Nerve Pain Around Pacemaker

I'm scheduled to see my cardiologist in September to discuss my pacemaker replacement. But I'm having so many issues with nerve pain around my device. Last year, they had to up my voltage due to one of my leads being old and not working properly. That in itself is uncomfortable, but the nerve pain started in December and has steadily gotten worse. At this time, it hurts to touch the pacemaker area (especially under the collarbone where the leads are implanted in the vein), lift my left arm and the nerve pain is in my neck and runs down my arms. Has anyone else experienced this? I've had a pacemaker for 17 years and never had this issue, so I'm assuming it's the higher voltage. I've also been more physically active lately. I usually walk and do yoga, but have recently started jogging and lifting weights. Maybe that is contributing? Is this kind of nerve pain normal or should I call my cardiologist about it? I don't want to overreact, especially since I'll be going to my cardiologist in a few months. 


3 Comments

Call your dr

by Lavender - 2022-06-29 09:25:10

I'm struck by your comment that you don't want to over-react. Why is it that we put up with crap so long?  I'm of the generation who always went to school and work even if I felt not great. I rarely complain to any doctors. I feel like I should suck it up and wait it out. I've also been intimidated by a former pcp as well as my cardiologist when they impatiently addressed my complaints and dismissed me as being anxious. Ugh I switched pcps, and ended up insisting on a thirty day monitor after six months of the cardiologist telling me it wasn't my heart.  I ended up "dying" on my livingroom floor-wearing the monitor. My boyfriend managed to unknowingly do a precordial thump which revived me after a thirty-three second heart pause. The monitor I had insisted on and fought for caught this ventricular standstill. I got my CRT-P within days. I understand it's a hard thing to catch and thus many die before it's diagnosed.  Having fainted six months with two of those events as near death experiences, I no longer am intimidated to seek answers and push to advocate for myself.

You've been dealing with this for six months already! Now you're thinking of waiting another three. You deserve attention and answers! You're used to having a pacemaker and this is new-so it should be investigated! Knowledge is power. Once we know what we have to accept and what can be fixed, our anxiety goes down. Let them rule out infection or any other reason for this. 
 

I have only called my cardiologist three times since my pacemaker was implanted in February 2021. Twice it was due to near-fainting and once it was due to feeling the strong vibrations which woke me. I do not quickly call. But when it goes on, I feel we need expert advice and at least reassurance. The third call, the cardiologist screamed at me. She said my monitor will watch over me. She told me if I don't believe her, she will order an echo and a pacemaker check. I told her I want no unnecessary tests. I'm new at this pacemaker stuff. I needed answers. She bristled that I questioned her expertise and said I was disrespectful. I was intimidated and vowed to never call again. 
 

Next pacemaker check, I asked the pacemaker tech about my complaints on vibration sensation. She assured me that others have this as well. She took extra time explaining things and testing the leads. 
 

I finally flat out confronted my cardiologist after the tech left the room. I told her I had fear about the vibration since it was a new and unknown sense-and I do not want to be intimidated when I have questions. She said I had repeatedly called. I told her it was only three times, spread apart by months, and it was based on a new sensation. I told her was thinking of switching drs and offered to do so. I wanted my concerns to be answered and not to be yelled at that I was anxious!  She checked my chart and call log. Amazingly, she listened. We both explained ourselves. She actually hugged me. She is so militant and focused on bodies that she forgot there's a mind attached to me that needed to know more. I can deal with whatever but need to first tell a professional and have it explained and investigated. I'm the type of person who doesn't blindly trust. 
 

Call. If you have to live with it, so be it. At least you will not be wondering if you should call. 
 

I had a lot of left arm pain and neck pain. My neck would sometimes get a sharp zing up the left side. It hurt up over that shoulder and down the back. I know they cut and sometimes a nerve is pinched or damaged. The area where the leads went in used to be sensitive. That's all calmed down now. I see a licensed massage therapist twice a month. She keeps me going. It's my time of healing and relaxation as she works the knots out. It's a luxury that costs less than my cable bill. (I recently cut the cord and shut off cable. Streaming now and using an antenna-love it.)

Don't be intimidated. Seek answers. It's wearing on your peace of mind. ☮️☺️

"Focused on the body"

by AgentX86 - 2022-06-29 14:59:28

Lavender,

Your intuition was right.  Find a new cardiologist.  A doctor should NEVER scream at a patient.  If he can't do any more for you, he can always fire you (just as you can fire him). If she's so concentrated on the body that she can't see the person, she has no buisness in medicine, at least the human face of the profession.  Let her be a surgeon or an administrator os something but she has no business seeing actual patients!

Your point about being your own advocate is right on.  Even the best doctor can miss things.  They're not you, they've not been on the other side of the pacemaker, and they don't live your life 24/7.  They can't know you as well as you do.

My cardiologist didn't do anything about dizziness episodes I had every month.  He simply didn't have an answer.  It went on until I collapsed in a full-on siezure. He was all over himself for not seeing it but he was looking for heart issues.  He doesn't deal in brains. It was likely caused by clots from thrown because of AF years before, though.

Doctors aren't perfect but there is no excuse for them yelling at a patient.

Nerve pain and pacemakers

by Selwyn - 2022-06-29 16:23:26

You may want to read the survey of our members with regard to pacemaker pain. 

https://www.dropbox.com/s/5rlm7ot7squtkb2/Pacemaker%3AICD%20%20Pain%20survey.pdf?dl=0

There is no saying your pain is due to your pacemaker. It sounds that it has a mechanical origin, perhaps from a trapped nerve in your neck?. Worse when you lift your arm etc.

I think I would see someone about your neck before making a connection to your cardiology.  There seems to be little point in suffering further by a wait for a cardiologist, especially since you have had a PM for 17 years without problems. I proper medical examination should easily establish the origin of your pain.

 

 

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