scared

Hi all- i'm new to this forum. I'm 40 and have had my defibulator (on my 2nd) since I was 28. I'm due for a battery change in the next few months and now the doctor is telling me my lead is requiring more ampage and so she thinks that means there is something wrong with the lead. She mentioned having it extracted but everything I read says that is risky. I have a 4 and 6 year old and am very scared to not be with them. I've been crying since Wednesday! A previous doctor had told me if the leads ever needed changing they would just add a wire. He had explained my vein as being the size of my pinky finger and the leads being the size of a hair. Not sure that is right, but made me feel like there was room for more leads if needed. This doctor said if I don't have it removed, she would move to the other side of my body and implant there, under my skin. Currently the device is on my left, in a pocket under my muscle, which I like.
I'm going to be seeing the head of electrophysiology soon, but am nervous for my safety and health.
Are there risks to putting another lead in?

7 Comments

Try not to be scared

by Grateful Heart - 2014-10-10 07:10:25


Believe me, I know it's hard.

It's good you are going for a 2nd opinion.

If your vein has room, they should be able to cap the old lead and put another lead alongside it in the same vein like your first Doctor said. That is the preferable approach unless there is something we are not aware of.

There are risks with every procedure but having the additional lead added like your first Doc is suggesting is easier. I had a lead revision and that is how they did it.

So take a deep breath and wait until you see the EP.

Grateful Heart

You got some bum info...

by donr - 2014-10-10 11:10:53

Your Dr kinda lead you astray. The vein in question is about the diameter of your pinky; but - the PM leads are NOT the diameter of hair. They are between 1 & 3 mm in diameter - depending on the lead. That's between 1/25 of an inch & 1/8 of an inch. Defib leads are mostly in the 1/8 inch size

Grateful Heart said she has three leads in one vein; I also have three leads in one vein. No competent cardio is going to overload a vein w/ leads. If you are an itty, bitty size 4 petite dress size, you might have a space problem; most likely you will not. But get that second opinion anyway. For peace of mind, if for no other reason.

As to the risk: DO NOT allow anyone try to remove a lead w/ a laser roto-rooter device unless they do about 100 removals per year. hat is what is considered the minimum for keeping proficient at the procedure. ALSO, make sure that you are done at a hosp w/ a cardio-thoracic surgeon standing by & the appropriate OR immediately available.

The risk factor is that there are adverse events in about 1-2% of the time for proficient removal surgeons. There are many members who have had leads successfully taken out w/ a laser roto-rooter device.

You will be fine if you choose your surgeon in accordance w/ the criteria I gave you. that's the criteria recommended by the certification board.

Donr

veins

by Tracey_E - 2014-10-12 07:10:02

Most people have room for 3, some have room for 4 while others can barely fit 2. They can do a venogram- an iv with dye in the cath lab- to see if you have room in the vein. When I was in the same situation as you, I insisted on doing this in advance. If I was going to end up with an extraction, I wanted to plan it and choose my surgeon, not necessarily the same surgeon who would do the new lead. The first dr I went to nonchalantly said he'd try and if it didn't fit then he'd move it to the other side or extract. No Way was I going under anesthesia with a plan that vague!! I moved on to another surgeon. We did the venogram, I had room, so he capped off the old lead and put the new one in.

As Don said, get someone who is very specialized and does a lot of them. Once upon a time when it was new and not many surgeons had done it, yes it was a bit risky. Not so now. The sheaths they use have come a long way and there are a lot more experienced surgeons out there. It is not a high risk surgery anymore but it is highly specialized, no reason to mess around with someone who isn't doing them several times a week.

And

by Creaky - 2014-10-12 10:10:44

I just want to emphasize that any lead removal should be done in an OR with surgical team standing by, in case you are the 1%.
I switched EP docs when my leads broke for the second time.The original doc was going to go in as Tracey said, in a very cavalier manner and in the Cath Lab, not the OR. The much more experienced Doc I switched to did the procedure in the OR. He said that in case of a problem you have seconds not minutes.

Thank you

by catj - 2014-10-13 03:10:09

Thank you all for giving me good questions to ask when i meet with the new doctor. They called and soonest they can get me in is Nov 25th to see him, but i'm first on the list if someone cancels or he has other appts open up.

I think the hardest part is most of the time, i don't even think about having the defibulator or issues so when i'm faced with having to deal with it, I am really nervous. Plus, when i had it first in, i didn't have kids and wasn't near as nervous about my health. I had a really good doctor that i trusted completely. I don't have that doctor anymore due to a car accident he was in, and the subsequent doctors i've had, i have had little to no faith in. Hopefully this doctor will restore my faith- he's head of cardiology/electrophysiology and everyone keeps telling me he is a pioneer in the field. So hopefully he had good things to tell me.

Children

by Grateful Heart - 2014-10-13 04:10:40


I understand. Once you have kids, it's a game changer.

The good news is your new Doc is head of his department and I'm assuming everyone saying good things about him are Nurses, etc. so that is always a great recommendation.

It's the waiting that is the hardest part, I know. Hopefully, a cancellation will occur.

Keep us posted,

Grateful Heart

whew

by catj - 2014-11-25 05:11:23

So I finally met with the head of electrophysiology. I was comforted that I liked him and he was straight forward. He said he would prefer not to remove the lead and thinks the leads that are there are working sufficiently for me. he said he couldn't guarantee a new lead would work any better. He also will put it under the muscle where it is now. Such a relief.

However, he wants to get the most juice out of the one I currently have. I am currently ERI, but he says I have some time so will see me next month. He said they will try to avoid me going to EOL? or something like that...because it will revert from pacing in the atrium to pacing in the ventricle and ill feel crappy. Anyone know what the heck that means? All I know is I don't want to get to that point. I understand getting the most out of the device but I don't want to have to worry about feeling crappy.

Overall- good news. What I was most worried about was the lead extraction, which probably won't be necessary.

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