Fear of pulling a lead out.

Hello.

As some of you know I got my pacemaker very recently. I am in constabt fear that a lead might dislodge. From day 2 after the surgery I went back to my normal activities except driving and excercising, I have also been very careful not to put my arm up or lift anything heavy. I go on long walks wirh a moderate pace and ride on cars as a pasanger. 

The pacemaker is doing its job very well because from day 1 I felt the change, so I am much more energetic now.

But after learning about lead dislogement, I am terrified, I don't want to be in another procedure. And it seems that sometimes the lead can dislodge without any particular reason, maybe the doctor didn't screw it correctly or you just have bad luck. 

Has any of you had a lead coming out of its place? Is the surgery difficult? 

Thanks in advance.


8 Comments

fear

by new to pace.... - 2023-01-12 07:45:47

Welcome to the club you did not want to be in.  That is a normal fear.  Just follow what the doctor says you can do safely and you will have no problems.

new to pace

Terrified

by Penguin - 2023-01-12 07:55:25

Hi Mao, 

It's quite traumatic to have a PM implanted; the operation; after effects etc. and to fear further intervention or things going wrong afterwards.  When so many things have already happened that are negative, it can be hard to switch into positivity and to expect that everything will be alright going forwards.  I wonder if this may be the root of your 'terror' about lead displacement?  

You are right that these things 'can' happen. However, what matters most is

a) the 'likelihood' of lead displacement and

b) whether or not lead displacement has actually happened.

The level of terror you're experiencing needs to be relative to these two factors.   

Someone once told me that the best way to deal with any sense of dread or terror about something that 'might' happen is to tell yourself that there is nothing you can do about it unless it actually does happen.  I know that sounds really obvious, but it taps into your sense of logic which is more reliable than terror. There's no point in wasting energy on this if you can avoid it. 

Could you try some positive actions which would begin to provide you with some positive and reassuring feedback? E.g.

a) Distraction.  Try absorbing mental activities or try walking outside and noticing nature and the good things around you.  Takes some perseverance to get into a positive state of mind but these can help. 

b) Starve the Fear. Don't feed the fear by googling what 'might' go wrong. Starve your mind of the negative feedback and provide it with the positives.

b) Fact Find. To counteract the unknown (which feeds doubt / terror,) contact your clinic and ask if the leads are reporting information and sensing / pacing, If the clinic are receiving this information then it is certain that your leads are properly attached. This discounts one of your fears. 

c) Likelihood. If the leads have been well attached it's very likely that over time they will 'bed in' as they should and will function well.  You can't do anything to prove that this will definitely happen but it is extremely likely. Ask your EP how common lead displacement is. Hopefully this will be reassuring.

d) Images. Sometimes an EP can show you an image of your PM and the leads in your heart to reassure you further.  They may have an image from the operation. If you can see it, it is easier to believe it. 

I know that this post might come over as patronising, but that's genuinely not it's intention. Lots of people need reassurance when cardiac issues are life threatening. Operations can be intimidating and scary. Don't be afraid to speak up and ask for the reassurance you need.  Slowly that terror / threat response will calm down as you receive more and more positive cues and feedback. 

Please take care xxx

 

leads

by Tracey_E - 2023-01-12 08:45:14

If a lead stays in place for the first 48 hours, odds are very low that it will come dislodged after that. You are doing all the right things! 

Be sure to use the arm as much as possible so you don't get frozen shoulder. Don't lift anythig heavy or raise it above shoulder level, other than that use it normally. 

Know that if a lead does come out, it's more likely it wasn't in a good place to start with or the heart wall didn't like it, not that you did anything wrong. It's not usually the surgeon's fault either. As you said, it would just be bad luck. 

If a lead were to come loose, they'd go in the same place and fix it. Much much easier procedure than original placement. But now that you've made it past 48 hours, odds of that are less than 1 in 1000. 

Also know that all of your feelings and fears are perfectly normal. Keep up the walks! That was the number one thing that helped me. The better I felt, that I could go for a walk and feel good, the easier it was to learn to trust the pacer to do its job. 

Youโ€™re ok๐Ÿ’—

by Lavender - 2023-01-12 08:53:52

We all had that same fear. It rarely happens. I remember freaking out because I reached up into a kitchen cupboard real high to get something down within days of getting the pacemaker. I immediately was frozen in fear. I wanted an xray to be sure the leads were ok. Of course, I called the cardiac nurse. She said not to worry. They put a lot of slack in there. There's extra "wire" wrapped around behind the pacemaker to allow for movement. 
 

Your fear is common. Your body is already working to grow fibers around the pacemaker and leads. It sounds like you're doing well but remember to keep moving and using the arm so it doesn't get stiff. Don't baby it- just don't lift it above the shoulder. In time you will forget all this and use the arm just fine. ๐Ÿ’๐Ÿ’

"positive and reassuring feedback?"

by AgentX86 - 2023-01-12 14:44:17

To add to Penguin's comments:

e) is something might happen that you have no control over, it's not worth worrying about. There are better things to fill one's head with.

Same concerns

by Johnxyz - 2023-01-13 21:59:42

I had the same concerns when I recieved my Medtronic dual lead pacemaker in July 2021. I think we probaly all shared that same concern. In my case I had to keep my arm in a sling for 6 weeks and not lift may arm over my shoulder for 12 weeks to make sure my pacemaker leads scarred in correctly.

Afer the concern you expressed I then had a concern about wearing out or breaking a lead to my pacemaker as I am very active.

I am happy to say all those concerns are now past me. I am very active and go to the gym each morning 5 days a week to lift weights and do 1 hour of cardio training.  I am retired and have a Total Gym machine and will use that a couple of times each week at home also.

My point in telling you that is I am constantly and repitively lifting my arms and have no concerns with my pacemaker or leads. As you will find out when you go to your cardiologist they not only check out your pacemaker data and battery life - they also check your leads integrity.

For me both myself and my Cardiologist have no concerns about my workout routine.

Good luck with your future health. The pacemaker was the best thing that has happened to me in a long time. It has given me back my life after continually battleing Heart Block for many years.

If it helps

by PacedNRunning - 2023-01-17 03:11:05

I had zero arm restrictions. Well one. Don't reach HIGH above my head for a week. I went back to play golf(5weeks) and running 2 weeks! The leads once adhered are so hard to remove or dislodge many doctors leave them in place because they are so hard to remove. I keep that tucked in the back of my head.  It's also not on a pulley system. They actually go closer to the heart when you reach up not pull. Try to ease your mind. 

Leads Pulling Out

by Marybird - 2023-01-20 00:47:55

I think we all fear that happening when we first get our pacemakers, I know I did. It's reassuring to know about the unlikelihood that a lead will be dislodged, either because of the extra slack in the leads, and/or the lead tips really are anchored well in the heart tissue. 

That said, my sister, who like me, had a pacemaker implanted for sick sinus syndrome- tachy-brady type, managed to dislodge a lead about a week after her pacemaker was implanted. She had the remote monitoring set up and her EP's office notified her about the dislodged lead. She said she went back into the hospital to have the lead reattached, and was home a few hours later. I don't know how her lead dislodged except that she had told me about 3 days after her pacemaker implant that she was tired of the rules and intended to do as she pleased, including lifting her left arm over her head, lifting any weight she wanted, driving everywhere. That is kind of how she was. I always figured she probably dislodged that lead rough housing with her then 2 year old twin grandsons, which she loved to do. 

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