Dual chamber pacemaker fitted twelve days ago and in constant pain

Hi everyone.

This is my first post and I'm so relieved there is a place in this global IT  world to share pacemaker problems.

So ...

I’m twelve days post operation with a dual chamber pacemaker.

The operation/procedure was brutal. Not enough local anaesthetic and feeling the cuts and messing around to feed the leads to the heart then create a pocket for the device.  

(I’ve had a number of previous  operations to include four Caesarian sections. A  lower leg emergency operation last year to put the deep layers of skin together was the start of it all,  concerning lightheadedness  causing fall, pre syncope  then  long-standing bradycardia. All painful but, a big but, lessening pain over fourteen days... for all operations.

 None of the described recovery pain compares to what I’m feeling now.

I returned  home  on the same day with pain almost masked by the local anaesthetic.

Despite being very careful re lifting arm, the pain was awful after the local anaesthetic  wore off and taking loadsa paracetamol. Worst pain was when getting into a lying down position ( can only sleep on back atm) then getting up. The pain was, is, terrible.

Had to return to hospital after four days  because of the ongoing pain and swelling. The doctor who did the operation decided I had haematomas around implant site. A compression bandage was applied,  bloods taken for possible infection then sent home.

By day nine, back in hospital. Yet another compression pad and prophylactic antibiotics in case of infection, though none found on blood tests.

I am really frightened about what is going on in the ‘pocket’ Went into hospital twelve days ago feeling OKish. Now feel like an alien is trying to crawl out below my lower left collarbone. When I get up, very carefully, from in bed position the pain, despite paracetamol is just bearable. Have to hold onto my padded area though. Without pain relief, well, just feels like a sloshing about ‘I almost can’t bear this’ Eventually, everything settles down to a bearable low pain, only felt more of when my husband drives over a pothole in the road. ( I live in the U.K. and there are many of them!)

Plus, I also wear  a Garmin watch.  Prior to my op, and for over forty years, I've been able to run ultra distance, cycle and swim, not atm obviously.

My Garmin watch records resting overall and current heartbeat.  Current average  resting heartbeat is 45 bpm after twelve days. I believe my lower range was set at 60 bpm by the pacemaking  doctors.

Do you think one of the leads has come loose? Has anyone experienced a similar situation?

Is it normal to experience this ongoing pain?







Pacemaker Pain

by Fantasyfanuk - 2022-11-29 18:44:58

Hi Mayla, sorry to hear you are having so much pain. I had a dual chamber pacemaker 5 years ago and this was replaced 3 years ago with a three lead CRT--P device. Both times I had a lot more pain afterwards than was expected and also found the procedure brutal and painful, due to local anaesthetic not being totally effective and sedation not working. I really sympathise with how you are feeling. 

I went to the GP and back to the hospital but the doctors said the pacemaker was working properly and assumed I was just anxious, which I wasn't. I couldn't persuade anyone medical that the pain was pretty bad. I had to sleep propped up for weeks with my hand pressed over the device to stop it tilting sideways in the pocket. And press on it while out in the car. That did help a lot but I couldn't go back to work for about 6 weeks I think due to the pain. A good gp I finally saw told me that every time it moves in the pocket, it disturbs the healing process and although the pain did gradually lessen it was quite a few months before it improved much.  I did not have any lead displacement issues and the pacemaker continued to work, it was the nerves settling down very slowly that seemed to be the issue. That was how it was for me and of course it may be completely different for you. I do hope it improves soon for you. 

Sending peaceful prayers

by Lavender - 2022-11-30 09:47:19

I'm sorry to read of your situation. Of course what you describe is out of the ordinary and not at all commonplace for those getting pacemakers. 

You're seeking help from professionals. I'm sure your pacemaker has been xray'd and interrogated which would reveal any issues with leads. Stop checking the Garmin watch. Let the cardiologist tell you what your heart is up to. 

This just may take extra time to settle down. It won't always be this way. Better days are ahead of you. When we worry and get more anxious- it intensifies the pain sensations. 

Try listening with headphones to music that you enjoy. Listen also to YouTube meditations by Michael Sealey. Lie flat on your bed. Put a pillow under your knees to prop them a bit. A warm blanket helps as well. Darken the room. Focus only on the words you hear from Michael. It will teach you relaxation techniques. Mind over matter. Your brain is so wired that it can override pain as it focuses on something else. 

May the God of all healing bring peace to your body and mind. 🌸

The trials of a new pacemaker

by Gotrhythm - 2022-11-30 15:31:29

Sorry to hear you are having such a hard time. With my first pacemaker surgery, I had almost no pain, so I was very surprised when it was replaced to have severe burning pain, especially bad, as you have described, when rising from a reclining position. Like you I had to hold onto the bandaged area when I tried to move.

All I can say is that after almost 8 weeks now, the pain is all gone. Only a little soreness right on the outer edge of the incision. The shoulder harness of the seatbelt seems perfectly positioned to catch it every time. Most of the time, I don't know it's there.

About the Garmin data. I know little about the smart watches or how they work, but I've understood that they sometimes give confusing data if you have a pacemaker. Have you tried taking your pulse manually? You can count a pulse at either your wrist or neck.

You should be having your first pacemaker check soon. Be sure to ask the tech about your heartrate. He/she will be able to see on their monitor exactly how often the pacemaker is pacing.

Hang in there. It will get better.


Ongoing Pain

by Julros - 2022-11-30 20:00:14

Your pain is real and you deserve relief, but hard to say when it will come. There was a poll taken on this site, and the data written up showing that pacer patients have more pain than doctors predict and pain control is often indequate. I also think women are chronically undertreated for pain and not really heard. 

I underwent something very similiar during my first implant. I had  great deal of swelling and the only advice I was given was to use ice. I had an ultrasound of my arm to look for a clot, but it was negative. When the clinic nurse removed my dressing I was in tears. She alerted the nurse practitioner, but all I got was a shrug and "it doesn't look infected." I couldn't stand clothes to touch it, nor my bra strap. I continued to complain, and I found like you, that cupping my hand over the device to steady it was one of the few interventions that helped. Also, mild heat. At the 3 month mark I was directed to my GP who wanted me to use medical marijuana.  Finally, a physical therapy consullt and exercises usually done after a mastectomy reduced the swelling and pain. At 6 months it was still tender to the touch. 

Fast forward 3 years and I was advised to upgrade to an ICD. I hesitated because I didn't want to endure that pain, again. But I had a different surgeon, was given mild narcotics the first week, and what a difference! I was able don my athletic bra at 2 weeks and go for a run. 

I think I had a hematoma and nerve damage. Therapy helped to decrease the swelling and encouraged the nerves to heal. And perhaps the new device is in a slightly different position and not pressing on nerves. 

Thank you for your support and very useful information

by Malya - 2022-12-03 16:58:09

Thank you all so much for your feedback and support. 

Fantusyfanuk: You are so right. Nerve endings and the pacemaker  moving around in the pocket must truly delay healing in the early stages and so painful.

Lavender:  I love your user name and  it’s such a healing flower which I grow in my garden. I’ve practised Hatha yoga for over forty years and have benefitted from the meditative breathing exercises but will also listen to your recomended Micheal Sealey meditations.

Gotrhythm: Good point about the Garmin watch. As a former competitive athlete I was reminded by what you said in terms of doing a physical check re heartbeat. Those satellites are a little slow!

Julros: Your message is like a mirror image and I’m so glad you did not experience the same second time around.

So, I returned to see the consultant  yesterday who supervised the operation. He restitched the part of me that had been caused by the doctor who did the operation and who then didn’t notice that problem despite seeing me again three times since. Basically a skin tear joined to the primary incision for the pacemaker, which has healed very well, though still slightly swollen. 

I hope this all makes sense. 

Still taking antibiotics and still getting used to ‘my little friend’

It's been a rollercoaster two weeks and two days!

Pain and discomfort in the armpit area

by APS - 2022-12-07 23:28:09

Hi! I had a dual chamber pacemaker implanted 10/26/22. I also had a lot of pain during the implant and was awake during the whole procedure. Approximately 5 hours after the implant my chest xray showed that there was not enough slack on the atrial lead. So on 10/27/22 I had to go through the procedure again so more slack could be added to both leads. I was also having dizziness on occasion during the 7 days of post op. After my pacer was interrogated the Dr told me that the pacemaker was undersensing so changes were made to correct that. A few days after the changes I was extremely dizzy, having chest pain and palpitations.  I called the device clinic and had another interrogation. This time the pacemaker was oversensing.  Currently the pacemaker seems to be working great. However,  the pacemaker has migrated to my armpit area and is causing a great deal of discomfort and pain. I had a follow up appointment today and mentioned this to the Dr  he has offered to do a revision and move the pacemaker more medial. I am not sure what to do? Has anyone else had this problem? I would like to wait and see if this discomfort and pain get better over time but I am moving 3.5 hours away at the end of Dec. And I fear that another dr won't do the revision if things don't improve.  

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