Leadless Pacemaker Micra complications

Hi folks, I have suspected ARVC gene elusive. A mild cardiomyopathy (enlarged left ventrical /45 EF) with PVCs and have a S-ICD for primary prevention. I am on bisoprolol, candesarten and apixibam. I'm 42, relatively fit www.DamoBird365.com/myheart.

I was put on Amioderone for ectopics on Nov 22 in prep for ICD extraction due to SVC obstruction, operation was Jan 23 and I developed AV block and collapsed in Feb 23. I had a micra pacemaker installed and stopped amioderone.

Soon after the procedure I noticed my chest feeling sore and this developed to significant pain overnight which begins to clear when I'm up and about. My Apple Watch demonstrates split pacing at 40 bpm and 75bpm during sleep, but not during day.

My local hospital took me off of AV pacing and stuck me on V and my chest pain reduced but within weeks I had developed significant neck pain (mainly whilst sitting at a desk and less so when actively walking) and was sent for a venoplasty (as I have previously suffered from SVC obstruction). My SVC was clear.  My Pacemaker was returned back to AV but at the same time min pacing dropped to 35 (from 45) and a timing changed 20ms (I really wished I had watched what was happening with the timing).
 

I'm now back to significant chest pain. I'm taking paracetamol before bed on their advice but the pain is genuinely unbearable. I took no meds post S-ICD or Pacemaker op, I have a very good pain threshold. 
 

I read the Micra AV guide and it has a sleep mode - rate hysteresis - has anyone any experience of this or indeed my setup and symptoms?

My pacemaker clinic have told me I need to decide what symptoms I can live with, chest pain or neck gorging. They tell me there is nothing they can do. I am at liberty to a device that isn't working for me and locally we have no experience of the device, I am one of the first to have it installed here and they had basic training from Medtronic on me. They've done holters on both modes and have discussed locally but I feel the manufacturer needs to be consulted and to correlate findings with wider experience.

I'm in Scotland on NHS. Private gets me no where locally as it's the same cardiologist and there is little choice but ultimately I just want to feel reasonably comfortable.

Any thoughts on my setup and chest pain and options?

 

4 Comments

ARVC - Arrhythmogenic Right Ventricular Cardiomyopathy (rare disease of heart muscle)  

by Gemita - 2023-09-18 06:42:51

Hello Abdndamo, 

You should not be feeling the degree of pain you describe.  You need urgent help.  I have just briefly checked your link.  So inspiring.  I can see that you have an E-bike and want to continue exercising.  

I am concerned to hear about your significant chest pain which you say is genuinely unbearable at times.  This needs immediate assessment in my opinion in an A&E department or in a centre of expertise like a chest pain clinic.  This is not the time for you to be trying to understand what might work by changing a Micra setting.  You need relief now for your pain and a proper diagnosis. 

If you cannot get an answer and resolve for your pain in your current location, I would ask where the nearest expert centre is that could give advice and hopefully provide relief for your symptoms?  

You are correct, a manufacturer representative needs to be present during any consultation.  They will know their own product best and if your symptoms are caused by their device, they may try to make urgent adjustments or offer other solutions.  In view of your complex medical history, I would seek help quickly for your own safety. 

I cannot help personally with your leadless pacemaker because I have a dual lead Medtronic pacemaker.  We do have several members with Medtronic Micra leadless pacemakers and I hope they will see your message and comment too.  Please keep in touch and stay safe

second opinion

by Tracey_E - 2023-09-18 09:14:47

Can you travel for a consult with someone who has more experience with the micra? Seems like lack of experience with the micra is the root of the problem. I don't think you should have to choose between two bad options! 

My options

by Abdndamo - 2023-09-19 14:35:08

I've been told we're going to increase min pacing to 60, think about drugs and/or ablation and then contemplate an open heart pacemaker op. In that order. I do think a 2nd opinion is a good idea, it's just a nightmare to find here. I don't know if my problem is ARVC or PVCs or devices.

Your options

by Gemita - 2023-09-19 16:18:08

I am sorry you are in this position.  

Your options? It depends how much pain you are in since you say you are experiencing “unbearable pain” at times.  No one likes going through A&E but sometimes if you attend often enough they can get you referred more quickly to another hospital/doctor for a second opinion and to get you an urgent appointment with the device manufacturer/technician for some thorough checks and adjustments if the problem is your device?

Raising the minimum (lower rate) pacing limit to 60 bpm may help with PVCs but I am not sure that it will help with your pain, although PVCs when prolonged can certainly be uncomfortable.  You are already on Bisoprolol as a medication to help calm the PVCs and I see you are taking anticoagulant Apixaban. 

Did they mention whether they wanted to put you back on Amiodarone before proceeding to an ablation for your PVCs?  Have you had any scans (like CT/MRI) of the chest?  i would want to be absolutely certain of the cause for your pain before accepting any further treatment.  Your  ARVC, PVCs and/or other arrhythmias certainly won't be helped if your device is at fault and causing your intermittent chest pain.  I hope you get help quickly

 

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