Shannon Responds to Dr Mandrola's opinion!

Shannon rebuts Dr Mandrola's opinion featured in his Trials and Fribrillations column in this powerfully written article.
Now the readers of Medscape know what we have known for years that Shannon is committed patient advocate and valuable resource.for AF patients!
Dennis

[www.medscape.com]



Edited 2 time(s). Last edit at 11/14/2015 03:27AM by DennisC.

Thanks Dennis!

Shannon, you did an excellent job!!

George

Thanks for posting!

To Shannon----As always, AWESOME response! Thanks for being our advocate.

Sincerely,
Ken

Well done Shannon!

Thanks Folks for the kind words,

This was a difficult article for me to write and I certainly never anticipated, nor ever wanted, to have to rebut someone else's writing on a mutual topic of interest. I want to underscore, too, that I respect Dr Mandrola's efforts to inform his readers in his regular blog space, and I do agree with quite a few of his ideas and viewpoints and realize that he is well-intentioned in his endeavor to share those viewpoints in his blog. As noted in my rebuttal too, he is a very good communicator as well and I do enjoy quite a number of his articles. All of which, did not make it any easier when I read, what was a very surprising, and in my view, poorly supported dismissal of the powerful and important randomized controlled BELIEF trial on the same kind of advanced ablation protocols so many of us have benefited from on our forum and newsletter over the years.

As the owner and editor now of our special AFIB resource online it felt particularly important for me to say something here to reflect our long years of real world outcomes, and considering the fact that our collective experience over the last 16 years uniquely represents the most concentrated collective anecdotal experience with life-style risk factor modification and management (RFM) on the web, as well as having such a large number of our readers who have also benefited from the combination of dedicated RFM and the very same type of advanced extended ablation protocol, with or without LAA isolation, and both of which have so much relevance to many of our forum and newsletter readers.

Collectively it was this reality that inspired me to finally say something about our own long experiences over the last 16 years on both key topics that Dr Mandrola based many of his comments on in his BELIEF trial missive.

Seeing how much of what I felt were simply wrong or misleading (though well meaning) conclusions about both issues offered by Dr. John in these two articles or blog posts two months ago, I would have been derelict not to speak up in response.

Especially considering that the two main themes Dr Mandrola brought up in his critique of the BELIEF trial protocol ... adopting lifestyle risk factor management ... and his far too negative assessment of extended ablations ... including those more advanced procedures that include LAA isolation when needed, are both focal points of our own experience here with each issue.

If we, as a group, who have collected and shared so much about the big value of taking better care of ourselves proactively, and acknowledging too that for many of us the best outcome still required combining such self-healthcare methods with an expert ablation process, when needed, in the majority of cases on our forum, and I then stood by and didnt even raise a hand to counter what largely flew in the face of that long experience, then I would have felt complicit in the further confusion and possible disillusionment of many afibbers who might take his comments in his two articles in question at face value.

Finally, I shuddered to think what my life and that of so many other friends here on our forum and elsewhere would be like now had Dr. Mandrola's again well-intentioned, though too reticent and conflicted a stance regarding ablation methodology had won the day and there were no brave pioneers actually expanding the edge of the envelope to find new effective ways of treating us really difficult cases of AFIB beyond parking us all on rate control and OAC drugs and pushing us out now the ice flow with the elderly Eskimos...

Dr Mandrola's 'Doubting the BELIEF trial' article just so happened to come out while I was in Kansas City the second weekend in September for the Global Alliance for AF's annual World AFIB Day awareness celebration.

Since a number of the BELIEF trial investigators and authors were also there, it's little surprise that the stunning disconnect displayed about this trial and its implication by Dr. John in his initial response article, was a hot topic of discussion there. Indeed, after rereading his article a second and third time that first day, I mentioned to a group of top EPs there that in light of our website and forums long experience with the two key topics of contention in Dr. John's article. I felt compelled to write a response to hopefully give some real world balance to the debate and with the hope that, somehow, Medscape might publish such a rebuttal from a non-physician. (fat chance!)

This is where the offer arose that if I wrote such a piece documenting even just some of the key points that we all collectively felt strongly that Dr Mandrola missed the boat on in his article, the BELIEF trial investigators would first review my rebuttal, and if it was accurate, they would co-sponsor and endorse the rebuttal as well.

As such, a response that would likely have taken me only two or three days to write, had it been solely on my behalf, now wound up going through 9 versions and over a month and too many hours to count for me to pen, in an effort to not only represent my views, but also trying to represent those views and concerns of the large 20+ group of BELIEF trial investigators as well who would act as co-signers to help encourage the rebuttal's publication in Medscape.

And whose long multi-year work on this important trial had been summarily dismissed in such a cavalier and poorly supported fashion in Dr. Johns two postings discussing this first randomized trial on this advanced ablation protocol for the most difficult to treat long standing persistent afibbers.

No doubt too, getting the full support of the BELIEF trial investigators after reviewing my draft, gave me the confidence to submit it for publication and their endorsement certainly resulted in it getting published.

Nevertheless, while I'm grateful that Medscape did publish our response verbatim, I also want to reach out to Dr Mandrola and try to meet up with him at one of the upcoming next year AFIB conferences ... if he is at all open to doing so. Hopefully, I can share not only the many areas of common ground we share, but also discuss with him more of the background and nuances of our long and rich experiences in both supporting and promoting life-style risk factor management as well as the real world more typical outcomes from similar advanced extended ablation protocols he has long had a rather too negative impression of in my view and when looking at our collective overall experience over the years.

Perhaps Dr. John has not had the chance to review the outcomes close up of such advanced extended procedures with large numbers of real afibbers when done by top tier highly experienced persistent ablationist? In any event, I feel sure there is far more common ground we both share, and will fully agree on than there are these few issues where we differ in opinion and experience. And I truly hope he will take my comments in the constructive and friendly light in which they are meant, as I noted at the end of my letter to the editor, as I do appreciate that he and I both have only the best interest of afibbers everywhere at heart.

Shannon



Edited 5 time(s). Last edit at 11/19/2015 06:59PM by Shannon.

Well said Shannon, Thanks for taking the time to explain things.

Dee

You are welcome Dee,

And sorry it took me two days after my Medscape letter to the editor came out to share some of this background. It was Magdalena's birthday yesterday and I have been more than swamped with the AFIB Report, and these back to back articles both coming out this same week of all things, in any event. Needed a good day off yesterday :-)

Hopefully, some of those who have glanced at the article and this thread already here will check in again and see my reply. I would have liked to be able to offer more of such context and background in the published rebuttal. But space just did not allow any more than I was able to squeeze in. It was long enough as is and I could only address a few of the original points by Dr John that properly needed addressing and rebuttal as it was.

Take care,
Shannon



Edited 1 time(s). Last edit at 11/15/2015 01:32PM by Shannon.

What a Gem you are!

Bravo!

McHale

Thank You Shannon.

I believe you did a wonderful job of explaining your, (our) position on this important topic.

Here's to a happy Thanksgiving to you and your loved ones.

John

Excellent, Shannon! Bravo! I am delighted and gratified that you responded. Dr John's position has been aggravating me for awhile, and I've been hoping you would respond. Thank you!

Louise

Wow Shannon - that was a great article and strong response! Excellent job. I will join the many who thank you from the bottom of our hearts - (all the way to the LAA, wherever that is..haha)..but truly...THANK YOU for all that you do for all of us here.

And a belated happy birthday to Magdelena! ~ Barb