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Now A-Fib Free: A 23-Year Atrial Fibrillation Ordeal, Trial, Tribulations and Recovery

By Charn Deol, Richmond, British Columbia, Canada, May 2017
Personal A-Fib story by Charn Deol, BC, Canada at A-Fib.com

Charn Deol, B.C., Canada

My medical issues with atrial fibrillation started when I was 43 in August of 1993 when I was aware of having a few skipped heartbeats. I had just returned to Canada having been working extensively for the last few years in Southeast Asia. About a week later, the irregular heart beating got worse in duration.

At the same time, a dull aching pain started in the left chest region the size of a 50-cent piece.

A-Fib Drugs Don’t Work, Chest Pain Condition Worse

Upon being sent to a heart specialist in September 1993, numerous drugs were prescribed to keep my heart in rhythm (digoxin, flecainide, sotalol). They did not work, some had serious side effects, and every few days I would go into atrial fibrillation.

The atrial fibrillation happened once or twice per week and lasted from a few hours to 24 hours. Then it would stop on its own, and the heart would go into normal sinus rhythm.

Second medical condition: At the same time, the very centered pain in the upper left chest area kept getting worse and added to the debilitation of daily life. These medical conditions started my long journey to find relief (cure) from two medical conditions that were not being controlled or cured by conventional medical treatments.

Alternative Healthcare Practitioners―India & China, Too

In my search for a cure(s), I met a family practitioner and other medical and alternative specialists who used treatment protocols that could be labeled ‘experimental’ or ‘out of the box’, as they say.

I was all mixed up as to what was going on in my body. This can be psychologically very distressing if you do not have a strong family/friend support network.

While discovering alternative medical treatments in 1994, I also went to India for Ayurvedic treatment [one of the world’s oldest holistic healing systems] and even to China for treatment. Most alternative (non-allopathic) medical practitioners look at the body as an interconnected processing unit and believed in my case that the pain in the left chest and the atrial fibrillation were connected. This was not the thinking of the allopathic doctors, so I was all mixed up as to what was going on in my body. This can be psychologically very distressing if you do not have a strong family/friend support network.

Having been to a multitude of healthcare practitioners, numerous chiropractors, massage therapists and other more esoteric healthcare practitioners (100s over the 23 years), there was no resolution to my medical condition.

Encainide Drug Therapy: Up and Out

The heart specialist that gave me sotalol [an antiarrhythmic drug] in 1995 gave me a dose that dropped the heartbeat to 30 beats per minute putting me into the emergency room, but the drug had no effect on my atrial fibrillation.

In 1996 seeing my third cardiologist, I was put on a drug called encainide [also an antiarrhythmic drug], to be used on an as needed basis [pill-in-the-pocket].  It worked and would stop my atrial fibrillation in approximately 20 minutes.

But it had no effect on the chest pain which was getting worse now with a pain spot in the left shoulder blade area also the size of a 50-cent piece having started out of nowhere.

Encainide is a class Ic antiarrhythmic agent. It is no longer used because of its frequent proarrhythmic side effects.

About 6 months after starting on the encainide, one of my friend’s son with a heart condition since childhood passed away. And I was told he had just been started on a new drug for him called “encainide” along with “sotalol”. The same cardiologist had been providing this drug free of charge to me, so I was pleased that it worked for me and cost me nothing.

The problem I found out was that it was illegal for the cardiologist to prescribe this drug because it had killed too many people. When he got caught, then encainide was no longer available. (Encainide is a class 1C antiarrhythmic drug no longer used because of its frequent proarrhythmic effects.)

Chelation for Very High Levels of Mercury

I had the highest level of mercury ever seen by the lab in any of their patients.

While all the above was going on, I was tested for heavy metals through urine analysis. It was discovered that I had the highest level of mercury ever seen by the lab in any of their patients (7400 nmol/dl). So I started protocols to take the mercury out of my body using chelation treatments with EDTA and then DMPS and DMSA (metal chelators).

At the same time, my other medical practitioners had me on oral and IV multivitamins and mineral protocols.

Mercury Cleared, Atrial Fibrillation Stops!

By 2000, the mercury was finally out of my system and my atrial fibrillation stopped! It is known mercury can concentrate in nerve tissue. While only a correlative relationship―mercury out of system―my atrial fibrillation did stop.

Chest Pain Condition Worse than Ever

From 2000 to 2010 I had NO atrial fibrillation. But the chest pain condition did not stop, and it got worse.

From 2000 to 2010 I had no atrial fibrillation. But the chest pain condition did not stop, and it got worse extending into my gut region. All medical protocols tried could not alleviate this pain, nor was any etiology discovered as to what was the underlying cause of the pain condition.

Thanks to my resiliency, I was still able to go hiking, skiing, travel and work part-time on my own schedule. But it took great perseverance.

After 10 Years A-Fib Returns―and Heavy Levels of Lead (This Time)!

In 2010, while starting a hike, the atrial fibrillation began again. The A-Fib would last 6-8 hours and occur an average of 2 times per week.

I was immediately tested for heavy metals again, and this time I had high levels of lead, not mercury. Even with thorough investigations of potential sources for this lead contamination in my body, no source was discovered. We worked (and continue to work) on getting these lead levels down (I had no high lead levels back in the 1990’s when tested―only mercury).

Amiodarone Bad Side Effects

I again began doing alternative treatments to deal with the atrial fibrillation and the pain condition, nothing worked. I went to China again for treatments, IV EDTA infusions again, etc., but the pain persisted at high levels and the atrial fibrillation kept getting worse.

A new cardiologist put me on a new drug called amiodarone. This drug lead to paranoia. This is another cardiologist I dropped.

In 2012, I saw a new cardiologist who put me on flecainide again. And when it did not work, he provided me with a new drug called amiodarone. This drug lead to paranoia and left me with an epididymitis in my right testicle which I suffer from to this day. (Epididymitis is inflammation of the tube at the back of the testicle that stores and carries sperm.) He had no compassion for my dilemma. This is another cardiologist I dropped.

Ablation in Vancouver, B.C. Fails―A-Fib Worse and More Chest Pain

By late 2014, the atrial fibrillation was occurring on average every second day and lasting 24-38 hours.  My next cardiologist sent me to the Atrial Fibrillation clinic in Vancouver where I was evaluated by an electrophysiologist. The A-Fib was very debilitating, so I was ready for surgery.

VIDEO: Catheter Ablation For A-Fib: What it is, How it’s Done and What Results Can Be Expected

WATCH A VIDEO: Catheter Ablation For A-Fib: What it is, How it’s Done and What Results Can Be Expected (4:15)

I asked for the most experienced electrophysiologist at the clinic to do the surgery. I waited an extra 3 months for the surgery because this highly qualified electrophysiologist was in so much demand.

Finally, in November 2015 I had the ablation therapy (it took approximately 2.5 hours). I came out of the surgery worse than ever. The atrial fibrillation did not stop, and the pain was worse than ever in my left chest, left shoulder-blade and gut regions.

AV Node Ablation & Pacemaker?―No! No! No!

The electrophysiologist wanted to wait for the 6 month recuperation period after the ablation therapy to see if I would go into regular sinus rhythm. By September 2016 (9 months later), I was worse than ever. In November, I saw my electrophysiologist under the impression that he would do another ablation treatment, since I was told and with my own research had confirmed that ablation treatments may be required for up to four times for the treatment to work.

This “top” electrophysiologist recommended I have a pacemaker put in and the AV node be ablated instead, so that the pacemaker could take over the regular beating of the heart. I asked the electrophysiologist why not do further ablation treatments as per the standard practice. He said if that is what I wanted, he would do another ablation. This was quite disconcerting―I am relying on his extensive knowledge to help me in a field where I am no expert. We agreed to set up a surgical date for a second ablation on December 12, 2016.

My gut said to ‘no longer trust’ this supposed best electrophysiologist at the hospital.

Upon leaving the office and arriving home, I informed my wife of the unpleasant appointment I had with the electrophysiologist, especially his lackadaisical attitude towards my serious heart condition. As a patient, the relationship is somewhat like that of a child with a parent. The patient is naïve, scared, distraught and looking for a path of reassurance from the medical profession. This was not the case in this situation.

This is when “gut instincts” come into play. My gut said to ‘no longer trust’ this supposed best electrophysiologist at the hospital and search for an alternative path. (And I canceled my December 12, 2016 scheduled ablation.)

Counseling with Steve Ryan

Having been a reader of Steve Ryan’s website, I reached out to him and agreed for him to become my advocate and provide me with advice on how to deal with my current concerns over either going along with having a pacemaker placed in my chest along with ablation of the AV node OR to try a second ablation. Steve recommended a second ablation and the Bordeaux Clinic―it was too early to place a pacemaker/ablate the AV node at this stage.

Following this detailed discussion with Steve, I spoke with my wife and got a hold of the Bordeaux Clinic in France on December 2, 2016. With some back and forth email communication, ablation therapy was arranged for December 12, 2016. Somehow with luck and quick action, my wife and I were on an airplane to France and arrived in Bordeaux on December 10.

Second Ablation in Bordeaux and Use of CardioInsight Vest

The surgery on December 12 was done by Prof. Mélèze Hocini. Instead of taking the standard time of 2.5 to 3 hours for the surgery, it took well over 6 hours until approximately 4 pm. Dr Hocini was on her feet and exhausted.

My surgery was much more complicated than envisioned, and there were many areas that had to be ablated not only for the atrial fibrillation but also for atrial flutter.

I was informed the next day that my surgery was much more complicated than envisioned, and there were many areas that had to be ablated not only for the atrial fibrillation but also for atrial flutter. It appeared the “top” specialist I had used in Vancouver had not done his job properly. (Remember that I had been worse for the year after my first ablation).

Dr. Hocini was able to see the numerous sites leading to the atrial fibrillation/flutter in my heart due to an advanced computer assisted mapping vest (CardioInsight) which helps the electrophysiologist see in more detail cells in the heart that are acting erratically.  This system is just starting to be used in the U.S. by a few doctors. (See Bordeaux ECGI CardioInsight)

Successful Ablation—No A-Fib, But Chest Pain Condition Continues

I felt great the day after the surgery, no atrial fibrillation or flutter. Pain syndrome still there. I remained in the hospital for 4 more days and all went well, and then stayed in France for 7 more days sightseeing. No problems. I was to continue on Xarelto to keep the blood thin [for risk of stroke].

At Home A-Fib Returns with Persistent A-Flutter

Upon arriving back in Canada, the atrial fibrillation and flutter returned. Dr Hocini recommended cardioversion which I did twice but I still ended up in persistent atrial flutter with a heartbeat in the 130 range but no longer irregular.

Another cardioversion with sotalol converted my heart beat to sinus rhythm. I have now remained in rhythm since February 17, 2017.

Beta Blockers were tried to lower the heartbeat for a few weeks which did not work. Dr. Hocini recommended another cardioversion with sotalol prescribed for after the cardioversion. This was done on February 17, 2017. The heartbeat converted to sinus rhythm (65 heartbeat and was regular).

Normal Sinus Rhythm―4+ Months So Far

I have now remained in rhythm since February 17, 2017 with a quick flutter occurring once in a while. Since I am sensitive to prescription medications, I was placed on a low dose of 40 mg sotalol 2 times per day.

Minerals, Vitamin IVs for Inflammation of the Heart

With my other medical practitioners, I also had mineral and vitamin IVs during this time to help alleviate the inflammation in my heart from the surgery. I also took (and continue to take) vitamins and supplements as recommended by the other medical professionals treating me to keep the inflammation in the heart down.

Dr. Hocini had stated that since my ablation surgery was so complicated, I might have to go back to Bordeaux for another ablation. I have to get through the recommended 6 month recuperation time frame to see if the surgery has been successful. The last 3 months have me heading in the right direction of recovery.

Lessons Learned: After 23 Years with A-Fib

From this experience I’ve learned to obtain as much knowledge as possible of your condition. Trust your gut feelings if you feel uncomfortable with your surgeon. Increase your intake of nutritious foods and supplements prior to and after the surgery. Steve Ryan’s website provided me with the knowledge to make educated decisions.

If you have the funds and/or a complicated atrial fibrillation situation, please find the best surgeon you can and then still question him/her. Get a second [or third] opinion if your gut tells you to.

Doctors are just human beings with positive and negative traits like the rest of us. My first surgeon did not do his job properly in my first ablation and was flippant in his attitude in recommending a second surgical treatment.

With luck, trusting my gut instinct, educating myself, and a great family support system, I was able to find the best clinic in the world to treat me for this very debilitating medical condition.

I welcome your email if I can be of help to you.

Charn Deol, May 2017
charnee@gmail.com

P.S. FYI: My chest pain problem persists and goes undiagnosed, but that’s a story for another website!

Editor’s Comments:
Three month ‘blanking’ period: Charn’s A-Fib returned after his successful second ablation. This is quite common in more difficult cases. Your heart is ‘learning’ to beat normally again. That’s why doctors wait for at least three months before declaring your ablation a success. In Charn’s case, during the first two months, a couple rounds of cardioversions were followed by a third with sotalol prescribed after the cardioversion. This worked to get his heart back into and stay in normal sinus rhythm (NSR).
Be a proactive patient: Charn’s story is truly inspiring and an example of being proactive and not giving up. Do research yourself, get advice, and check out alternatives! We’ve been conditioned to trust doctors. Sometimes we just have to say “NO! That doesn’t make sense to me”. It’s okay to fire your doctor!
I told Charn an AV Node ablation is a treatment of last resort; it destroys the AV Node, the heart’s natural pacemaker. There’s no going back and you are forever pacemaker dependent.
Instead, I advised Charn to seek a second ablation and supplied him a list of Master EPs who routinely treat difficult, complex cases. Kudos to him for deciding to go to the Bordeaux group, considered the best in the world. [For more about Bordeaux, see my article, ‘2016 Cost of Ablation by Bordeaux Group (It’s Less Than You Might Think)’].
Chelation therapy: Chelation is FDA approved for lead removal and is the preferred medical treatment for metal poisoning. But few doctors perform chelation therapy or provide heavy metal testing. To find a doctor for these therapies, go to: http://www.acam.org. (They also do IV therapy for vitamin C and other vitamins and minerals which seems to have helped Charn.)
Amiodarone drug therapy: Amiodarone is considered the most effective of the antiarrhythmic drugs, but it’s also the most toxic and is notorious for bad side effects, including death. It’s generally prescribed only for short periods of time such as for a few months after a catheter ablation and under very close supervision. (For more about Amiodarone, see my article, ‘Amiodarone: Most Effective and Most Toxic‘.

Read our 12-page free report.

Charn’s second ablation Operating Report: Charn’s ablation was more difficult than most. He had been in A-Fib off and on for 23 years. In addition to having to work around a previous failed ablation, Dr. Hocini had to track down and ablate many non-PV triggers. Using the CardioInsight system, Dr. Hocini found A-Fib sources in the septum and in the anterior Left Atrium (LA) region, and his left and right inferior PVs had to be re-isolated.
But Dr. Hocini didn’t stop there. Using pacing again, Dr. Hocini found peri-mitral flutter in Charn’s left atrium which terminated by completing an anterior mitral line and required high energy because of the thickness of his heart tissue. Dr. Hocini had to work on Charn for six hours to the point of exhaustion.
Charn’s chest pain continues: Charn’s debilitating chest pain seemed to start when he first developed A-Fib. I’m disappointed that being A-Fib-free didn’t get rid of the pain he still experiences. I’ve never heard of pain like this coming from A-Fib. Charn has seen many doctors and tried alternative strategies to no avail.
If anyone has any ideas, strategies, or insights to help Charn’s pain, please email me.

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If you find any errors on this page, email us. Y Last updated: Sunday, June 4, 2017

 

 

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