Pacemaker moving!

[Nannyjenny]

I had my pacemaker moved last year during OHS as it had moved and was catching on bone towards my shoulder. Now it has moved in other direction and I can feel it rubbing on bone the other side and when I turn on my side in bed I can get my fingers under it. It is loose and not bedded in as I was told it would. Does anyone have similar?

[fantasyfanuk]

Yes I have similar issues with mine. I can’t feel it rubbing against anything but it is quite loose and moves around a lot. Sometimes it seems to tilt outwards, like a door swinging open, which can be pretty painful and is always disturbing! I have to press on it to sort of flatten it back into position and yes you could get fingers under it. It is also very close to the surface and can often feel uncomfortable, particularly if I have to have to reach across my chest. The cardiologist says it shouldn’t be “tethered” and should be movable but admitted it wasn’t in the best site. However it was difficult to get in place and he is very reluctant to attempt moving it. I’ve only had it one and a half years so am stuck with it for now I think!

[Nannyjenny in reply to fantasyfanuk]

As I said I had mine moved and for 3 months it was great and, being female, was told that it would migrate "South" towards breast tissue but instead it has moved towards my sternum and on top of bone. Not pleasant! Makes me wonder how much "play" is on the lead into RA.Could the movement dislodge the lead? Not happy!! Thanks for replying

[bantam12]

This could be Pacemaker Twiddlers Syndrome where "the patient consciously or unconsciously" fiddles around with the pm and it gets dislodged, I would assume none of us should be seeing if we can get our fingers behind the unit ! I've had my pm about 18 months and although it is very near the surface and sticks out it doesn't actually move but depending on movement it does sometimes feel like it catches on my clavicle.

[Alison_L in reply to bantam12]

I'm now cringing at the idea of trying to get my fingers behind my ICD

[bantam12 in reply to Alison_L]

Me to 😬

[Nannyjenny in reply to bantam12]

I am certainly not in the habit of twiddling with it. It was just the way of explaining what happens.

[Alison_L]

Hi Nannyjenny. Yes, mine wanders around, but fortunately doesn't seem to catch on bones. It does have an alarming habit of "standing up" when I'm scrunched over on my right side in bed, and 3 years after it was fitted, I now automatically pat it back down when I turn over. xx

[Hidden]

Please don’t take this the wrong way. Speak with your cardiologist. But in the meantime stop fiddling with your pm 🤷

[Nannyjenny]

I can assure you that I am not in the habit of fiddling with it but sometimes it needs to be moved in order to stop pain and discomfort!!

[fantasyfanuk]

I totally agree Nannyjenny and so did the cardiologist when I discussed it with him. I don’t believe either of us fiddle with our pacemakers. They move on their own and it is so painful you have to just press it back into the normal position. Again the cardiologist agreed that is the best course of action in those circumstances. Plus I was aware of the documented tendency to fiddle so never did it. Most of the time I don’t think about it at all but if it hurts as badly as it did last night when trying to get to sleep, then I need to do something about it.