Pacemaker..burning sensation

[kathie659]

Thank you for replies...After reading comments, I opted to do 2 things 1) extensive blood tests (all negative for infection) 2) Buy sports bras to wear to bed. Bras worked...I advised my cardiologist of this, so hopefully others won't have to worry about very real pain.

Pacemaker implanted in March 2022. All went well. Minimal discomfort for 2 weeks. Approximately 2 months later, I began experiencing a burning pain on the area around it. It appears swollen. Saw two doctors who ordered several tests to check for infection. None found. Has anyone else experienced this type of pain or have ideas in what may be causing it? Pain is severe and wakes me up some nights.

[pottypete1]

I can suffer from acute urticaria when wired up to heart monitors for any amount of time.

At the same time My EP wants me to have a pacemaker and I have been resisting it until they can prove to me that there will not be an allergic reaction.

I have researched this phenomenon and there is case history where infection was suspected but not proved and ultimately they discovered it was a rare but real possibility that it could be an allergic reaction to the pacemaker.

In such cases a gold plated pacemaker was used with polyurethane coated leads rather than titanium and silicone coated leads.

As they cannot find infection in your case maybe you should suggest an allergic reaction to the Doctors.

In my case they are still trying to assemble all the relevant components of the pacemaker to patch test me but after 2 years this is still proving very difficult to achieve.

Pete

[kathie659 in reply to pottypete1]

Thank you...this could be the case...i am allegic to several materials and drugs...

[opal11uk]

No, not after a few weeks, it all settled down, my suggestion is to back to the doctor and ask for it to be investigated further.

[Hidden]

Absolutely no issue with mine, completely unaware it is even there. Definitely needs looking at.

[CDreamer]

No, mine was fine, sounds very uncomfortable and unsettling. I was very interested in PottyPete’s reply as you may have your answer there.

[pottypete1 in reply to CDreamer]

Whilst my AF episodes are at an all time low (once or twice a year now) my slow heart rate makes any physical activity difficult. I can go walking but I run out of energy very quickly.

I have read your accounts of how good your pacemaker is and I hope that sooner or later my EP & Dermatologist can get some conclusion on the testing of my allergies. I am allergic to metal such as nickel together with about 100+ other various chemical and products.

I am 75 now so they had better hurry up.

Pete

[Beejaysee]

Hi Kathie - sorry you’re having problems with burning and discomfort around your pacemaker. I have no medical training, of course, but had a similar experience with my pacemaker 3 months after implantation - I’ve attached below my post from earlier this week (which I think I put on the wrong forum 🤔)

“First post - hi everyone

Saw my GP on Friday as 3 month old pacemaker was red and sore (not the wound but the PM site).

He referred me to my cardio who brought me in to hospital right away and removed the PM on Saturday as the pocket was infected and am now on IV drip waiting for new PM implant today (Tuesday). Had thought infection risk was gone after 3 months with only issue appearing in the past few days , now have to have new PM on other side of chest as infected pocket can’t be reused. Worried about how I got infection with only signs appearing 3 months later and what if it happens again on the other side?

Anyone else had similar problem? Thanks for reading my post 👍”

Anyway, if my GP hadn’t emailed my cardio and asked him for his opinion then I could have put up with the discomfort, puffiness and hot feeling around the site for some time - I was not displaying other signs of infection (feeling unwell etc). The cardio reacted quickly, brought me in right away and explained that I had a subcutaneous pocket infection and needed to remove the PM and flush out the pocket - there was a risk that the infection could travel to my heart and/or other organs if left untreated.

I’m now reassured that the infection has been treated thoroughly and my new pacemaker is implanted on the other side - with the usual soreness and bruising post-implant, but the heat and pain from the old site has gone (still got a stitched wound but no pain on the old site).

If it happened again, I would have no hesitation in demanding an urgent cardio check - or visit A&E and ensure their on-call cardio thoroughly investigates the problem. I realise how busy our wonderful NHS doctors are - however it’s their job but it’s your life.

Good luck