Update - Shoulder pain from pacemaker

[Czech_Mate]

Hi all

A couple of weeks ago I posted about how my pace maker (fitted in May 2022) seemed to have moved up and I thought was causing problems with my shoulder. Something is certainly wrong there, it's painful if I try cycling for example.

Anyway, yesterday I went for the 6 monthly check-up for the PM and the doctor (not the same one who fitted it) said that electrodes from it were sitting under the collar bone which could be a cause of discomfort. His approach was to say that a repeat operation to resite it would be possible but to consider carefully the risk of infection and hassle of discomfort for 4-6 weeks. Obviously they don't want to do that unless really necessary, and I agree - it all comes down to quality of life. We agreed that if things got worse that they would do the operation if necessary. In the meantime I want to go to my GP to see if the cause of the shoulder pain could be something else.

My question for anyone still reading is: "Has anyone here had their PM resited, and if so what was the experience like?"

Thanks for any input and have a good day, it's going to be a hot one here with probably thunder later. Cheers CM

[opal11uk]

Yes, I have a friend who was fitted with a pacemaker and it was too high, under the bone, and caused her a lot of pain, she had it rested and has been fine ever since, no problem or complications, she is in her 70's. If you want it re-sited then go for it or alternatively you stay as you are with the discomfort. Good luck

[Czech_Mate in reply to opal11uk]

Thanks for this. I'm undecided at the moment. The input on here has been useful as usual.Cheers CM

[bantam12]

I’m aware of shoulder discomfort/pain and restricted range from my pm on certain movements or if I overstretch my arm, I would rather manage it than have it moved and possibly be no better off or maybe worse.

[Czech_Mate in reply to bantam12]

Aye, there's the rub. To do or not to do?

Didn't some guy put it similarly? 😉 Cheers CM

[CDreamer]

Hi - I have not had my PM resited because of pain but did have to have a revision to my LV lead so the PM was removed and resited because of scar tissue had built around the PM causing some tightness. It was a lot more painful and involved procedure than the original placement because of the scar tissue (which had contributed to some discomfort) had first to be removed. It felt as though someone were digging into my chest. It’s not a procedure I would willingly have gone through unless it had been essential.

I should add that I later learned the cardiologist who originally implanted the device was not competent to do the LV lead placement, had not sited the PM correctly and not cauterised blood vessels correctly and had used staples to close, evidently not good practice as this increases the chances of infection to the heart. I say this simply to offer information on things to question your cardiologist about. I made sure when my husband went in recently for a box replacement that they closed with stitches, not staples by expressing my deep concern about infection as he already has a heart valve damaged by infection as a child.

If you were to go ahead, I would research for a cardiologist with good experience and track record and ask detailed questions about precautions to prevent infection, which is a big concern. Maybe delve deeper as to why your cardiologist is hesitant, although I think they have a very valid point. I know several people who have had infection from PM revision or replacement which can easily travel down the leads to the heart, causing infections in the heart which can be life threatening. Making the pocket big enough to take the PM whilst not damaging essential soft tissue and nerves requires a very high level of skill. If your pain is ONLY when cycling I think you need to balance the risks:benefits carefully and research thoroughly before going ahead.

Have you seen a physiotherapist? That would be my first move as a really good MSK expert can often diagnose soft tissue and nerve. In the UK GP’s and doctors generally now do not deal with this type of issue and we self refer directly to MSK (Muscular Skeletal) through physiotherapist. At least in my area.

I should also explain that I cannot have sedation or GA so the 3+ hour procedure was painful near the end as the local anaesthesia had worn off. I had used deep meditation techniques to help me through the procedure but I was told later that very few people would have been able to stay very still for that length of time so take the sedation if you can!

The result was however, much more comfortable and the reattachment of the LV lead meant my heart could be paced much more effectively - so worth the pain and recovery and I have had no further issues.

[Czech_Mate in reply to CDreamer]

Thanks for taking the time to add this input, useful to me and I hope others who face a similar situation. As I write this there are several replies from people who have faced this decision for various reasons. I don't know where else I would find folk like you willing to help by relating their experiences.

Cheers C_M

[quanglewangle]

Hello

I had the identical experience and because of the concerns expressed decided to live with it. Over the years it has often felt uncomfortable being so close to the collarbone but mostly I have been unaware of it. Last week it was replaced (7.5 years on) and I am hopeful that it will feel better in time when the swelling and scar settle down.; stitches are internal self-dissolving and the incision was glued so onward and upward !!

[Czech_Mate in reply to quanglewangle]

Thanks for this. For me the initial fitting was without serious problem. I had recently had tooth implants done which was a far worse experience. The stitches were also self-dissolving. I'll wait until I've seen someone else about the shoulder to see if it can be eased in other ways and perhaps they can advise on what I shouldn't be doing to make it worse. If not I'll see if it gets worse (or better - I suppose that's also possible) before I decide to go ahead.

Let us know how things go for you.

Cheers CM

[37Polly]

Ihave had a pm since 2020, and find if I sleep “ wrong”, for example on my left side with shoulder up high with pillow under, I awake very uncomfortable with pace maker under my chin. Also my skin is very thin and I worry about abrasive stress requiring an early replacement. So far, however being more alert to sleep posture has helped.

BTW for anyone considering the pacemaker, it was the easiest part of my 7 year adventure with afib and aflutter. Would encourage anyone to do it, don’t hesitate.

[Czech_Mate in reply to 37Polly]

Thanks for this. Incidentally for me I can't sleep on my left side as I feel the heart wobbling (my AF is permanent) and it worries me.

[OldGrit]

I had a pacemaker that started to come through my skin. On the Tuesdsy I rang the BRI , on the Wednesday they told me to visit for examination. They examined me and told me to come back on the Friday and after a quick chat they resited the pacemaker deeper in my muscle … a few weeks of taking care but at least it’s buried out of harm’s way.

[Czech_Mate]

Thanks for the useful input. I've read your bio and admire your approach to life. Necessary to keep a balanced approach to deal with the frustrations of afib.Cheers CM