Pacemaker hurts!!

I had my pacemaker surgery 8/31/2023, I have told my doctor at every visit that it hurts and it's not in the same place as it was, he completely ignores my complaints, the nurse writes everything I say about the pain but after the visit the doctor writes patient has no complaints. I even have someone with me at each appointment that knows I have mentioned this many many times. Now it feels like an area is going to literally poke through my skin, it was never like this before, I know most likely it will not but that's what if feels like, I have to be careful of the way I move, cannot stand bras, seatbelts or anything that applies pressure on it at all. I also feel some pain in my left arm like across where the pacemaker is. My family doctor felt it because I was so frustrated that I'm not getting answers and he told me that it is about a quarter inch away from my collarbone and I was feeling something catching, he said it was the scar tissue he feels is catching under my collarbone but at that time it wasn't popped up like it is now, I just don't know if this is normal, my cardiologist really has a "God" complex and is extremely difficult to talk to. I am regretting having this thing put in me. I had bradycardia with a heart rate in the low 40s and had started passing out. When I first saw this cardiologist and I was telling him all my symptoms he looked at me and said "you know You're not giving me any choice here" I said what is that supposed to even mean? He ignored that question. I just sent a message today and sent pictures and explained even though chest X-rays may be showing the pacer is in the correct place, this is my body and I know when something is different and I definitely did not feel this sharp area that has popped up. He said originally I would have pain for 6 months, well, 6 months is coming up and the pain is only getting worse. It's not red, it does occasionally itch, now the incision is popped up on the side and divets in, it's just odd. Anyone else have this issue? The pacer is working, one visit I heard the tech tell the cardiologist some number was high after it was tested and he walked out the door but came back and said what number, then when she repeated it he said, it's fine. I was going to switch cardiologists but apparently the practice I'm at, they will not allow me to see anyone else there and this is the only practice in my area that takes my insurance and I can't travel 80 miles to see a cardiologist. I'm just a wreck! This has truly been a terrible experience for me, yes, I do have way more energy but I'm constantly in pain and worried about this pacemaker. Any comments, suggestions, etc would be greatly appreciated! 

7 Comments

Ask your general doctor for help getting a second opinion

by Gemita - 2024-02-17 03:51:48

I see your pacemaker implant was in August 2023 and that you are still not comfortable.  It would appear that confidence between you and your cardiologist has broken down and I would be looking for another doctor who will listen and try to help you.   To be constantly in pain which is clearly not controlled is unacceptable without any explanation and a plan of what can be done to relieve your symptoms?  Some of us may ultimately need our devices repositioned and in your shoes I would be asking whether this is needed?

You state the device feels like it will break through the skin.  Keep watching for any signs of the device actually coming through the skin, or for any signs of worsening inflammation, swelling or for any oozing coming from the pocket wound area.  If this happens you will need to go to the emergency room since an infection would be very serious and need urgent treatment, perhaps even complete removal of your entire system.

My implant area felt uncomfortable for months and I had to keep the area well protected with extra padding.  I also needed some neuropathic pain medication for 3 months or so to help with sudden intermittent electric shock like pulling sensations in the chest, upper back area due to nerves/blood vessels getting traumatised during lead implant.  

Your family doctor sounds caring.  Perhaps you could ask for help to see another cardiologist in the same practice?  That is all I can suggest.  Clearly you cannot go on like this without trying to help yourself.

switch to new doctor

by new to pace.... - 2024-02-17 08:04:52

Unfortunately  at least where i live in the US one cannot switch to another doctor in the same practice.  Unless the first doctor gives permission to switch.  Tried first in my GP's office, Orthro Doctors and Cardiologist's office. 

new to pace

A good patient/doctor relationship is important

by Gemita - 2024-02-17 09:41:31

Charbookles, I would perhaps start by writing formally to your current cardiologist, with the family doctor’s help, explaining quite simply that since there has been a breakdown in trust, confidence, respect between you, could he kindly consider referring you to another doctor in the practice for a second opinion?  I cannot see that he would refuse.  I wouldn’t if I received such a letter.  If he does, then you will have your answer and you will need to go elsewhere and be all the better for it, i suspect.

I was referred to another cardiologist in my large teaching hospital.  I never looked back and have since made good, steady progress with my heart condition and pacemaker.  I would go for a second and even third opinion if I had to. A good relationship with our doctor is essential for all concerned.

Hugs

by Lavender - 2024-02-17 09:56:37

I have read your posts throughout this site. Thoughts that came to mind:

My first cardiologist was dismissive of me. She was insulting and rude. She treated me as if I was anxious and childish. She actually told my boyfriend -in front of me-to slap me if I get anxious. Feeling intimidated, I was submissive for many months. I had pain from the pacemaker and surrounding muscles and left arm for seven months.  Finally I sought help from a therapeutic masseuse. It took a few times but she got everything loose again. 
 

I eventually got angry enough to confront the cardiologist. I calmly told her step by step how her behavior affected me. She actually listened and got off her stool and hugged me. 
 

Thankfully it was the last time I saw her because she left the practice.  I often wondered if I had broken her. She was one of the two founding members of the group. I'm blessed in that I now get to see the other cardiologist. He is compassionate and reassuring, as well as so intelligent!  I found out that my original cardiologist was detested by many but was tolerated because she was so good at her profession. 
 

I switched pcps in my group too, years ago, because the original guy I chose told me I was fainting from anxiety.  Truth was bradycardia. 
 

Sometimes we do get anxiety but sometimes the anxiety comes from not getting help and not being heard with sincerity. 
 

You already said you can't change cardiologists in your group. I would press that a bit. I'm sure it's been done. Also insist on being heard. You already had Xrays that show that nothing moved, I think. Your device is working perfectly. See if you can be referred to a pain management specialist. Ask what they can do more at this point. You can't be their first patient with this problem.  
 

 

Persistant pain

by Julros - 2024-02-17 12:33:54

Hi Char. 

Your story sounds much like mine. I had persistent pain, couldn't stand anything touching the site. The only anwer I would get when I complained was "well, it doesn't look infected". It was so sensitive that the pacer tech just brushed the edge once and I cried out in pain.  At the 6 month mark I was told they had nothing more to offer and i was referred back to my PCP, whose answer was medical marijuana. I ended up changing to a cardiologist 80 miles away, and what a difference. I was listened to! Its inconvinient, but I only have to see here once a year, and the travel is well worth it. I also changed PCP. 

I did do some physical therapy that helped reduce the swelling and eased the pain. I took neurontin for a while, but the side effects were unpleasant. I've done a lot of mindfulness exercises, using an app on my phone, to help me move past the anger. 

 

 

get a new doctor

by Tracey_E - 2024-02-17 21:34:28

It's possible to reposition it so that it's more comfortable. I would not trust a doctor who ignored what I say. 

maybe worth the drive

by PacedNRunning - 2024-02-24 01:30:45

I'm sorry.  I have aches occasionally from my device but nothing nearly as bad as you are describing. I think we all do to some extent but Ive seen many get repositioned because they just landed in a sensitive area.  It sounds like it's too close to your collarbone.  I personally would find another doctor. We shouldn't live with pain nor deal with it if we don't have to.

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