I've just been for my 12 week pacemaker check and brought up my concerns about the lead under my collarbone; for the last 8 weeks I've had a visible loop of wire as a bulge next to my collarbone when I lie down, and a burning/tearing sensation when I move in certain ways, especially bad when I sit up in the mornings. As I told him this he wasn't concerned and said it was normal for the wire to have slack and be visible especially in a bony part of the body without any "padding" like the collarbone. He did my check and confirmed that the pacemaker was working normally so it shouldn't be an issue. I wanted to show him how it looks when I lie down and at that point he said it shouldn't be doing that and that he would make an appointment with my doctor and that the likelihood was that I would have to have the lead replaced; I clearly wasn't describing it well enough for him to change his mind within a minute.
Has anyone had a lead extracted before? Is it the same procedure and recovery as the pacemaker itself? I don't know if I can face going through this again such a short time after having my pacemaker inserted.
Ha just shows doesn't it that they don't always really listen to what you are saying.
Hopefully it will be farley straight forward to sort out for you.
Still as much as it has been a pain for you. At least you're on the right track now. And of course if anyone else comes on here with the same quires you'll be able to advice from experience, bless ya 😊
Really sorry to hear this. But glad it has been spotted so it can be sorted. I hope the next procedure will be a quicker one for you and hopefully then quicker to recover too.
Could you perhaps ring your OCD nurse to ask... they have been a wealth of information for me.... and hopefully offer some reassurance around the procedure xxx
Sorry I meant to say ICD nurse. When you had your pacemaker fitted did you attend a pre op and have all details discussed by a specialist nurse? And if so did they give you either then or post op a phone number to call if you have any queries? If so j would give these people a call. Good luck x
Ah I see, no I didn't, I'll just have to wait for my cardiologist appointment and see what he says. So frustrating to think of going through it again so soon. I found it painful and hoped that I would have forgotten how bad it really was by the rimebthey had to operate again! xx
I can understand your frustration, I really didn't enjoy getting my pacemaker fitted either, though I was lucky and had no major issues afterwards. I don't imagine that getting the leads replaced would be as unpleasant/painful, since presumably the "box" part wouldn't have to be moved? I guess, at the end of the day, it is something that needs to be done and at least you will be more comfortable afterwards, much as you don't want to go through the procedure itself. I can feel my wires in my armpit sometimes and it gives me the heebie-jeebies (shudder) so you really do have my sympathy.
Thank you for your reply, I am hoping that as the box is ok the lead won't be as bad but have read it's a difficult procedure. Will discuss with y doctor but frustrating to wait for appointment and not know what's going on; I'm a planner! xx
Good luck. Very frustrating if you are someone who likes to have all the info and plan accordingly.
Hi there - sorry to hear you're having some issues with one of your leads. An extraction is usually pretty straightforward - we just remove the existing lead and pop a new one in. You shouldn't need anything doing to your other leads (if you have any) and the box should also be fine. Your recovery should be pretty much the same as before - you'll need to limit your arm movements while the lead gets settled for about 4-6 weeks. If you have a specialist nurse you can talk to that might help with any specific questions you have too.
I hope this helps,
Chris
• in reply to
Thanks for the information. I had read online that extracting leads is a difficult process so I will discuss with my doctor what the procedure involves as some people have said that they had general anaesthetic and some local, so I'm not really sure at all what to expect!
I had a dual lead pacemaker inserted in 2011, "in case they might need to pace the atria"... then, after three cardioversions and two ablations, they wanted to use the atrial lead, and could not, because the atrial lead was out of position (and there is a visible loop of wire over the pacemaker).
They told me that there was a one in 200 chance of mortality if the repositioned the lead.
The pacemaker has not been working right for years, but they now say that it used to work 70% of the time, and now it is only working 30% of the time, because the pacemaker thinks that it's battery has low charge.
I am often in "dormouse mode" and I hope the new pacemaker will be an improvement.
...but will they be able to get the atrial lead to work?
¿Do they have pacemakers with a "boost" function so that I can avoid postural hypotension?
Hi Bevvies....you may have already had the procedure, but I have only just read this thread. If not, can I just say that you can ask for this to be carried out under general rather than local. All of us are different and some, like myself have an absolute phobia regarding procedures and even seeing the 'tools of their trade' sends me into panic mode.
I had my CRT-D fitted under general because I panicked and refused when they explained what the op entailed.
When my pacemaker was fitted by a trainee cardio. One of the leads was inserted in the wrong place. I was awake enough to hear the cardio tell the trainee to retract it and place again. I don’t think it’s a big deal. They replace batteries I believe after 10 Years.
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