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PVI for paroxysmal afib, or wait a bit?

Posted by SteveW 
PVI for paroxysmal afib, or wait a bit?
March 14, 2017 02:40PM
Hello,
I apologize in advance for a lengthy first post. I recently found this Forum and have been lurking and reading as much as possible. I’m looking for opinions on the big question in my mind which is: Is paroxysmal Afib something you should “nip in the bud” by getting ablated as soon as possible, or is it more reasonable to wait and hope for better techniques and solutions as time passes while simultaneously trying to make lifestyle modifications.
Here is my story: I started having rare occurrences of scary heart rhythms four years ago. The first time I was riding bike wearing a polar chest strap and suddenly I was at 224 beats per minute. This went on for about three minutes and as soon as I sat down, went away (though it left me feeling shot). Over the next couple years I had a few similar occurrences, but could never get a diagnosis, even after wearing a Ziopatch for two weeks, though it did show a brief episode of ventricular tachycardia which the EP said was not a big deal as it was so very brief. A little over a year ago, all this started ramping up after my fall physical and flu shot. In December of 2016 I would have shortness of breath while sitting watching TV, and many odd little episodes of heart rhythm problems. I did a workup, with a nuclear stress test and all looked ok. In February of 2017 I fell asleep on a plane and woke up with the dreaded fish flopping feeling in my heart. I was nauseated and freaked out so I got up to “walk it off” thinking at least I’d make it to the bathroom in the plane if I threw up. Next thing I knew, people were yelling for help and I was coming to on the floor of the plane. The stewardess made me get up and I passed out again. I was given an ECG in the airport when we landed and it was normal so I went on the next flight without incident. All these episodes were being blamed on things like dehydration, not enough breakfast, too much wine the night before etc. by my Internal Medicine Doctor.
Finally, exactly a year ago my heart went to 225 at work, would not go down and I took and ambulance to the hospital where it took twenty hours to convert to sinus. The diagnosis was finally easy, I was in Afib with rapid ventricular response. They did an angiogram and that was perfect, no issues at all. Sent me home three days later on Metoprolol, which I could not imaging living on, it affected me terribly, living as a tired zombi. I also take aspirin as I have a very low chad score and am told that I don’t need more for a blood thinner.
So I went to Mayo in Rochester, MN (I live in Fargo). The EP at Mayo was eager to go ahead with the PVI, promising a better than 85% chance of cure due to my good health and age (I’m 57, 185 pounds, 5 ft. 11 in. tall, don’t smoke and regularly ride twenty to thirty miles on my bike in the summer). BUT, the surgery terrifies me and it seems to have a limited success over the long term. Also, I was concerned about doing it in a teaching hospital. My EP in Fargo has a go slow attitude toward the surgery also. As well, my Internal Medicine Doctor, who is a good friend thinks I should wait on it based on conversations he had with a regular Cardiologist in Fargo, who thought there was no rush and maybe there will be a better option later (this Cardiologist also recommended I switch to Diltiazem, which I tolerate WAY better). I’ve been reading much of Dr. John Mandrola’s blog which has some skepticism toward this surgery and suggests lifestyle is a big deal. I use an Apple watch with an app “Heartwatch” which tracks my heart rate all day every day. With the Diltiazem I don’t seem to get the rapid ventricular response, but I do assume that I’m in afib any time my heart rate suddenly shoots up for no good reason. I also can feel it, but nothing like the RVR.
This app showed me a correlation with alcohol and caffeine so I haven’t had either since June of this year. I also wonder if there is sugar connection. I’m exercising regularly and trying to limit stress. I know lack of sleep can also be a trigger. I’m also wondering about a connection to GERD, which is an issue for me. Several of my events with RVR started with bending over (like tying shoes).
But lately it seems like I’m having more episodes for no good reason, still livable, but worried all the time if I’m doing more harm than good by trying to mitigate with lifestyle and not surgery. I’m also feeling slightly limited as I would not want to sign up for a big bike tour and have it impacted by afib. I also don’t really like to fly anymore as that episode where I passed out in the plane was terrifying. I should mention that when I’ve had afib with rvr, it feels terrifying, like I’m going to die.
Again, just to be clear, my big question here is surgery, do it now, or wait? If I do it now at 57 and need it again at 67, what happens in my mid seventies when I need it again?
Thank you so much for reading this, and thank you for this forum.
Re: PVI for paroxysmal afib, or wait a bit?
March 14, 2017 05:15PM
Dr. John does a great job at confusing people! I thought about backing out of my scheduled ablation two years ago partly because of his obfuscations.

The decision is yours in cooperation with your EP/Cardio team. If you seek out the best possible practitioner at the best possible facility that you can find and afford for yourself, you'll find that there is almost always a very good chance for success. Don't let the broad-based statistics that include "part-time" left-atrial ablationist EPs taint your thinking on the subject.

And, if a good, durable index ablation is indeed achieved there may be no need for follow-up procedures later in life. If there is, then rest assured the technology will have advanced in the years you will have been enjoying NSR.
Re: PVI for paroxysmal afib, or wait a bit?
March 14, 2017 07:10PM
You are correct to be concerned about teaching hospitals. Do you want to be the first person
an EP fellow does his burns on? I realize they have to start somewhere. When I specified that
I wanted the attending to do my ablation, the procedure was mysteriously cancelled. Regarding
mid seventies, needing a repeat ablation, you are on point again. The data I saw showed that
the median time to afib recurrance after ablation is 5 years.

BD
Re: PVI for paroxysmal afib, or wait a bit?
March 14, 2017 10:02PM
Quote
SteveW
I’m exercising regularly and trying to limit stress. I know lack of sleep can also be a trigger. I’m also wondering about a connection to GERD, which is an issue for me.

Excessive endurance exercise can cause issues. It was my ticket to afib. As part of my afib remission strategy, I detrained. Though very still active I do not train or compete with endurance activities. If a participate, I try not to push it. This does not mean I'm not active, I'm probably on the edge of too much. GERD can be a huge trigger which would indicate an adrenergic rather than a vagal trigger, as do the episodes during exercise. As Dr. John notes, exercise can be beneficial for the couch potato, but for those are chronically fit, exercise (especially endurance) can be unhelpful.

Electrolytes can help, they certainly have helped me keep afib in remission for 12 1/2 years. Primarily magnesium to bowel tolerance and limiting excess calcium intake. I also use an on-demand med (Flecainide) to convert to NSR when my remission efforts fail. This is infrequent - 3 times in nearly 4 years for a total of about 2 1/2 hours of afib (after starting my afib "career" with a 2 1/2 month episode).

If you see an increase in episode frequency and duration that you are unable to turn around with a concerted effort, I would get an ablation. Our advice here is to go to the best operator that you can. I've referred my friends and family to Andrea Natale at St. David's in Austin. He is arguably the best in the world. If that doesn't work for you, our moderator Shannon may have other suggestions. Whoever you use, make sure the person you choose has their hands on the controls. I'd get it in writing! Let the fellows learn on somebody else.

George
Re: PVI for paroxysmal afib, or wait a bit?
March 14, 2017 10:14PM
The equation has a lot of variables, and each one of us is different. I'm 58 and active, so have a lot of the same questions you do regarding whether to do it now or wait. I was diagnosed in 2013 and am still paroxysmal but have gotten tired of being tired on meds (rythmol and metoprolol) and random trips to the ER (for flutter or cardioversions) so am having an ablation next week. There are things that I'm still concerned about, and part of me is concerned that I'm going to start a bunch of dominoes that I may regret starting, but I've just gotten to the point where I want to try to get it fixed, and realized that my best shot is now rather than later. It took me a while to get here: about 4 years, lots of Rythmol and one flutter ablation, and I did a lot of lifestyle stuff and research during that time. The diet, supplements and acupuncture had a positive effect, but did not stop my episodes. However, it gave me the time to do the research necessary for me to get a better understanding of what was going on, what my options are and where the best probabilities lie. The generally quoted ablation statistics are not that encouraging, but when you dig a little deeper you find that 81% of afib ablations in the US are done by EPs who do fewer than 25 a year in centers doing fewer than 50 a year - and from that perspective its kind of amazing that they can even quote a 60% success rate! So if you get yourself into the remaining 19% who do more than 25 a year your odds will increase; get further up the food chain and it the odds get even better; with a top-line EP you can get the odds from 60% to high 80%'s, low 90%'s for PAF. At that point I'm ready to take the risk. You'll know if and when it feels like the right thing to do.
Re: PVI for paroxysmal afib, or wait a bit?
March 15, 2017 02:25PM
SteveW - Thanks for your detailed report... My heart goes out to you for your horrific flying experience and arrhythmia. I can't begin to imagine.

As others note, the heavy or intense exercise is well known to cause arrhythmia problems in certain individuals. Much of that can be the result of low electrolytes aka minerals that help regulate electrical conductivity and stimulate heart beats. Many afibbers have found that by making dietary changes, staying away from foods and substances that interfere with or deplete the electrolytes, can make a difference is reversing the Afib trend.... as well as reducing exercise intensity.

It's thought that there is a genetic reason why some of us become afibbers and others skate by unscathed... regardless of diet, lifestyle, etc. One of the genetic factors is the inability of some to absorb the crucial mineral, magnesium; and that's why it's one of the core nutrients recommended for a nutrient repletion protocol for afibbers. It's not the only mineral but the one that absolutely and totally must be in abundance -inside heart cells where it functions. Depleters of magnesium include stress, alcohol, drugs and chemicals... and calcium interference. A diet high in calcium and low in magnesium is likely to help set the stage for Afib in susceptible individuals. There are more example.... I'm just listing this as an example.

Also, you mention GERD and tying your shoes... that indicates an irritated vagus nerve.... the master nerve that innervates the heart and diaphragm...and many other tissues. If the vagus is already irritated from GERD then bending over and scrunching the abs... can set off the Afib. Remedy is to work on digestive health by making sure there is adequate nutrition to support natural production of stomach acid and other essential digestive enzymes.

As for going sooner rather than later for the ablation procedure, it makes sense to try the dietary and lifestyle changes along with targeted nutritional supplements for at least six months to see if there are improvements. If not, then you can consider making contact with one of the top EPs who is well-known to do safe and effective ablations. Shannon can help with that. My history is that over 20 years ago, I had my first event at age 59 and because I never, ever wanted to consider another surgical procedure... (I had had several previous horrific experiences)...so I tried everything I could to reverse the process for 8 years and then since it was becoming worse, was given an ablation date for 6 months later with Dr. Natale when he was here in Cleveland, Ohio. Then, I found this forum and learned about the importance of much higher dosing than I had been using and avoiding calcium and many other tips that worked so well, I went from almost constant AF to zero and nearly cancelled the ablation. However, at the time my current insurance was in jeopardy and I didn't want to take the chance of not being covered, so I kept the date... November 2003. That lasted for 11 blissful years and then even with all my continued mindfulness and heroics, AF returned and I had 2 more ablations about a year apart and all is calm since April 2015. Most likely, because of my age, the remodeling and tissue changes that occur with aging strongly influenced the recurrence.

So, my advice is: in order to achieve the best possible outcome... and a lasting one, having an ablation sooner, rather than later is probably to your advantage... BUT only if you make permanent changes in diet and lifestyle because most likely, that genetic vulnerability is going to continue to be an influence. In a way, as much as we think of Afib as a curse or scourge upon humanity, I have always said it's a blessing in disguise... or the 'canary in the coal mine'... alerting us to a more profound aberration in our makeup and in the long run, because of Afib and the healthy changes we make to help eliminate it will work in our favor for continued health and longevity.

There are basic tips for self-help offered in the report "The Strategy" which is being updated to include the several other factors that are influential but were not in that initial report. Go here: [www.afibbers.org]

You've received excellent and helpful responses thus far and if I can can help guide you through the process of systematically focusing on the core electrolytes and other critical nutrients, I'll be most happy to help.
Just send me a PM.

Kind regards,
Jackie


PS - Are the heart meds the only meds you take?
Re: PVI for paroxysmal afib, or wait a bit?
March 15, 2017 09:00PM
Thank you all for taking the time to read my post and for all these great responses giving me much to think about and digest. Jackie, thank you for the link to "the strategy", I plan on reading it thoroughly on Friday as I will be traveling. In response to the question about other meds, I had been taking protonix for the gerd and more recently omeprazole, 40mg in both cases (insurance changes drive what I take there).Otherwise a multivitamin, B12, baby aspirin and that Magnesium oxide 750/day. Sounds like I can improve on how I try to get magnesium.
It's interesting that the EP I see in Fargo sort of turned his nose up at magnesium supplements, he claimed that magnesium in bloodstream does not equal magnesium in heart muscle cells. There seems to be enough anectodal evidence on this forum to suggest that it does actually do some good.
Much to learn. Thanks again.
Steve
Re: PVI for paroxysmal afib, or wait a bit?
March 15, 2017 09:59PM
Magnesium in blood equals magnesium in blood and nothing else.

It's 2% of what's actually in your body. So for it (serum, or blood, levels) to be "normal" really doesn't give any indication whatsoever about the intracellular magnesium levels in your heart, liver, or any other organ in your body. The best supplement in my experience is the chelated magnesium glycinate. As with all supplements, give them ample time to take effect. They are not prescription medications. So, not hours, not even days, but rather weeks and months.
Re: PVI for paroxysmal afib, or wait a bit?
March 15, 2017 10:42PM
In one sense the EP is correct. The body works very hard to maintain the serum magnesium level. Low serum is low, but OK serum may still mean low cellular levels. Jackie will suggest an Exatest for intra cellular levels (which have been correlated with intracellular levels in the heart). It is likely the best test, however magnesium guru Carolyn Dean MD says an acceptable test is RBC magnesium aiming for levels in the 6-6.5 range. I dump large quantities of mag (2.5 g) in my system and my last RBC was like 7.1. Before that I dumped 5 g/day and my RBC was about 7.9. If you can't get a doc to order it, you can order it yourself with a LabCorp requisition here for $49 <[requestatest.com]

Unlike Wolf, I've found my system responds pretty quickly to mag. Early on I thought I was "cured" after 2 years no afib and quit it. I had afib within 24 to 48 hours. I've also found that taking it if I have to take my on-demand med flecainide will significantly shorten conversion times. When I first started using it, it worked pretty quickly.

George
Re: PVI for paroxysmal afib, or wait a bit?
March 16, 2017 12:46PM
George:

My holistic doctor runs the RBC test for magnesium, he said he tried the exatest and found it unreliable, so who do you believe. I would say if your RBC test is good you should be ok and if it runs low than no doubt you are.

Liz
Re: PVI for paroxysmal afib, or wait a bit?
March 16, 2017 01:45PM
Liz,

I ran an Exatest 12 1/2 years ago. It showed may mag at the very bottom of normal. Taking mag has allowed me to stay in afib remission for over 12 years, so I assume this would show better if I resampled. However, for me, the Exatest was hard to come by. Had to go to a cash only integrative doc which pretty expensive and the test was expensive for me. So I've never repeated. I can't speak to how accurate it is.

I agree, the RBC seems to be a reasonable choice.

George
Re: PVI for paroxysmal afib, or wait a bit?
March 18, 2017 02:37PM
Steve.... As George mentions, I do recommend having the ExaTest as it is the only test that measures by direct tissue analysis what levels of minerals or electrolytes are actually inside the cells where it functions. It is "high science"... in that it was developed for use with astronauts so they could easily and accurately measure critically important stats in space travel.

While the RBC magnesium test may be an improvement over serum magnesium test levels, the fact remains that 99% of the body’s magnesium is intra-cellular. If the magnesium ion is unable to access inside the cell’s wall (if the magnesium receptor is damaged or the cell’s outer envelope or layer is damaged so the receptor sites are also damaged), then measuring a RBC for magnesium levels is meaningless.

The outer layer cell damage is important overall because it means other nutrients are also denied access and the patient is at risk for more than just arrhythmia. Various chemicals and environmental toxins contribute to outer wall damage but dietary intake of bad fats – ie, damaging trans fats damages the cell’s receptor sites.

I recommend the ExaTest for that reason (magnesium) but also because ExaTest provides intracellular levels of sodium, potassium, calcium, chloride (and phosphorous). This information is especially important as well since magnesium, calcium, sodium and potassium all must function in proper levels to avoid the development of arrhythmia.

Also, biophysicist Burton Silver PhD who heads up Intracellular Diagnostics has written: "Measurement of intracellular levels with the EXA test is vital to maintain and treat many medical syndromes. Serum levels, RBCs and lymphocytes do not adequately reflect cell or tissue levels of magnesium."

You can read more at Intracellular Diagnostics website:
[www.exatest.com]

Jackie
Re: PVI for paroxysmal afib, or wait a bit?
April 03, 2017 09:36PM
If your budget allows and you can find a doctor to administer it, I'd recommend the EXA test at least once just to get a more indepth look at all the electrolytes as Jackie has mentioned. I'd do a RBC test at the same time to see if there is any correlation. Then moving forward I would stick to the RBC as your guide.

I have had a RBC and a EXA test done every year for the past couple years and will be having them both done this summer again. I'm doing this simply out of curiosity. I want to see if both tests track the same...which I have found they don'tsad smiley

If you're curious, I wrote about my RBC and EXA tests from last year. You can see the actual test results as well. Here is the link:

[www.livingwithatrialfibrillation.com]

Travis
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