Diaphragmatic/Phrenic Nerve Pacing – Case Study

Diaphragmatic/Phrenic Nerve Pacing – Case Study

In my previous post I explained Diaphragmatic/Phrenic Nerve Pacing. Very kindly one of my readers has agreed to share her story as a Case Study and it is accompanied with some quite remarkable video footage!
I would also like to say this is a pretty intense case of Diaphragmatic Pacing and as with everything there is a
spectrum from minimal to well… this! 🙂

Below Jenny W. shares her account….

My Cardiac History,

I was initially diagnosed with inappropriate Sinus Tachycardia and an AVNRT.  As a result of these arrhythmias my pulse was over 200 when I was asleep. Wearing out my heart and on oxygen at home the decision was made to go ahead with a ablations to treat both, which meant an open heart Sinus Node Modification.
They collapsed my lung to make room to operate and entered between my ribs. They ablated several areas of my heart whilst shielding the Phrenic Nerve. The resulting scar is barely 3 inches long and hidden under my breast.


Four months after my open heart surgery, my heart rate became too slow, I had gone from Sinus Rhythm to a Junctional Escape Rhythm. I also kept passing out every time I moved my arms above my head. After further investigation it was confirmed that I required a pacemaker.

First Pacemaker…

My original install was February 27th, 2012. Unfortunately I ripped my top lead out pulling my Godson out the ocean during a riptide. This led to a ‘reinstall’ on August 6th, 2012. My biventricular pacemaker is actually screwed into my heart, so I ripped my heart a little bit too!

Diaphragmatic/Phrenic Nerve Pacing

When did the Problem Start? Immediately. I let me doctor know by emailing him one of the videos and was called in for a device interrogation. We changed the settings but couldn’t figure out or resolve the issue completely. I went home and tried to live with it… but as you can imagine, this was exhausting!
What did it Feel Like? Like you started a motor. I had no control over when it would happen and it would feel as if I was suffocating each and every time. It’s also hard to look normal in public when you sound like you are hyperventilating!

What Triggered it? Everything! My kids tapping on me to ask a question, a hug, music (if it was loud enough) and even the vibrations of setting down a cup were travelling up my arm and setting it off!
At the Hospital…  The hospital reactions were mixed, from shock (fear of what it could be) to laughing because it was so strange. I could replicate it whenever asked.
They took me to the OR for Flouroscopy to check my leads. They asked me to fake sneeze and I set it off again. The Cardiac Technician from Medtronic was instructed by my doctor to reduce my threshold from 2.5 volts to 1.5 volts. Thankfully this worked a treat and now I am fine!

THE PAD would like to thank Jenny W. again for allowing us to use her videos and cover her story!

Have you ever had Diaphragmatic Pacing or something similar? then share your story in the comments section below 🙂

Further explanation around these topics and more is available in the book Pacemakers Made Easy by Carl Robinson.

Time to watch an episode of House

Cardiac Technician

Comments 1

  1. I have experienced diaphgramtic pacing two months after having an ICD fitted. I woke about 4am. with a huge thumping in my chest. I had no idea what it was, it was continual at this stage. I rang for ambulance and taken to small hospital where I live. The doctors didn’t know only that it was something to do with my pacemaker. After talks with my EP in Brisbane 700 is away I was flown by air ambulance . Afte 16 hours of this I felt as if I had been hit by a bus, I asked for a technician to turn the pacer off which they did. After X-rays it was found 2 leads had retracted and were coiled like chicken wire. I went back to surgery to have new wires inserted. My doctor was adamant that I must have done something to cause this and no argument from me would he listen to. I had not done anything that I was told not to do and now have found out that my ICD is affected with battery issues and I am being monitored. I believe the leads were faulty also. My appointment to see my EP is the 14th December 2016.

Leave a Reply

Your email address will not be published. Required fields are marked *