A pacemaker and a pain in the neck!

[Hdev]

I had a Pacemaker put in March 2021 and by early May developed a pain at the base of my neck on the left side only,,,,my primary care MD ordered an ultrasound which showed 2 enlarged lymph nodes,,,I was told to wait 6-8 weeks and they should disappear,,,that did not happen,,,I was sent to an ENT MD and he thinks it’s just inflammation and wants me to take a course of steroids,,,but he is not sure it will help,,,I also saw the pacemaker doctor who felt my neck and said it had nothing to do with the pacemaker wires,,,the pain has gotten worse and it’s almost 5 months of this,,,it’s a pinch now and then when I move my head and there is pressure like my neck will burst over the carotid artery,,,has anyone heard of pacemaker wires gravitating and moving ? I feel as if the wiring is caught in my neck artery,,,the md says this is not possible,,,,sleeping is an issue as I need to keep my neck perfectly even and not to the left,,,I am really concerned,,but no MD seems interested in finding out what is causing this,,,if it is not their area of expertise,,,they say goodbye and wish you well,,,I am very frustrated and concerned,,,any thoughts, please,,,thank you,,,PS I’m in the USA with excellent insurance

[jeanjeannie50]

So sorry to hear you have this worry.

Wouldn't the ultrasound have shown the wires if they had moved? I know absolutely nothing about pacemakers, but feel your problem has gone on long enough. Have you finished the steroid medication? If so and they haven't helped I would seek a second opinion at a different hospital. Could one of the leads be touching a nerve leading to the glands?

It's annoying how we have to fight our own corner for help these days. You certainly shouldn't be expected to just put up with the soreness.

Please let us know how you get on. Hopefully other members of this forum who have pacemakers will see your post and give some helpful opinions.

Jean

[CDreamer]

Hi so sorry you don’t seem to be getting the medical help you think you need.

I’ve never heard of pacemaker wire migrating and having to have a wire replaced which believe me if they have been in your body for more than a few months is not an easy or comfortable procedure as tissue grows around the wires anchoring them for good. I would never say that it would be impossible because I don’t know enough about it but I think I would believe your cardiologist because the wires are threaded down into the heart and go nowhere near your neck. The easy way to check is x-ray.

Enlarged lymph nodes usually indicate inflammation and become swollen due to infection or something going on with your immune system. That could have some connection to the pacemaker insertion and certainly many of us with pacemakers have had problems with inflammation in the shoulder simply because of where the pacemaker sits there is so much soft connective tissue. A minor infection?

A short course of steroids might be the way to go if your doctor is sure it is inflammation but things don’t become inflamed without reason.

Have you had a respiratory infection in the last few months? The first thing I would do is ask your doctor for the blood test results which I am assuming would be the first thing they would do? Any infection would have shown up as a rise in some cells counts.

I certainly resonate with your frustration about doctors not being interested in finding out what is going on unless very obvious which is why I ask dual trained Integrative Doctors who I have found are always far more proactive in looking for cause and treating stuff that many other doctors just shrug off because it’s not their area of expertise. My MD doctors took 5 months to diagnose a rare autoimmune disease which my Chriopractor diagnosed in a few hours and a simple test at home.

Hope you find answers.

[GrannyE in reply to CDreamer]

Seems like a very sensible answer

[Golfer60UK]

Well good morning from sunny England, at the moment that is,I like yourself had a pacemaker fitted this year and have developed a stiff neck on the right hand side. I can not turn my head to the right as it is painful.

However I have also passed out for a few seconds.

The pacemaker has been checked twice and both times was told nothing to do with the electrics, but there is a suggestion it may be due to a trapped nerve in the neck so I am off to see a Neurologist.

I must say after the pace and ablate my quality of life is pretty good with golf three times per week with no bad effects. I am 76 and feel its important to keep active

Best of luck

Dave J

[resqme1065]

I too have found you have to fight sometimes to get a specialist. Or a Dr. to listen to you. Really listen, I had an ablation only to be told about 2M thereafter that My mitrovalve prolapse was causing afib. I had a mitral valve ring placed and another abalation. I had quite a few issues for over a year, placed on quite a few meds. I don't know why, but it finally subsided. My last constant afib episode lasted about 2 wks and was constant. This was 3 years ago. Rarely have episodes since.

I sure hope you find the help you so need. Keep fighting! I would have it removed personally. Hope to never need one!

Judy