Losing hope and finding alternative.

Since my first onset of afib, I've been trying so hard to sort out the root cause and keep seeking a permanent cure, as well as continuous denial. As I got more episodes, I'm losing hope and feeling desperate. I think maybe I should give up looking for a cure but seeking for good control either by med or procedure to get as less episode as possible. If a procedure or by changing life style or whatever can keep afib away for 10 years, I think it's not too bad to have 4, 5 or 6 more episodes in my life time. In this way I can get my logic out from the dreaded 'incurable' loop and move forward. Maybe this is more realistic.

An ablation by an expert ablationist such as Natale is the only cure currently available. Instead of losing hope and searching for solutions that aren't there, just pick up the phone.

I'd wish there's a 'Like' button in the forum!

I think you are on the right path. You will drive yourself crazy trying to figure out what starts it...what stops it. There is no cure. There is only preventative measures with some lasting longer than others. If there was a cure we wouldn't have this forum, right? A Natale ablation is prob the closest you can get to long term relief. If you are really lucky an ablation may give you relief forever, maybe.Next there are medicines and then diet etc. obviously there are things that aggregate afib, steer clear. Ultimately you have to decide if you are so sick of afib that you want to try an ablation. As difficult as it is you have to be proactive and also realize this is a disease that no one knows the cause and no one knows the cure but symptom relief is the goal we must seek.this forum is a great tool and provides some of that relief.
Tim

Battling AFIB can take time. Be patient and make progress. Managing and minimizing AFIB more realistic than totally conquering it. No need to rush for Ablation, but OK to tentatively plan for it.

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The Anti-Fib
Managing and minimizing AFIB more realistic than totally conquering it.

I disagree. An ablation by a top EP will end your afib with near certainty, and I see no benefit whatsoever to waiting. Six episodes is enough to establish that you do have afib and it's not going away. The drugs used to manage afib are all potentially dangerous, usually come with unpleasant side effects, and usually work less than perfectly.

When I was first diagnosed with arriyhthmia I tried just as you have to find the cause......without success. What was rare occurrences became more frequent. (later learned this is the probable progression for arrhythmia). Eventually was placed on daily anti-arrhythmic medication.....which was expensive and I experienced "most all" the listed side-effects of the medication, and still had episodes of arrhythmia. Throughout this time I was adamantly against "any heart surgery"!!!!!

Fortunately in an effort to learn as much as possible about arrhythmia I found this site. With the assistance of many here I learned more about ablations, but more importantly learned about Natale......gradually changed my opinion about an ablation. After an appointment with him in Austin I decided to get on his schedule. Had an ablation in March 2010 and have been issue free since.

I asked him why I had arrhythmia.....he said I was genetically predisposed for the problem.

Fortunately for me from initial diagnosis to ablation was only about two years (probably had arrhythmia longer however)

Steve
Spring, Tx.

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Carey

Managing and minimizing AFIB more realistic than totally conquering it.

I disagree. An ablation by a top EP will end your afib with near certainty, and I see no benefit whatsoever to waiting. Six episodes is enough to establish that you do have afib and it's not going away. The drugs used to manage afib are all potentially dangerous, usually come with unpleasant side effects, and usually work less than perfectly.

I meant this in the context of Kongs frustration with his current efforts to find a cure without getting an Ablation. But even with Ablation, how many have had a one-only Ablation from a Top-Tier Ablationists including Natale, and then totally conquered AFIB. As far as I can tell, it usually comes back to a degree sooner or later, as many have had to get 2-3 Natale procedures. The closest thing to totally conquering AFIB, would be a full-blown Open-Heart Maze surgery, were they literally completely cut through the Atria, and then sew it back together again.



Edited 3 time(s). Last edit at 04/02/2018 03:38PM by The Anti-Fib.

The Anti-Fib - Your point is well taken. I'm one who has had 3 Natale ablations... The first came after 8 years of slowly increasing events over that time period.... with maybe 3 -4 events in the first year and then more and more. I didn't find the Afibber's forum until year 7 but had been previously searching for contributing causes or what might underlie the onset. My holistic doctor back then thought it was related to my high stress level or perhaps exposure to heavy metals so I embarked on programs to resolve the stress-related adrenal problems and had several detoxing sessions.

Later on, I found the forum and learned more about the importance of electrolytes and rhythm stability and that helped tremendously. What also helped was correcting what was identified as a 'displaced diaphragm'..not a hiatal hernia...but irritated vagus nerve from diaphragm position. Those treatments took me from almost daily AF down to zero in a matter of a week... I stopped the metoprolol and flecainide as a test... and still had no more AF. I also had stopped taking calcium supplements as directed years before by my former gynecologist - as directive to all menopausal women...and that made a huge difference in AF breakthroughs. Then, when my ablation date with Dr. Natale came up about 3 months later, I was tempted to cancel but was worried about a potential problem with insurance so kept the date.

If I hadn't done some of the early sleuthing about underlying causes, perhaps I wouldn't have had such great success afterwards. As it was, I had a glitch at the end of the blanking period and needed ECV... but then in another two months, my heart was calm, and I stayed on my 'new lifestyle regimen' that lasted for 11 blissful years and I observe that to this day, along with adding some new disciplines and nutrients to support mitochondrial function and ATP production plus anti-aging protocols to keep inflammation low and reduce oxidative stress....since the ablation obviously doesn't slow down the aging factor.

The holistic and functional practitioners I was fortunate to consult over the years emphasized that it would be smart to try to determine what systemic "irritants" unique to my biochemistry/physiology that could contribute as heart irritants.
They thought it was important to rule out sleep apnea, heavy metal toxicity, food sensitivities, and such. I did many tests that were 'direct challenge' type tests and then worked on those. I did not have apnea but did have some heavy metal, other chemical markers included in MCS syndrome and also old markers for Lyme disease... Lyme never goes away... just remains dormant - if you're lucky.

Managing the stress factor was probably the most challenging and also important for long-term, though, because that's been my history. I've always said I was born stressed...probably in-utero stress ,,, knowing the family history, etc...so with lots of nutritional supplements to support that, my level of calm is nearly 100% improved compared to where I was at the afib onset. I learned a lot of coping techniques that are extremely useful and I rarely feel anxious or stressed.

The point is, that yes... I'm certainly pleased and grateful that I had access to Dr. Natale when he was here in Cleveland so long ago and then again more recently in Texas. I'm also confident that my status quo now relates to his superb skill and also to the functional assessments and treatments for total body health and well-being. As I've always said, Afib is the canary in the coal mine alerting that something in our body is out of balance. You can quell the canary, but the actual culprit may still cause other health issues so it's wise to rule out all the potential possibilities so you can move on and enjoy life with a harmonious body and peaceful heart. I've just celebrated birthday # 82 and the only med I take is that darn half-dose of Eliquis.

So... to all new afibbers.... it's definitely important to do a life-style risk assessment and manage those, so if you do require an ablation, it has every chance of being successful.... assuming you consult with one of the top, elite EPs such as Dr. Natale and cohorts.

Best wishes to all for a peaceful heart in NSR,
Jackie

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The Anti-Fib
But even with Ablation, how many have had a one-only Ablation from a Top-Tier Ablationists including Natale, and then totally conquered AFIB.

I don't have those numbers but I believe they're quite high, actually.

Thank you everyone for providing very valuable ideas. I agree with Jackie that even finding the root cause may or may not do anything to afib, by correcting any abnormalities in the body will be beneficial for afib and overall health.

Steve, how old were you when you first started afib?

Steve, how old were you when you first started afib?[/quote]

Difficult to answer as I am not sure when I first began to experience arrhythmia. Going to guess late 50's or early 60's.

Initially the first I became aware was on the golf course.....would become light-headed and somewhat dizzy.....and was basically debilitating......the experiences were short and would always go away. Not aware of any other times.....even during my workouts. Still thought I was just dehydrated or over exercised (figured I was low on electrolytes)!! I could most always feel an episode about to occur and would drink Gatorade or PowerAde in an attempt to prevent. Since it happened so infrequently I never considered that I had a physical aliment.

Eventually had an episode in which I blacked out while playing in a tournament and had the privilege of an ambulance ride to the ER. Was then diagnosed with arrhythmia. Two years later had an ablation at 63. During that time went from "pill in the pocket" to part-time medication to daily medication as the arrhythmia became more frequent.

The final determination for me to have an ablation was the quality of life. It was like having a time bomb.....never knowing when an episode would happen. Hated the anti-arrhythmic medications and all the side-affects.....weight gain, nausea, fatigue, and even arrhythmia!! When I met with Natale he told me that my arrhythmia would only get more frequent.

Bottom line....do not view an ablation as a cure. I recently had an appointment with Natale as a follow-up....told him that if I have a recurrence of arrhythmia will be "headed back to Austin".


Steve

I have perfect memory.....just doesn't last very long!!

My ablation was 2011 not 2010.
So I was 64 at the time

s

MAZE isn't a silver bullet either and can cause other problems. I had the MAZE procedure and while it may have "fixed" the A-Fib, it set me up for atypical atrial flutter which, IMO, is much worse and a lot harder (read: impossible, in my case) to treat.

Dont agree. And you do have to realize the more aggressive the EP is with procedures the better chance you have with long term relief ....but the better chance you have with other issues.

Like I said if you are lucky and you are a one and done (and it does happen) FANTASTIC. I remember the days I believed I would be one and done.........didnt happen then hasnt happened now. Luckily I feel (for now) my afib is at bay somewhat but I have a battle with ectopics, LBBB and junctional rythyms. Due to extensive EP work ???? We will never know, but I believe so.

I do believe ablation is the best chance at relief but Im not ever going to say its a cure or that you go in there and come out afib free.

So basically we have no way out but suffer from it for life. That's plain simple and brutal.

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kong2018
So basically we have no way out but suffer from it for life. That's plain simple and brutal.

Well, hello again. I thought it might be you but that nails it. I'd recognize that bleak, fatalistic attitude anywhere. Seriously, are you going to sign up on every afib forum there is, ask all the same questions, and spread the same doom and gloom all over again? Do you ever hear the positive reports or do only the negatives register with you?

You got good advice on stopafib. I don't know why you refuse to heed it.

What other sites are there? StopAFIB.org What else?

It would make sense if you are trying to comprehensively research a Topic, to get varying Opinions from different people.



Edited 1 time(s). Last edit at 04/07/2018 06:19AM by The Anti-Fib.

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kong2018
So basically we have no way out but suffer from it for life. That's plain simple and brutal.

No so. As I have told you before, I have had over 15 years of normal rhythm since ablation. For me AF is a thing of the past, and if it ever returns I shall be back in Bordeaux as fast as they can take me.

Gill

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Gill

So basically we have no way out but suffer from it for life. That's plain simple and brutal.

No so. As I have told you before, I have had over 15 years of normal rhythm since ablation. For me AF is a thing of the past, and if it ever returns I shall be back in Bordeaux as fast as they can take me.

Gill

Thanks for assuring!

Yes but Tsco, you’ve had a near life long battle, starting in your teens If I recall correctly, with a variety of atrial arrhythmias treated by various docs with the first couple of SVT ablations back in the early 2000’s not being successful, until you got to Dr Natale when he still at Cleveland Clinic, after which your SVT was quiet for years until the underlying condition progressed to AFIB, which we now know initial CTI Flutter/SVT (The AVNRT variety in particular) are almost guaranteed to be a canary in the coal mine promising an eventual progression to full blown AFIB.

It’s too bad the SVT was not durably ablated in the first two procedures as they usually are at just over 90% success rates with even relatively average EPs doing these relatively easy and straight forward anatomical-only, cookie-cutter ablations in the right atria only that don’t even require a transeptal puncture.

And Alas, when you got that first Natale SVT ablation in the early to mid 2000’s , the whole field had not yet quite recognized that an initial manifestation of CTI Flutter or SVT as one’s first bout with atrial arrhythmia, is an almost certain guarantee of future AFIB. These days, most advanced EPs seeing a patient like you would start with a prophylactic PVI and then address the currently active CTI -Flutter or right-sided SVT on the way out of the PVI ABL when they withdrew the ablation catheter and lasso mapping catheter back out of the Left Atrium and then they ablate the right atrial CTI Flutter or SVT in the right aria just before pulling all hardware out of the heart to end this dual procedure in hopes of killing two birds with one stone and thus give the patient a great chance at eliminating at least one extra ablation in your arrhythmia ‘career’ long term!

You have done very well over all Tim, especially considering your inherently more challenging scenario than the average paroxysmal AFIB patient presents. It’s too bad too that before Dr Natale took over again your care about 4 yrs ago or so, that you had that first AFIB ablation by a local well thought of EP that included a long FIRM ablation phases added to your PVI and that by your local EPs own admission had some technical glitches that day.

Not to mention the now highly questionable efficacy of the FIRM ablation method from the accumulated peer-reviewed evidence we have amassed to-date including the latest superb Meta-Analysis giving us, by far, the most in-depth and well-vetted insights into the efficacy, or not, of including a FIRM ablation as part of a standard PVI ablation, by comparing the top ten FIRM+PVI ablation studies to-date vs. the most recent highly rigorous top 5 PVI-Only Randomized Control Trials done on PVI-alone ablations over the last 4 years world-wide.

This highly-respected and essentially bullet-proof analysis from this recent FIRM+PVI vs.PVI-Only RCTs Meta-Analysis showed a pooled overall Success rate at >12 months for the average of all 5 top quality Randomized trials of PVI-Only ablations of: 58% freedom from All arrhthymia and off all AAR drugs in ablation virgin hearts!

This compared to the top ten qualifying FIRM+PVI ‘decidedly’ NON-Randomized studies off all AAR drugs, but in which >50% of all patients had had 1.3 prior ablations before the FIRM+PVI procedure! The pooled success rate for this FIRM+PVI average of 10 studies was just: 50% well under (but statistically still barely similar) than the far more rigorously designed pool of 5 PVI-Only RCTs!

The conclusion of this ground breaking Meta-Analysis is that adding a FIRM mapping and ablation phase to a standard PVI ablation buys you nothing at all! Not one iota of improved efficacy ... in fact a bit less though just barely still within statistical equivalence. The kicker is that adding the FIRM module to a PVI-only ABL increases average procedure time (and cost!) by just over two full Hours!! All the while not granting one iota of added benefit above and beyond a well done PVI-Only procedure as confirmed by these pooled results for the 5 most recent Randomized Control Trials on PVI ablation!

The point being here Tim, is that you’ve had a bigger burden to endure from a much earlier age than all but a handful of patients I’ve followed, and starting at a much earlier time when ablations were far more in their infancy during your first group of SVT based procedures. And by the time your condition morphed, inevitably to AFIB, your first AFIB ablation was by a very well meaning and super nice EP who, alas, was experimenting with FIRM which likely added more delay at least to the whole larger process.

The Good news is your AFIB seems about over even though there may be some Sinus node issues that a pacer ‘may’ be needed to address going forward. You are still doing very well for a guy with so many cardiac hurdles since your early years to the present day! However, your case is far from representative of what the vast majority of paroxysmal Afibbers here looking to assess their likelihood of being truly free of all Arrhythmia from an ablation should assume is in store for them. Especially those starting in recent years with the far more effective procedures and experienced EPs that are available now. Not to mention, resources like this forum to help this new generation of patients achieve real long-term freedom from a one to two procedure process and more rarely a very small third touch up being needed far less often to achieve real and lasting success as long as each afibber is highly-discriminating in their choice of who will guide their entire expert ablation process.

As far as you’ve come now Tim, thanks to your admirable patience and determination, were you to only now be starting on your arrhythmia journey, no doubt it would all have been a much simpler and shorter process than you’ve had to deal with.

Cheers!
Shannon



Edited 1 time(s). Last edit at 04/07/2018 03:59PM by Shannon.

Totally agree Shannon! And if it weren't for Natale I'm not sure where I would be! My point is ablation is a symptom curative and it basically cages the beast. If a person is lucky and they get it the first time it is grand!! We all need to remember not everyone is fortunate enough to go to Natale direct. I was ! Locally I have 4 acquaintances who started like me with very similar svt etc, went one time and haven't had a problem since. It happens!