Definition of success?

Hi, having read that outcomes are defined by nsr for a year after the ablation, what is the typical experience for those of you who have had the proceedure? Is it nsr for evermore, drug free? It seems difficult to get actual statistics for that online, as opposed to commentary.

[www.medscape.com]
[m.jaha.ahajournals.org]
[content.onlinejacc.org]

John - My post-ablation history is

I was 67 at the time of my Natale ablation in 2003.

At 103 days following ablation, I had breakthrough AF and was cardioverted at hour 39.
All was quiet until year 4. Then I had a breakthrough which I managed with the PIP protocol.
Same in years 4, 5 and 6...one event every 6 or 9 months. So I decided I needed to emphasize the core nutrients involved in stabilizing the heart energy required for NSR and experimented with support nutrients in supplemental form. And I wrote The Strategy report based on my successes of reversing that trend. The Strategy is currently under revision to include several key points that I did not emphasize initially but were part of my original protocols.

In 2012 or year 9, a test indicated I had markers for Lyme infection. I began treatment which upset something and most likely caused an inflammatory response because I had a session of several months of horrendous AF that changed to A flutter and had to be cardioverted several times.

In 2013, all was basically quiet, but then, suddenly the bouts of flutter returned and I had several more cardioversions. The last was October 2013 and I decided to go back on antiarrhythmics (this time I chose Rythmol) to allow the heart to calm down. I stopped or cut back on most of the Lyme treatment.

I'll see the local EP in June and will wean off the antiarrhythmic very slowly. If the irritation to my heart and immune system has settled down, I fully expect that I'll be able to sustain NSR once again as long as I am faithful to the core Strategy supplements.

The Exatest last year showed that while I was 'within range'... I was on the low side of all the values and ratios for magnesium and potassium...so the message to me is that I need to be constantly vigilant with dietary intake of magnesium and potassium-containing foods and supplement as well because I have no margin for error.

Jackie

Jackie - somehow I missed knowing that you had flutter and got back on an antiarrythmics..sorry to hear that. Hopefully you will be much better by the time you have your check up and be able to wean back off of the Rythmol.

I have a couple of questions for you.

One..why Rythmol this time instead of back on Flecainide?

Was your ablation a basic PVI isolation or did you have more done? I'm sure you've discussed this earlier, but the details are fuzzy on that. Was ther any indication of Flutter before you had your ablation?

I would think with all of the emphasis you've given for magnesium, that there'd be no chance that you would be low in that area...how is that even possible for you? That's a bit unsettling to hear, as you are so good about reminding all of us to be mindful of our electrolytes.

John - I had my ablation last September, and so far, so good. It was a LAA isolation, so I had quite a bit of work done. I do still get PAC's and blips here and there, but no Afib was detected on any of my recordings since then, including the 7 day monitor, so I'm hoping that it truly is over and done. Given what Jackie just wrote, I guess we can never know for certain if Afib will return in the future, but I'm hoping that as time goes on, doctors have gotten better and better at keeping this beast quiet for good. Having Dr. Natale makes me feel a little more confident that this is indeed possible.

Barb

Success is taking that big first step to have an ablation done before you end up with a stroke and more diseased atrial substrate. To finally put a lid on on the beast is a great feeling, after 4 years and a stroke I'm approaching a year in NSR after an ablation Dr Natale. Today makes 11 months since The Maestro ablated me.

McHale



Edited 2 time(s). Last edit at 04/28/2014 07:37AM by McHale.

Thanks for your responses.
I must admit that the more i read the more confused i am getting:
"Arrhythmia-free survival rates after a single catheter ablation procedure were 40%, 37%, and 29% at 1, 2, and 5 years, respectively"
Does that mean that more than half of ablations were unsuccessful?
By this flowchart, a number of folks were getting 3 ablations:
[content.onlinejacc.org]
At $40,000 a pop thats got to hurt!
Is there a larger database of outcomes available?
Regards
John

Hi John BM,

You have to be very careful when reviewing past stats to see the big picture clearly of the AFIB ablation scene and history. Each of the stats from
the very encouraging to the rather dismal have been, and are, true within the context of the various groups of EPs and centers involved as well as patient population selections and the look back periods in time that a given study reflects.

Modern AFIB ablation history as we know it started from late 1998 so basically around 15 years. This too is one if the most challenging and complex invasive procedures in all of medicine to master. Keep in mind too there have been huge advances in both understanding if AFIB as well as ablation technology such as big jumps in catheter design from non-irrigated to irrigated catheters and from using only Fluoroscopy to now integrating CT scans into 3D Electroanatomical mapping and imaging systems as well as a ICE imaging and now phase mapping systems coming online along with new contact force catheters and big improvements in understanding how, when and where to ablate inside the left and right atriums over the last 6 years or so compared to prior history.

Some of these studies are based on a mix of mostly average EPs looking back to earlier years and no outdated equipment and knowledge.

Recently some interesting studies including a large 10 year view of the whole history of ablations across the US from 2000 to 2010 looking at complication rates and a very solid new study from Dr Natale's groups giving the longest history yet by following a group of over 500 patients initially ablated at Cleveland Clinic during the 13 month period from end of 2000 to Jan of 2002 and then follow prospectively for 10 full years to 2012. Both if these large long time frame studies totally underscore and reaffirm one of the central messages of our website to be very discriminating in where you go and who you choose to handle the catheters in one's ablation process for best possible results with the least amount of complications.

In the 10 year overall US complication study of 93,000 ablations done from 2000 to 2010 the overall complication rate was around 6..2% to 6.4%. But the stunning fact found was that >81% of all of those US ablations were done in rural to medium sized centers doing less than 50 procedures per year and by EPs doing <25 ablations PER YEAR!!! Not surprisingly, this large majority of all US ablations through 2010 having been done by basically greenhorn EPs at very low volume centers were responsible for a large lions share of the total complication rate number. On the other hand, the remaining 19% rare progressively safer the farther up that number toward elite status they are, compared to the barebones amount of procedures done by EPs who collectively are responsible for >81% of all US ablations in that 10 year time frame, and who also are largely responsible for the very mixed bag of results numbers you are understandably finding confusing, JohnBM.

With the recent 10 year prospective Natale group study which closely followed for ten full years every paroxysmal patient ablated at Cleveland Clinic ( a big majority ablated by Dr Natale himself) during the year of 2001 which was still in the early stone age in ablation history, we find the best yet performance record anywhere reported and especially for the later years of this study which leveled off and where required touch up ablations were relatively uncommon and very respectable in number compared to other long term studies which tended to get worse with time. This is very encouraging and shows the big difference in outcome and complications when choosing an elite level EP at a high volume center and not just settling for a less experienced EP at a local hospital doing low volume ablation work.

You really have to learn to look passed the face value of the numbers to just what the context of those numbers is and what it implies due to this big split still between the relatively smaller group of top tier centers and EPs versus the run of the mill EPs trying to build up their experience resume and hang more skins on the wall, and yet the majority of whom are not even doing enough ablations a year to maintain functional proficiency in performing an ablation!

This split is why we so strongly point new people here toward the top level centers and EPs and at least then, if for some reason they can't or choose not to make the safest choice for one of the worlds best ablationists, then at least they have a good template of what real excellence in this field looks like in making the best possible choice from whatever pool of EPs they determine they will have to choose from and thus hope they can find one good enough for them.

We try to make your job easy up front, but if a given person's circumstances don't allow traveling for five or so days and they simply can't wait for two to four months to get in with a top EP ... all nearly all the best EPs will have a roughly similar waiting list give or take a month or so ... then at least they will know more of less what to look for and hopefully have a good list of 'deal-breaker' questions ready to ask to help make the next best choice available to them more clear.

Best wishes on your search, just keep this fact in mind that not all of these numbers are comparing apples to apples at all.

Shannon



Edited 1 time(s). Last edit at 04/28/2014 03:37PM by Shannon.

I will say I was about to be ablated by a EP who I just happened to go to by recommendation from my local small city Doctors. I was scheduled for Jan. 14 2014. Also, I had persistent AFIB; not good....

I found this website and with the knowledge base of these good men and women, I cancelled that Jan. 14,2014 Ablation and made a appointment with Dr. Natale in Austin Texas. I was Ablated in Austin, Texas on Feb. 27,2014.

It has been only 2 months but overall I am doing good. I just went off my Arrhythmia Drug Multag 4 days ago.

I am so glad I found this site. I am currently on Chelated Magnesium because of tis website and the information provided and I will be on this website for years to come.

Am I "out of the woods" I hope so but I know it is possible I might need a "touch up" from The Maestro Dr. Natale but maybe not.

I know my odds are greater for success because I was lead to Dr. Natale in Austin Texas by this forum of experience.

Just my 2 cents.

JohnBM Wrote:
-------------------------------------------------------
> Thanks for your responses.
> I must admit that the more i read the more
> confused i am getting:
> "Arrhythmia-free survival rates after a single
> catheter ablation procedure were 40%, 37%, and 29%
> at 1, 2, and 5 years, respectively"
> Does that mean that more than half of ablations
> were unsuccessful?
> By this flowchart, a number of folks were getting
> 3 ablations:
> [content.onlinejacc.org]
> 247/m_05061_gr1.jpeg
> At $40,000 a pop thats got to hurt!
> Is there a larger database of outcomes available?
> Regards
> John

PS to my first reply to your post above;

The flow chart you showed is more or less similar to what you would find at more typical centers and perhaps from a broader number of EPs during the early years.

For comparison, with the Natale 10 year prospective study the over 500 people ablated during the year 2001 at CC at full 59% were completely freed of AFIB and off all AAR drugs at TEN YEARS from the date of their index ablation and reguired no touch up ablation at all .. truly one and done!

Impressively, 87% of the total number were AFIB free at the 2012 ten year mark after having one touch up procedure in most cases with a much smaller number needing a second touch up, for three procedures in total, to seal the deal.

Off the top of my head I think of those 41% who had at least one additional AFIB or Flutter breakthrough during the full ten year period after their index ablation in 2001 using non-irrignated catheters and very old and now outdated mapping and imaging gear and still rudimentary overall knowledge about what to do back then, it was only 4 % who need a touch up during the three years from Jan 2003 to Jan 2006 and 5% over the last four full years from Jan 2006 though Jan 2010 reguired a touch up to finish up the process during this 10 year period.

I dont have the figures handy for the first year and the 2nd year after the index ablation but it was something like 13% of so that had at least one breakthrough over the full 10 year period but did not feel it was significant enough to warrant a follow up ablation. Leaving then around 27% that eventually had one, or more rarely two, touch ups to finish off their ablation process over ten full years.

That is very impressive indeed considering the early time frame and very basic state of the ablation art then when each of these people had their index procedure. In any event, this study from JACC that was presented last December in abstract form and is soon to be published in full in JACC is a hallmark pointing to what is possible in the right hands.

And surely it points to a significant improvement still when taking only people ablated in say the last several years and then looking forward 10 years down the road, with all the new tools uses over the last 5 to 6 years and the great improvement is skills and knowledge all around. The comparable results will look far better now than in 2001 from elite level ablationist like Dr Natale and others he has trained and/or who are in the general elite range ball park now.

Interestingly the complication rates actually went up a bit when looking at all the EPs doing ablations since so manny new ones jumped in over the last 8 to 10 years there was that many more who were very green and thus take more time to get up to speed leading to a greater number of complications overall that when most to the ablationist early on, were likely EPs with greater stature in thioer respective groups and were more at the cutting edge then of the state of the art, even though with not so much experience yet in doing AFIB ablations.

Alas, there are no doubt quite a few EPs doing ablations now who really should not be at all and would be much better off doing their EP work in managing AFIB patients and doing pacemaker installs and referring other patients to the more experienced EPs who are more dedicated to staying at the from of the line in term of skill level.

Shannon

Thanks Shannon,
It seems best then to try to avoid ablations except those performed by the elite group.
I came across the Bordeau team a few years ago when i started looking for options. Are there other high volume centres in Europe that you know of?
In the UK, data are collected by NICOR, but it's difficult to find much except commentary. Here is a pdf produced by the NHS, but interestingly has the French team's names on it!
www.wales.nhs.uk/sitesplus/986/opendoc/203171
This report has more meat to it:
[m.eurheartj.oxfordjournals.org]
This extract jumped out at me. An anomoly?
"The likelihood of success was not influenced by the number of annual AFib ablation procedures per centre(P.0.999.). In contrast, bodymass index, type of AFib, absence of underlying disorder (i.e. loneAF), and atrial diameter were significantly associated with the success"



Edited 2 time(s). Last edit at 04/28/2014 07:00PM by JohnBM.

I had progressively worse afib (and some aflutter) for 10 months, then had PVI ablation.

Post-ablation I have had no afib now for 18 months and counting. Had two short episodes of flutter (1 for half hr and another for 2 hrs) in the first 3 months post-ablation.

I have a few seconds of flutter now and then but it resolves quickly.

Regards,
Gary

Hi JohnBM

The report you quote about the number of ablations being done not having a bearing on success is wrong. A number of other reports have confirmed a strong connection between operator and center experience and both increased success rates and significantly decreased complication rates. The model used for screening in this report no doubt put the spot like on these other contributors which certainly do factor in as well into the equation.

However, what you will find too is that the more advanced and high volume centers almost invariable do a much larger percentage of those more difficult cases including people with all of those issues that would tend to predispose toward lower success rates and yet the clear connection between high volume EPs and greater success is clear in spite of this.

This is especially true of Natale and Bordeaux, both of which tend to see a very large percentage of difficult persistent and long standing persistent cases in their respect continents, making both of those centers stellar world leading track records all the more impressive, indeed.

My preference is certainly to be very discrimination in ones's choice for ablationist as it sets all the odds strongly in your favor from the get go. But its really a big priority when you have either longer term paroxysmal AFIB with some long duration episodes in the 24 hour Plus range, or for persistent AFIB. Then my feeling is its too risky to chance it with anyone who doesn't do mostly those kind of challenging procedures and I would personally rule out anyone who avoids addressing the LAA and CS areas with isolation when needed for those with these more challenging cases. About 50% of these tougher choices are tying one hand behind their back from the outset going to an EP who has yet to discover the key importance of those structures in advanced atrial disease.

The demand for an elite level EP, while always preferable, is less urgent for more simple earlier paroxysmal AFIB, though still you should always shoot for the most experienced and solid EP you can arrange for yourself regardless. You just never know for sure what the EP will find when in there and you want someone who is fully prepared to address what ever the situation might be.

There are some good EPs in Europe outside of Bordeaux, including some of Natale's Italian group like Claudio Tondo in Milan. Also, Sabine Ernest may well be a rising young star on the scene in the UK, though I just don't know enough details about her procedure yet to know for sure. She is certainly very knowledgeable as noted in her excellent book on 'Anatomy for Cardiac Electrophysiologist' which I'm about 3/4 of the way through at the moment and is really interesting to learn all the ins and outs of the heart from an EP and ablation perspective. However, keep in mind too that having vast knowledge about this field does not at all necessarily imply great skill with a catheter.

There are some leading lights in the AFIB pantheon who are very well respected physicians, and rightly so, who I wouldn't want to come within a country mile of my heart with a catheter. A number of these docs make a very valuable contribution to our knowledge base and are key leaders in the field, but when it comes to being true maestros in the EP lab, more than a few who are doing ablations just don't quite have it.

Which underscores the reality that not everyone who aspires to be a great AFIB ablationist either can become one nor should be one. This is a field that demands real talent, both innate that cannot be taught, and acquired talent as well.

One issue that I think has held back many EU ablationist somewhat, and is why some of the most recent performance reports out of Europe tend to not show as good results, overall as some more recent ones in the US, especially the latest and most telling report so far from Natale's groups over a 10 year prospective study period as noted above, as well as a couple of others, is their still sparse use of Isoproterenol drug challenge during ablations, as noted in the latest April/May The AFIB Report.

It's becoming increasingly clear with each new study that has come out on this topic of drug challenge during ablations in the last couple years now, and particularly, the most recent reports showing an unmistakable overall advantage in using Isoproterenol/ Adenosine drugs challenge immediately after doing an ablation to search for both any early reconnections say around the PVs or elsewhere, and to ferret out any significant latent triggers that were not discovered in the initial EP study portion of the ablation and that may well have been still too suppressed by anesthesia to show up on the first go around, but which very well can and almost certainly will raise their heads again any where from a few minutes post ablation to a a year or two later, and still not be considered true new sources that only manifested some time after the last ablation.

The figures seem to support a net benefit or around 10% to 13% improvement in long term ablation results when using drug challenge than when not. That is a significant difference and a large part of those numbers tend to track the differences in more recent reports, more or less, between some of the higher volume US and EU centers.

Bordeaux is starting to use more Isoproterenol in select situations I understand, but there has generally been a 'not invented here' syndrome in the EU overall with regard to its use. While in North and South American and all of Asia Isoproterenol/ Adenosine has been widely adopted with very good effect.

The EU folks claim it makes it too easy to ablate false or mechanical triggers that may not really become a trigger or can sustain AFIB or flutter 'in the wild' post ablation, but that concern has largely been answered successfully by groups in both Asia and the US including a recent impressive study by Natale's group, showing it just takes some added learning and skill to be able to reliably recognize which triggers under drug challenge are very likely to become a problem if they remain unaddressed and will almost certainly lead to follow up ablations being needed. Once an EP learns how to use drug challenge and recognize which are good trigger targets and which (the ones that cannot be reproduced reliably during the drug challenge within an ablation) are likely safe to avoid ablating, then both their reconnection rates will go down some and their overall success rates will tend to increase is the take home message from these various recent studies.

So while its not universally true in Europe, I do think on the whole the EU EPs are a bit behind the curve on this issue and hopefully these most recent studies will start to rapidly increase the numbers who jump on the drug challenge bandwagon, even if its awhile after that train has left the station.

If you can make it to Bordeaux, please do so for your best bet overall. You may well do fine with a hand flu of others, I know Dr Boersma in Holland is a highly skilled ablationist as well and there are a handful in Germany including Dr Lewalter in Munich has a good reputation as well, though I am a bit less knowledgable about some of the EU EPs than in the US so there are bound to be others. Nevertheless, your best bet for the most experience is still in Bordeaux.

Cheers,
Shannon

John,


Wanted to share my ablation experience as I benefited greatly from the guidance and experience from others on this site.

Here is a summary of my situation and thought process that led me to a catheter ablation with Natale.

I was diagnosed with atrial fibrillation about six years ago......not sure how long I actually had a problem prior to diagnosis but definitely had arrhythmia for some period of time. My atrial fibrillation initially almost always occurred on the golf course (or soon after)….in fact I had a problem during a tournament which resulted in an expensive ride to the hospital!! That was when I was officially diagnosed with atrial fibrillation.

As a result of the diagnosis I was given Rythmol as a “pill in the pocket”…..told to keep it in my briefcase, my desk, my car, golf bag, house, etc. This was fine for a while as my events were infrequent and never lasted more than a few hours. For me arrhythmia was a nuance rather than a major health issue. Over time the events seemed to occur somewhat more frequently…. now usually occurred on a weekend. As the frequency increased I became more concerned. At the recommendation of my internist I switched from my cardiologist to an EP cardiologist……both told me that I had paroxysmal arrhythmia and that it would not go away and would most likely get worse over time. Both explained that there was a procedure....catheter ablation….that was a potential cure.

There was no way in “hell” I was ready for heart surgery!!

They were correct…..my frequency of problems increased…but not the duration. Interestingly, a high percentage of events still were related to golf but now started to occur at other times including during my exercise workouts as well. I could not establish a clear relationship to activity or food and arrhythmia. In the prior year I had worn a Holter monitor on two separate occasions with no sign of arrhythmia. Finally, I had an event and went directly to the EP cardiologist and he was able to document via an EKG.

Now with this information my doctor initiated daily medication with Rythmol (twice per day)…..started in January 2010. However, I experienced just about every side-effect listed for the medication……including arrhythmia. Even though the frequency of events was reduced I almost would rather have arrhythmia than endure the side-effects of the medication. However, it was still like “Russian Roulette” in terms of when an event would occur……it greatly impacted my life. At this point I began to learn as much as possible about arrhythmia and in the process discovered the LAF website.

Bottom line….. from what I read on this site started the recommended potassium and magnesium supplements in May but also switched medications to Multaq. While the new medication was not as debilitating as Rhythmol I still had occasional events of arrhythmia (not sure of the impact of the supplements versus the Multaq as I started almost simultaneously). I had spent several months in an attempt to identify potential “triggers” without very much success……per my EP cardiologist it is very difficult to isolate the specific cause(s).

As I researched atrial fibrillation and the anti-arrhythmic medications I learned that the drugs used were toxic long-term and were not a very acceptable option. I definitely did not want to continue with the medication forever, and became more receptive to an ablation. Again, through this site I learned a great deal in reference to a cardiac catheter ablation…..procedure, expectations, potential problems, etc. It was very apparent that the procedure was very expertise/experience related and that Andrea Natale was, if not the best, one of the best in the world. While I was still very much opposed to the procedure I wanted to explore my options. As part of my due diligence on an ablation had an appointment with Natale in Austin (live in Houston).

Had a meeting with Natale in November 2010, and here is a summary of what he told me:

My atrial fibrillation will not go away….may not get worse but most likely will. Also, he expects the medication to eventually be less effective (on a side note he told me that I am one of the very few he has seen that had success with Multaq). He told me that basically only two options available.....medication or ablation. We discussed the ablation in detail and based on my specific diagnosis he felt that I had a high probability of success with an ablation….probably one surgery. He was very straight-forward on the potential risks and benefit from the surgery. At the end of the appointment he concluded that I was a good candidate for the procedure. Decided to get on his schedule and could cancel if I opted to not have the surgery.

This was a very difficult decision. Ultimately, I decided that I did not want to continue to take medication that was toxic (if the Multaq became less effective the next mediation that I would be required to take was even more toxic), and while my arrhythmia was not long lasting I never knew when it would occur. Even though I did not want to have an ablation I was not willing to accept this situation.

So, in March of 2011 I had a catheter ablation with Natale in Austin and have been problem free since. Additionally I stopped the anti-arrhythmic medication the week prior to the procedure and have not taken since…..usually required to take for some period of time post-procedure. I did have to take warfarin for 90 days.

I know this is not necessarily a cure but more probably a prevention…..for that reason continue to take potassium and magnesium. When I asked Natale his opinion on the supplements…..he said it doesn’t hurt!

I recently sent an email to Natale with a question in reference to what I thought could be a potential cause of my arrhythmia (low testosterone due to an orchiectomy for testicular cancer)……his answer was that I am genetically predisposed for arrhythmia.

So, I continue with my normal daily activities….including my exercise program. Should my arrhythmia recur I would not hesitate to have a second ablation with Natale.


Steve
Spring, Tx.

Thanks Steve for your reply.
I am happy to know that it is going well for you, excellent.

Knowing that i could never afford a private ablation, i am ploughing through the data from as many follow-up and meta studies that i can find. I shall post again when i have read them all, to maybe give a poor-man's view on the options.
Here in Europe, particularly Ireland/Uk, we have a public health system paid for out of our taxes (and our ancestors sacrifices) that is presently being sold off and turned into a "for profit" system. Resources are and have been ruthlessly stripped out of the existing infrastructure to pay for the ruinous financial speculation of the major banks. 60 new children's hospitals (at 600 million a pop) could have been built for the bailout amount given to just one bank. The idea of a profit driven healthcare system to care for the lives of the citizens of the richest countries in the world seems to me to be totally reprehensible, especially when it is to be provided by many of these same groupings that caused the meltdown to begin with.
Anyway, it means that there are fewer options for the majority of people, mainly working class, who have worked as hard as anyone else in society, but got no extra healthcare package along with their wages, or even enough wages to afford one.
Best Wishes,
John