Unhappy with my pacemaker

[Hdev]

13 months ago I got a pacemaker after 2 years with my EP pressuring me to have it done to counteract a low pulse due to being on beta blockers for afib,,,,well,, my pulse is better and I have more energy moving BUT,,,that’s where my positive experience ends,,,within 2 weeks of the implantation I developed a compressed nerve in my neck just under the clavicle where the wires from the pacemaker run,,,I get a jolt of pain numerous times daily when I move my neck a certain way and have feelings of “bugs” crawling on my face,,,my EP says the pacemaker has nothing to do with this,,,,within the next 3 months,,,a checkup revealed that the lead wire in my ventricle had dislodged and was just hanging loosely,,,but the EP says he doesn’t need that wire to pace me so it’s fine just hanging there,,,now,for the best,,,,I got a sudden sharp stab of chest pain followed by immediate gasping for air while walking down the hall in my house 5 nights ago,,,had to sit immediately and just could not catch my breath,,,a trip to the ER and immediate cat scan revealed multiple thrombi located on the 2 lead pacemaker wires where they enter my heart,,,a clot had broken off and gone to my lungs,,,,now they tell me that should not have happened,especially since I have been on warfarin past 5 years and warfarin is the very drug that is best at preventing such clots,,,so,,,now what? They have increased my warfarin to reach an INR between 2.5-3.5 rather than the 2-3 range I have maintained these past 5 years,,,this is supposed to eradicate the remaining thrombi and keep me safe,,,really?? I am not happy and truly wish I had never agreed to a pacemaker,,,,I have been fortunate to have only 4 afib events in the past 5 years so it seems well controlled for now with my beta blocker and warfarin,,,,the EP says too dangerous to remove the pacemaker unless infection were present too,,,,I am interested to hear how others feel about my experience,,and what has your pacemaker experience been like? Thank you for reading through all of this ,,,I am a 75 yr old lady already dealing with debilitating spinal stenosis and just dismayed at this turn of events,,,,comments,please!

[CDreamer]

Firstly so Sorry to hear of your distress. I wonder if the spinal stenosis is a factor her re your nerve pain?

So really you are asking about two separate issues - clots & anticoagulants & placement of pacemaker.

Anticoagulants reduce the risk of clots forming, - they don’t eliminate the risk. Were you given treatment to bust the clots or were they considered not a risk? Clots will be dissolved by the body naturally eventually but the risk is always if they break off and travel so may need monitoring.

What advice were you given? I have no experience of Wafarin as I take DOAC and not had any difficulty.

My experience of Pacemaker has been great & improved my QOL, however, I did need a revision as.my LV wire wasn’t attached correctly & triggered diaphragm so had to be switched off and I had to wait 6 months for the revision & removing & replacing of the wire - which by then was absolutely on the limit of what can be done so I imagine that at 13 months it would be far too dangerous to remove the wires now in your heart as they will be embedded into tissue.

No ethical surgeon would risk a procedure they didn’t believe would do anything other than bring benefit however opinions differ. Can you ask for a second opinion from another specialist?

One of the problems I had was that the original placement of the RV lead was a botched job & the implant caused a lot of scarring around the tissue which disturbed some of the soft tissue around the shoulder causing some discomfort. The surgeon who did the revision was top notch & removed a lot of the scar tissue which had built up around my clavicle and things have been much more comfortable ever since.

So in conclusion, you could have the PM removed but as I understand it, not the wires. I expect they would only do that if there were a risk to your health.

I note you are in the US so I don’t know how your service works but here in UK you can refuse treatment but cannot demand treatment. I believe that the oath doctors take is based on the principle - first, do no harm.

I am not medically trained and only advising on my own experience. Maybe someone with more knowledge may chip in.

Best wishes

[Hdev in reply to CDreamer]

I appreciate your input,,,,I’m being treated by taking increased warfarin daily,,,early yet to see if that will do the trick and dissolve the remaining thrombi,,,,the clot was small enough not to have killed me and so are the others, at the moment but they can enlarge over time,,,,I assume they will be monitoring me to see how it goes,,,I will be doing a follow up appt with the. EP group when I call,for an appt tomorrow,,,I guess I’m partly distressed because no one ever mentioned watching out for this and I gather it is not uncommon,,,just another risk when you fix one thing and that causes another issue you didn’t have before,,I am not looking for endangering myself with a pacemaker removal but still not so relaxed about having it there,,,,thank you again,CDreamer,,,so nice to always hear from a fellow afibber from across the pond,,,Be well!

[Barb1]

What an awful, awful experience. I so feel for you.

[Elfiejean]

I have had no issues with a pacemaker. Sometimes I get a sensation at the sternum of heart beating. No pain just sensation. They were not impressed. I hope the placement is good. It is better than a heartrate of 36. Sometimes electrical activity in my heart stopped then restarted. Thank God I didn't know. Complained about low heart rate for over a year. They said all was well. Then one day after the Holter moniter week they hit the panic button and really stressed me out. Guess I got lost in the patient shuffle. I hope they get you sorted out. I understand your anxiety.