Due for a lead extraction

Hello all, new member to the club here....

During a routine Cardiology visit, it was discovered that my defibrillator wasn't picking up certain readings. So, I requested a chest x-ray and my EP agreed. It was found that not only does one wire have a kink in it, the other wire was also twisted with the kinked wire. I looked online and it showed that the scenario could be called "twiddler's syndrome."

I'm a 29 year old mother of 1 that is fairly physically active. I enjoy hiking, walking, and jogging. I also have a punching bag where I occasionally practice my round kicks, hooks, and heel palm strikes (former Krav Maga student but I still like to brush up on basic moves). I received my second, but new defibrillator with original leads intact in Dec 2010 because the first one was low on battery. The procedure at the end of the month will involve replacing the old leads, and moving the device more central (it's been giving me issues under my left shoulder...it's moved around a lot)

I've had the original leads since 2005. My EP assures me that I've done nothing wrong and she has treated this scenario before with her other fairly active patients (athletes...marathon runners....) I've had this EP since I was first diagnosed with Complete Heart Block at 22 years old and she hasn't failed me yet.

Does anyone have any experience with lead extraction/device repositioning?

What kind of recovery time frame did you face following the procedure? Time frame before resuming light physical activity such as brisk walking?

And after a conversation with my husband last night, a sense of guilt and anxiety overcame me. He said "this could've been avoided." My EP says that given the length of time I've had these original leads....and the fact I do not lead a sedentary lifestyle....this is a scenario she has seen before and that I shouldn't feel bad.

Thoughts?

13 Comments

extraction

by Tracey_E - 2012-09-05 02:09:26

Is your EP doing it or referring you? Make sure you get someone who does a minimum of 100 a year. The lasers have come a long way and it's gotten much easier to find someone proficient. It's not the risk it was even 5 years ago but you still want an expert! Don't mess around with someone who isn't specialized in extractions even if it means travel.

Good luck!

agree with your doc

by Tracey_E - 2012-09-05 02:09:32

Your husband is wrong, do NOT feel guilty!!! What's the point of having our problems fixed with the pm so we can be active and feel good if all we do is sit around and act old on the very slim chance we do some damage? We only live once and I don't plan to spend mine on the sidelines, neither should you. Sometimes guys need to have someone to blame but often it just happens and its no one's fault.

And activity makes your heart stronger, so inactivity is dangerous also, just in a different way :)

Odds are good this would have happened regardless of what you had been doing. I also had a lead go bad, it was kinked. Maybe it was something I did that caused it, maybe it was just bad luck, but I haven't lost any sleep wondering what caused it. And I haven't slowed down since getting the new lead, either! My dr has always encouraged me to do whatever I want. He said the odds of doing damage are very slim, and if something does get damaged we'll fix it. *shrug* In 20 years and 4 pm's that's the only problem I've had. I hike or ski most vacations, do Crossfit 5 days a week, run, rollerblade, kayak...

You'd have to ask your dr about healing time but most are back to light activity within a week. Full activity will be like after the first placement, 6-8 weeks.

If you do a search for extraction, you'll find lots of other posts from members who have been through it. I was able to fit the new lead on top of the old ones so I ended up not extracting.

I didn't have a reposition but I had a plastic surgeon clean up the scar tissue from the previous surgeries (4) and rebuild the pocket so that's probably similar. Mine is buried deep, under the breast. I was moderately sore for a few days but only took tylenol after the second day or so, never bothered filling the pain prescrip they gave me. I was walking a few days later, back at the gym (no arms) within two weeks, doing push ups and anything else I wanted by 8 weeks.

Just curious, why do you have icd for av block? Seems like overkill, or is something else going on also?

to answer your question

by jscarpio1 - 2012-09-05 04:09:02

Hi Tracey,
Thanks for the feedback. I was also diagnosed with long qt. I had an episode of near sudden cardiac death which my mom was able to intervene on.

My EP has had many more complex cases before me so she will be doing the procedure. The repositioning will be done by a ct surgeon so he will be present as well. Both will be working on me that same day.

Thanks all

by jscarpio1 - 2012-09-06 01:09:58

Thanks for the excellent tips all.
Question: I've NEVER met the CT surgeon that will also be present with my EP during the procedure.

I have a Pre-op appointment at the Cardiothoraic department on the 18th (the anesthesia pre-op visit will be following that one on the same day).

Given what I've heard and read about the man, he performs a large number of lead extractions as well. Apparently, he's also traveled to other countries leading seminars/conferences about lead extractions and other cardiac related procedures.

It's to my understanding I will only be meeting his nurse practitioner on the 18th.He may drop in though depending on when he's done in the OR (from what I was told)

Are there any particular questions I should ask the NP?

(side note: I receive my care at a University hospital/Cardiovascular center. Both the EP and CT surgeon will be present at the time of procedure.)

thanks all. have a good Thursday.

I'm starting to develop a cold right now and I need to try and get over it....

Yes

by PacerRep - 2012-09-06 07:09:27

Make sure the laser rep is present as well, I think its spectronetics?? (spelling?).

Here's how to vet a surgeon...

by donr - 2012-09-06 08:09:57

...for a lead extraction. You've had this cardio/EP for all of 7 yrs. Great! That does NOT mean they are good or QUALIFIED to do a roto-rooter job in your chest.

I've traveled this road to the decision point on an extraction & backed away from it because in the end, it did not need to be done! Copied & pasted below are the results of that road trip, developed w/ the help of my cardio, EP , cardio's head nurse, & a scholarly article on the subj that gives the expected qualifications of a COMPETENT & QUALIFIED surgeon in this field!:

Don

Begin Copy & Paste.

"Now - it is ALL my comments - which, if you root around in the site archives you should find a literal treasure trove of info on the subject.

There are TWO things in here that you REALLY want to read - my comment on how to vet an EP for a lead extraction job & the link to the report that seems to be most helpful for someone in your situation. Every time we have a post about lead extraction & I respond & cite the success rate of 99%, ElectricFrank chimes in w/ his wet blanket on the significance of 1 out of 100 folks not making it - to which I have responded that those of us facing a lead extraction don't have much of an alternative w/ a better chance of success. We all have to make decisions that have crummy alternatives - this just happens to be one of them. As I always say - the alternatives are all infinitely worse!!!!! Don't get me wrong - Frank is one of the greatest assets we have here & he & I agree on just about everything we write - we just disagree on this one because we look at it from different viewpoints. I'm sure that Frank will chime in later tonight when he awakens out in CA.

I, once upon a time, had to make a decision on whether or not to undergo Radiation therapy for Prostate Cancer - as opposed to radical surgery. There were many unknowns & Once made, there was NO GOING BACK. This was Oct 2003. I'm still here, writing to you today about high risk procedures. I was given about a 50% chance of survival. The alternatives were 1) Do Nothing - 0% chance of survival. 2) Radical surgery - 90% chance of survival - but absolutely lousy life quality post op, w/ a very high probability of recurrence. I elected for radiation therapy & am still cancer free 8 yrs later. Pretty darned good, in my book.

I feel like I am qualified to discuss this subject w/ you - or anyone else.

To find the surgeon vetting interview outline - scroll down a few inches till you come to a line of asterisks. It starts there & continues till the next row of asterisks.

Lead Extraction Surgeon selection process:

(Comment posted by donr on 2012-03-07 07:44.)

PM5: I have not had one - but nearly had to. My first EP - about 5 yrs ago when I faced it, told me he wouldn't do it because he was not comfortable doing the procedure. They have a laser ring that they thread around the wire where enters the vein; the laser cuts around the lead, freeing it up from the tissue holding it in place. Sort of like a roto rooter for the vein.

It is a risky procedure, compared to threading new wires into the vein, but is performed frequently & with a reasonably high success rate. I now have a new EP - not because of anything the old one did, but because my primary Cardio realigned his practice w/ another major clinic as associates & picked up another EP. New guy does lead extractions all the time & likes doing them. I THINK he does a hundred or so per year. When he & I discussed the procedure about two yrs ago, I rec'd the impression that he gets referrals for the procedure from other EP's in the area. Based on my experience facing the job, I developed a set of questions that you should ask if interviewing an EP for the job.

There are at least THREE currently active in here who have had a lead removal that was successful & not much more traumatic than a PM implant - at least from the standpoint of someone who is completely zonked during a procedure.

Lead Extraction Interview

(Comment posted by donr on 2012-02-18 09:45.)

There are actually three options: 1) Just add a third lead in the current vein. 2) Move the PM to the other side, abandon the original leads & install leads on right vein. 3) Extract bad lead & add new in current vein.

First of all, I'm ASSUMING you have 2 leads currently - you didn't specify. That's my situation.

I lost a lead after about 4 yrs - complete fracture w/ about a 4 inch gap between the ends. My EP & I discussed it before a surgery to add a third lead. IF he found inadequate space in current vein, he wanted my approval to move PM to right side & use that vein system. I agreed.

My EP was NOT too keen on the idea of extraction (2007). We also discussed this as an option before the surgery. He said HE DID NOT do them because it was a complicated procedure using a laser "Roto-Rooter," & he did not do them because he was not comfortable w/ the procedure. Several months ago, I sent Pookie a series of questions to ask any surgeon prior to allowing him/her to do an extraction.Below is the original list.

*********************************************************************

This is a COPY & PASTE of MY open comment to Pookie on this subject. Her Originating Post was on 10 Jan 2012 & titled: "Lead Replacement Question."

WHAT IS AN EXPERIENCED EP?

(Comment posted by donr on 2012-01-10 17:38.)

You don't want some surgeon fellow doing this. (FELLOW - a surgeon in training in the specialty)

Find someone who does it all the time - at least 100 SUCCESSFUL removals per year. Oh, yes, macabre as it sounds, ask about his/her mortality rate. Any surgeon worth his/her salt will openly discuss this with you. (BTW: this is pretty much the same criteria used for finding a surgeon to do a radical prostatectomy, another extremely complicated & delicate procedure.)

Remember that your life is going to be in this person's hands & you will be totally unconscious, having absolutely zero control over your fate. You want to interview them just as you would if you were hiring them to work for you - WELL, you are, aren't you. Some questions to ask:

1) how long have you been doing this procedure?

2) how many total have you done?

3) how many do you do per yr?

4) Do you LIKE doing this procedure?

5) Do you do it in a professional environment where there are other surgeons doing it, but you are more comfortable doing it than they are?

6) Are you the predominant surgeon performing this procedure here? (Wherever "Here" is)

6) Tell me what your success rate is.

7) Lets be morbid - what's your mortality rate?

8) What is/are the most common complications of this surgery? Characterize them as minor or serious (life threatening)

9) Supposing you get halfway down the vein, successfully removing the lead - is there a way to terminate the procedure at this point if something goes south - other than the procedure, itself? What about if the problem is in the procedure you are performing?

Do NOT be shy about this. You have to be truly "Pushy" & take no waffling. I think I'm preaching to the choir here.

These are the kinds of questions my Cardio's head nurse says to ask.. Their practice is associated w/an EP who does this at a major university med school hosp. He is the predominant surgeon performing it; he thoroughly enjoys it; other EP's prefer to let him do them; he does well over 100 every year. Etc. etc., etc.
*******************************************************************
AN INTERVIEW TALE: (Does it work?)

I interviewed in 1973 an orthopod who had to do a rather rare procedure on our #1Son - stop his left leg from growing longer. The first question I asked him was "Have you ever done this before?" You'd-a-thunk I kicked him in the belly - but he answered "No." My next question was "Well, how do you know you can successfully do the job?" Another kick in the belly. Half hour later, after he'd finished convincing me that he could do it, I shook his hand & told him "You've got the job." Seems that it is a very straightforward procedure, but so rare that it is only done in children's orthopaedic hospitals. Most orthopods never even SEE it performed - they just read about it in books. At this point, he dragged out a moldy old text book & we wallowed around in it talking about the job to be done. And - it was a smashing success.

You need to find someone like our orthopod - who is willing to be vetted & willing to talk about the job openly, comfortably & openly - warts & all.

How do you check EP's out? The Web has info on a lot of surgeons w/ patient ratings. It also has a lot of info on what their specialties are, so get any name from a med center or just a Google search for a given city & you should be able to winnow the list of candidates quickly for an interview/consultation.

Here's the article on extractions - good reading:

http://www.hrsonline.org/news/media/press-releases/upload/leadextraction_cieds.pdf

Hope this has helped you. Any questions, I'll be glad to point you toward answers."

End copy& paste

Easier if ......

by ILoominatedEKG - 2012-09-06 11:09:39

I believe it's easier to extract if the lead is still intact. They pulled mine without the laser roto rooter routine and it was no more complicated than the original implantation (other than the fact it was done in a thoracic OR in case of a bleed out).

I must admit, however, that my lead had only been in for a month. Being knd of a beginner here, there is a LOT I don't know.

Keep in touch.

Dave

After my first device implant at 22

by jscarpio1 - 2012-09-06 12:09:23

Thanks for the words Dave. The similar recovery time frame between my first device implant and this upcoming extraction is also pretty good insight as to what to expect as an estimate.

After my first implant device in 2005, the site of the device was still sore but I resumed walking (flat surfaces..no inclines) after two weeks. Nothing too strenuous, but a nice distance. At three weeks I picked up my walking pace.

Of course I don't plan on doing anything too crazy once this lead extraction takes place. I didn't do anything too crazy after my first device implant, and I certainly don't plan on doing too nutty after this impending procedure. And of course, the usual no lifting heavy things, putting my arm above my head etc etc...I will follow doctor's orders.

The EP said that it was only a matter of time before the leads needed to be replaced anyways...the twisting and the kinked wire visual on the chest xray just happen to accelerate the process. But to be told that this could of been avoided feels pretty lousy.

And I wholeheartedly agree with you Dave: the whole purpose of this device is to let me live my life. Or as my EP puts it "to go about your business as usual" :)

I'm very thankful for finding this site. It helps to know that I am not completely crazy in what I try to tell my husband and parents in what I can do, what I can't do...etc For the longest time I felt no one could relate to me...much less understand.

Since this metal box I get "you shouldn't do this..." "you can't do that".......and my all time favorite..."YOU'RE NOT COMPLETELY NORMAL." And again as my EP said...."You don't need to be bubble wrapped"


Agree with other comments

by PacerRep - 2012-09-06 12:09:25

Lead extraction is serious business, do not just let anybody do this. I'm serious...don't take it lightly. Find the best extraction guy in your area....if you have to get on a plane and fly to a different city then do it. Boston (the city) has great extraction guys, so does Miami. there is a good one down in Phoenix as well. If the person taking the lead out does not do a ton of them a year then don't let him practice on you. The mortality rate for lead extraction is significant.

Best of luck

Just had one pulled

by ILoominatedEKG - 2012-09-06 12:09:28

I had one pierce my heart. They were worried about it bleeding out into the pericardial sac and causing tamponade (it smothers your heartbeat). It rarely happens, but is serious when it does. A ct surgeon did mine as well. He pulled it out and repositioned it in another vein.

The fact is, they will have to put in new leads, so recovery will take at least as long as your first PM. It's the same drill, since lead adhesion is the primary issue. I think the ct surgeon tethered mine inside the pocket (I'm not sure how or to what???). It doesn't move around any more.

Tell hubby to get his own PM then he can tell you about it. LOL. The PM is supposed to let you live your life, not take it away from you. But that's just my not so humble opinion.

Best wishes - Dave

PS: I trim trees for a living. Don't tell me what I can't do! LOL

removal

by Tracey_E - 2012-09-06 12:09:53

Dave, the rules totally change after the first year. Up until then,it can be pulled out most of the time. After that, scar tissue holds it in place and it has to be done with a specialized laser.

Why do you have it?

by polrbear - 2012-09-10 01:09:43

I don't completely agree with TraceyE's assessment: you might be contributing to the shortened lifespan of your leads. But...this aspect is more important: why do you have the device? As I see it, you have the thing so you can live your life, not sit idle.

Now that you're getting the leads replaced, it may be worth asking what movements you're doing that might aggravate this more (do you have alternatives?). Better yet, ask the EP if there are any changes in the implanation that might make it less likely to occur. Would a slightly longer lead do the trick? As they keep making leads thinner (less vascular obstruction, fewer materials used, etc.), perhaps an older model lead wire with a thicker core would hold up better.

My decision to have an ICD implanted was made for me and that EP had me ordered for minimal exercise, but I fortunately transferred to my current EP who quickly put me at ease by saying the device is there so I can do those things. OK, commercial trucking and piloting a standard airplane are no longer options, but I'm still going caving, I'm working on the ambulance again, and I've returned to running (my SCA was seconds after I finished a half marathon).

Had extraction procedure on 9/24

by jscarpio1 - 2012-09-29 05:09:55

Hi everyone,

*update* I had my surgery this past Monday on September 24th. They ended up giving me a whole new device altogether (leads and generator). They gave me the Incepta (Boston Scientific) AICD.

Out of my procedures (this being the third one), this seems to be the most painful. They also repositioned it a little further away from my left arm pit, so it feels kind of heavy right now (kind of like chest congestion that won't go away...breathing kind of hurts too). I've had issues with a corner constantly pertruding under my arm pit.

I'm looking forward to jogging again after the recovery period. I hope the congested feeling eases up eventually. (I don't have a cold right now.....its the best way I can describe it).

Hello to all and hope all is well

You know you're wired when...

You get your device tuned-up for hot dates.

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