By Martin Johnson, Champaign, IL. March 2018
With a post-script by Dr. Phillip Cuculich, Barnes-Jewish/Washington Un.

Martin Johnson

“My first A-Fib attack that I noticed, occurred in 2003 when I was 55 years old during a game of underwater hockey, an extreme sport requiring swimming under water while pushing a lead puck from one end of the pool to the other.

At first, I thought “well I did just swim 25 yards under water as fast as I could, so maybe this is just normal”. It lasted about 20 seconds.

The attacks quickly increased their duration to a couple hours each over the next couple months. I was forced to give up the game I’d been playing since age 37. I switched sports to softball, but that soon became impossible too, as I got an A-Fib attack every single game (but oddly, never at a practice).

A-Fib Progresses―Attack Just Sitting at Desk

For the first couple of years I only got attacks after physical exertion. As time went on, less and less exertion was required to trigger one.

I had my first attack without any kind of physical exertion while sitting at my desk at work. It scared me enough to see the local EP who recommended that I get an ablation. I thought that was too aggressive and instead started to try various drugs.

“My EP’s prognosis was―’ever more often, ever longer attacks until I would be in permanent A-Fib’”.

After going through 6 different drugs, most of which had no effect, one of which almost killed me and another that modified my attacks, I had no net improvement. My EP’s prognosis was “ever more often, ever longer attacks until I would be in permanent A-Fib”.

By 2010, I was getting approximately 24-hour long attacks approximately every four days plus occasional attacks triggered by physical exertion.

My First Ablation

I had my first RF ablation in July of 2010. I asked the EP if I should be in my natural A-Fib before the ablation, so that he could locate the problem cells. He said ‘no’. Instead, he induced A-Fib chemically. His approach was to isolate the PVs and draw several other lines in the left atrium. He then ablated the cells that he could detect taking part in the A-Fib that he induced.

He successfully got my heart back into Sinus Rhythm (SR), and was unable to further induce A-Fib. His OR report says that he expected this to have been a cure. (An O.R. [Operating Room] report describes what the EP did during the ablation.)

Two hours after the ablation, I was in A-Fib again.

In A-Fib Again―Leads to a Second Ablation

My A-Fib attack timing continued without letup— 24-hour-long attacks every 4 days. I agreed to a second ablation 6 months later.

The OR Report for the second ablation was essentially the same as the first, and so were the results. After both ablations, I acquired new arrhythmias that annoyed me even while not in A-Fib. After about 6 months, the new arrhythmias abated, and my A-Fib pattern changed to 24 hours every 7 days—a small but welcome improvement.

Over the next five years, the attacks became longer and more frequent— by Jan 2016, I had 45 hours of A-Fib every 7 days.

Third Ablation? I Needed an Edge

Still I was not optimistic about a third ablation considering my previous poor results.

Medtronic ECGI vest

I decided I needed an edge—something that might be able to find whatever oddball A-Fib cause made me difficult to cure. The one thing that stuck out in my reading was the Medtronic ECGI vest used in Bordeaux, France by Dr Haissaguerre and others. [See How ECGI (Non-Invasive Electrocardiographic Imaging) Works.]

The 256 electrode ECGI vest enabled the graphic display of the electrical activity of the heart passively and totally non-invasively. Unfortunately, Dr Haissaguerre’s office would not respond to any of my attempts to contact him. And I learned that the FDA would not permit the use of the vest in the US as part of an ablation procedure.

Travel to St. Louis Where the ECGI Vest Was Invented

It seemed that all doors to the vest were shut. After some investigation, I discovered that the vest had actually been invented in the US at Washington Un. in St. Louis, MO. In January 2016

“I volunteered for a study…that might help me get use of the vest in spite of the FDA.”

I called up the inventor’s lab to get as much information as I could. I volunteered for a study with the hope of making connections that might someday help me get use of the vest in spite of the FDA.

In January 2017, I went to St Louis and got a CT scan and a vest recording for the study I had volunteered for. While there, I noticed a Dr. Cuculich come into the lab to borrow a vest. I immediately thought, this is the guy I need to keep track of.

FDA Approves Medtronic ECGI Vest―My New Hope!

Then the next month, Feb 2017, the FDA approved a commercial version of the vest made by Medtronic for use with A-Fib ablation.

By this time, I was having 48 hour attacks every 4 days. I called Medtronic to get a list of who in the US had bought the vest and who had any experience using it. To my relief, Barnes-Jewish Hospital in St Louis was one of only four buyers, and Dr Cuculich already had experience using the vest on non-A-Fib applications.

Now that I had located a possible vest practitioner, I still had to resolve other concerns. In particular, even Dr Haissaguerre in France didn’t use the vest on paroxysmal A-Fibbers. He only used the vest on patients with permanent A-Fib. I don’t know why. I was convinced that being in my natural A-Fib and not in chemically induced A-Fib, was essential to find the real causes. I also knew that I could put myself into A-Fib by physical exertion.

Example of Contact force catheter (Biosense Webster)

Another Technology Edge: The Contact Force Catheter

Another technology that seemed important was the technique of dragging the catheter in order to burn a continuous line, rather than trying to burn individual dots. To help with this, a contact force catheter also seemed necessary. I first became aware of this due to a paper written by Dr Natale of Austin, TX. (see Resources below for article.)

A Concern: I Don’t Want to Lose My LAA

Another concern of mine was the insistence by some EPs to electrically isolate the Left Atrial Appendage (LAA).

“…in my mind…if the ablation worked, there would be no advantage to having closed off the LAA.”

During A-Fib, the blood in the LAA becomes stagnant, permitting the formation of clots.

But cutting off incompletely understood parts of one’s heart seemed exceedingly rash. Also, if the ablation worked, there would be no advantage to having closed off the LAA. So, closing off the LAA was just preparing for a failed ablation, in my mind.

About the Left Atrial Appendage (LAA)

What little is known about the LAA includes the fact that it is the source of heart stem cells needed for repair of the heart.

It was once thought that the heart cells you died with were the same ones you were born with. The latest belief is that about 40% of your heart is replaced during a full life.

This is a function I did not want to lose.

The LAA is also the source of a hormone which helps control blood pressure. The LAA also has a pumping function in parallel with the Left Atrium. And electrically isolating the LAA can often significantly reduce the contractile function of the LAA, thus making it a source of clots even when the heart is not in A-Fib.

Consulting Dr. Phillip Cuculich at Barnes-Jewish/Washington Un.

I called up Barnes-Jewish to inquire about my above listed concerns. Dr Cuculich called back and assured me that he was able and willing to meet all these requests:

1) Use the ECGI vest during ablation even though I’m paroxysmal;
2) To expect me to be in my organic A-Fib;
3) After getting me into Normal Sinus Rhythm, chemical induction of A-Fib was OK to track down more problems;
4) Use a contact force catheter and draw continuous lines rather than dots;
5) Leave my LAA electrically and physically intact.

Third Ablation―Running Up Flights of Stairs

The night before the scheduled ablation, I ran up and down a flight of stairs ten times which put me in my organic A-Fib in preparation for the following morning’s ablation.

On Nov 2, 2017, two Medtronic technicians fitted the 3-piece vest onto my torso. The ablation procedure took 5 hours—a lot longer than Dr Cuculich was planning on.

I woke up in NSR! The doctor noted that an A-Fib source in a pulmonary vein was active, but was already successfully being blocked by the ablation.

In Normal Sinus, But Short Bursts of A-Fib

Since the ablation 3.5 months ago, I have had about 15 A-Fib attacks totaling about 7 hours of A-Fib. [It’s not uncommon for A-Fib to reoccur during the three month ‘blanking period’ following an ablation.]

I believe every attack was triggered by drinking cold water. It took me a while to figure that out. I have not had an attack for the last month, during which I was able to remember ‘no cold water’!

Lessons Learned

For future reference: I read that Dr Cuculich was the lead investigator in a study of a totally non-invasive ablation procedure that uses the Medtronic vest to find the problems and ‘multi-beam focused radiation’ to ablate the errant heart cells.

I’m hoping that if my A-Fib comes back, that the FDA won’t have been as slow permitting this new method, as they were with the vest (see Resources below for link).

In light of my experience, I would recommend that no one get an ablation without the advantage of the Medtronic ECGI vest. Without it, the EP is only guessing.

Using canonical ablation patterns that might have worked on some group of A-Fibbers, or using the old fashioned way of dragging a sensing catheter along the entire inner surface of a beating heart looking for electrical anomalies, is laughable to me.

It’s no wonder that my first EP couldn’t find the A-Fib sources inside my coronary sinus and right atrium. I welcome your emails.”

Marty Johnson
martyj1949(at)yahoo.com

Comments from Dr. Phillip Cuculic

Phillip Cuculich, MD

“Thank you, Steve, for the chance to reply [to Martin’s A-Fib story]. And thank you, Martin, for sharing your story with the world. Brave patients and advocates like you are a powerful combination in today’s world of medicine.

Our understanding of any arrhythmia mechanism falls into two bins: the initiating event (triggers) and the sustaining circuit.

Over the past several decades, invasive procedures have identified common locations that harbor AF triggers, which is how pulmonary vein isolation has been an effective procedure to control AF for most patients. In general, we as a field have struggled in identifying reproducible non-PV triggers and the sustaining AF circuits.

One reason for our struggle is the tools with which we measure. A second reason is that each person’s AF is different, so the findings of one group of patients is not easily applicable to an individual patient that I meet for consultation.

Martin’s experience with noninvasive ECGI is a wonderful example of personalized medicine: treating an individual patient’s AF physiology. Credit for the development and clinical validation of this technology goes to the scientists, clinicians and industry development teams which include Dr. Yoram Rudy (Washington University), the amazing scientists who graduated from his lab, the intrepid clinical and investigational teams in Bordeaux, France, and the hard-working developers at CardioInsight and Medtronic.

Presently, thoughtful application of noninvasive ECGI is getting us closer to personalized AF treatment. Further development, testing, and refinement of the ECGI system is underway. While there is much more to accomplish in understanding the critical components of each individual patient’s AF, one cannot help but hear the hope dripping from the story that Martin shared.”

Editor’s Comments

I admire Martin’s tenacity in seeking his A-Fib cure after two failed catheter ablations. He educated himself about his disease and its treatments. Then he sought out an EP who would meet his needs, even drawing up a five-point check list to discuss before his third ablation. Well done, Martin!

Martin’s O.R. Report: Dr. Cuculich found all Martin’s PV’s were still not isolated or had re-connected. After his two previous ablations, all Martin’s PVs had connected/re-connected. Dr. Cuculich also found many gaps in Martin’s previous roof and mitral isthmus ablation lines.

ECGI Vest Found Hard-To-Map Drivers: The Medtronic ECGI Vest mapping system found Non-PV driver areas in Martin’s heart that easily could have escaped notice with routine mapping systems, areas such as the Coronary Sinus, Left Superior Pulmonary Vein and lateral Right Atrium.

During Dr. Cuculich’s ablation, Martin’s A-Fib/Flutter terminated when his Coronary Sinus was effectively ablated and isolated. This is considered the best outcome of an ablation. Most EPs would have stopped at this point. But because the Medtronic ECGI vest had indicated there were more A-Fib signal sources not yet ablated, Dr. Cuculich ablated those areas as well.

Medtronic ECGI Vest Very Effective! Martin’s A-Fib was a difficult case after two failed ablations. Instead of the usually 2-3-hour ablation, Martin’s took 5 hours, probably because the previous 2 ablation lesions made the third ablation more complicated.

The Medtronic ECGI Vest seems to be a major advance and improvement in the treatment of A-Fib. It certainly worked in Martin’s case. But at this time, few centers in the U.S. are using it and are only beginning to develop significant experience. This is because Medtronic wants the system to work as best as possible before making it more widely available.

What this means to patients: If you have persistent A-Fib or would be considered a potentially difficult case, try to find a center or EP with experience using the Medtronic ECGI Vest (even though you may have to travel.) It seems to be the next major advance and best mapping/ablation system on the market.

References for this Article

Kolata, G. A ‘Game Changer’ for Patients With Irregular Heart Rhythm. The NewYorkTimes.com, Dec. 13, 2017. https://www.nytimes.com/2017/12/13/health/heartbeat-tachycardia-radiation.html

Cuculich, P. S., et al. Noninvasive Cardiac Radiation for Ablation of Ventricular Tachycardia. December 14, 2017. N Engl J Med 2017; 377:2325-2336. DOI: 10.1056/NEJMoa1613773. http://www.nejm.org/doi/full/10.1056/NEJMoa1613773

Ryan, S. The New Era of Catheter Ablation Technology: Force Sensing Catheters. A-Fib.com https://a-fib.com/moussa-mansour-md-force-sensing-catheters-2014-bafs/

Ryan, S. The Role of the Left Atrial Appendage (LAA) & Removal Issues. A-Fib.com https://a-fib.com/left-atrial-appendage-role-and-removal-issues/

Natale, A., et al. Paroxysmal AF Catheter Ablation With a Contact Force Sensing Catheter: Results of the Prospective, Multicenter SMART-AF Trial. Journal of the American College of Cardiology, 2014. ISSN: 1558-3597, Vol: 64, Issue: 7, Page: 647-56. https://doi.org/10.1016/j.jacc.2014.04.072

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