pain collar bone and fluid around heart and lungs


(apologize if my english is not 100% accurate but hope you'll understand)

I had got my pacemaker summer of 2018 with 1 electrode and second electrode implanted summer of 2019. The latter one was not fully attafched and scratzed on the heart so it was replaced 1,5 month later. 

since then i have constant pain in my heart and it cramps/feels like a knife stabbing me when i've been to active. I also have pain below my collarbone that rays up on my neck, cheaks and head in every breath and every step i take. I also get fluid around my heart and my lungs. The only thing that helps is prednisolon (but everytime i get of the meds it comes right back). I am also exhausted (sleep all day).

Doctors dont know what it is (been elimintating all kinds of things) but i think its connected to my pacemaker since it started after the second surgury...

have anyone else experienced this? If so, what have you done?


Pleural Effusion ??

by Gemita - 2020-03-05 12:43:21

I would go back to your doctors for further advice.  My husband had a PETscan following implant because he had similar symptoms to those you describe.  Anti-inflammatory medication was tried without success.  I see you have been on steroids too.  My husband eventually had to have fluid drained from his lungs which cleared the condition up for him and he is so much better now.

You should not have to bear this pain and discomfort for so long.  After any surgical procedure complications can arise but I would press for better imaging to try to locate the problem and to get a definitive diagnosis.  Have they ruled out any damage to the Superior Vena Cava vein?  Veins can get damaged during pacemaker lead placement.  I too get collarbone pain radiating up into the neck and I am presently having this investigated.

I do wish you well soon

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