT reputation for his work NOW. Not necessarily how good the school he attended was.

Don

Update

by pippapewter - 2012-07-19 11:07:32

First, thanks so much Don for the very helpful information! I appreciate it!

Second, C. Wynn, I hope all goes well for you too.

My NYC EP (He's one of the top EP's in the nation) called me yesterday and advised AGAINST lead extraction. He said that it is a 'high risk procedure' and that my age is not considered a valid reason to extract the leads. He only recommends extraction when it is absolutely necessary. It would be up to and perhaps more than 8 hours of general anesthesia (risk in and of itself) not to mention the other known problems that could arise from this procedure.

My new EP is highly educated (Harvard Med/Columbia Pres NYC fellowships), but has only been out of school for two years... I find that the younger doctors of any medical genera are more eager to take greater risks compared to seasoned MDs.

C. Wynn... I STRONGLY SUGGEST THAT YOU GET A SECOND OR THIRD OPINION with regard to lead extraction in 5 years! If it were that pressing that the leads be removed, you would be in the OR this week.

I do however face the prospect of having the new device placed on the opposite side of where it is now as there might be too much scar tissue which would really, in a word SUCK. Well, whatever... I can't do anything about it so I'll just deal with it when the time comes.

I'm over the 'angry why me' part of this : ) I was pissed from ages 18 to about 22. Now I just anxiety when I have to go to the EP. Probably because I started teaching and coaching track at that time and had no time to worry about myself as I thought the stress and exhaustion associated with teaching would surely kill me within a few years. I would tell my students about my heart problems and my pacemaker and inform them that despite their attempts at killing me, my heart would go on like the Celen Dion song.

Working full time on my feet all day long was a huge struggle for me with my condition (neurocardiogenic syncope and bradycardia). I miss teaching, but not how physically horrendous I felt each day.

the cleaveland clinic

by pippapewter - 2012-07-23 01:07:10

My old EP said the worst caase scenario would be placement on the opposite side pending the amount of scar tissue which will be impossible to assess until they are 'in'. I too was not thrilled with someone 2 years out of school, however, he was the best listed in my insurance provider directory... I still have a year left so I'll see what happens. If I did have to get the leads extracted I would go to the cleaveland clinic. They have the best sucess rate (99.5%) verses the national ave of 97% sucess (+/- 3). Thanks so much for your concern for a complete stranger.

8 hours of anesthesia?

by bjbumblebee - 2012-07-23 12:07:03

I was just reading further through the posts and you mentioned you were advised that the procedure requires up to 8 hours of general anesthesia (??) . Wow, that seems like a long time. I had 3 leads extracted and a new PM implanted and was only under for 4 hours. I had lots of scar tissue that the doctors had to deal with also. Also, even if the PM is implanted on the other side, the leads all have to go through the superior vena cava and there is only so much room so the old leads will still need to be extracted. Anyway, wish you the best.

Lead Extraction

by bjbumblebee - 2012-07-23 12:07:39

If it helps at all, I am 51 years old, had my first pm when I was 18, and in March 2012 I had 3 leads extracted, one which was 30 years old. Yes it is a scary procedure to undergo but I had a very experienced team of doctors and God on my side. The surgery was a success. My prayers are with you.

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