Welcome to the Afibber’s Forum
Serving Afibbers worldwide since 1999
Moderated by Shannon and Carey
 |
 |
 |
 |
 |
 |
Home
>
AFIBBERS FORUM
>
Topic
Back from Austin
Posted by rob50
|
Back from Austin July 15, 2015 03:47PM |
Registered: 10 years ago Posts: 73 |
Dear All,
I had my second ablation with Dr. Natale on July 9th in Austin, and, as so many have reported, my experience there was excellent. The staff at Texas Cardiac Arrhythmia Institute (TCAI) and at St. David’s were both wonderful. For those of you who are newer to this Forum, I had my first ablation at St. Luke’s in New York City with Dr. Natale in August of 2013 after 19 years of paroxysmal AF that had progressed to persistent (24/7) in the five months prior to that ablation. You can read read more about my experience here: www.afibbers.net.
Since my first ablation in August of 2013, I’ve had a number of breakthrough episodes of AF/flutter as well as some periods of ectopy, which most of the time did not progress to AF. My experience of these episodes was that the ablation was definitely limiting the duration and frequency of the episodes, most of which were, for me, relatively short (2-4 hours). From the beginning (1994), most of my AF episodes have been of several hours duration and leading up to the 2013 ablation, I had episodes that would last three weeks and then resolve for a day or two before going through this cycle again. [Note: if this is you now, please don’t wait as long as I did].
As I’ve written recently here, my experience since the first ablation has been that my quality of life was 90-95% better, and the total time that I was in AF was 5-10%. But I was having some kind of arrhythmia every second or third day, and even if resolved in an hour or two, I knew that it was unlikely to completely resolve (no episodes or greatly reduced number) at this point with the diet and lifestyle efforts I have been employing for 20 years, despite my best efforts. In May and June, I would say that I was actually much better than some of the times around the six-month mark after my first ablation, when I was very anxious about whether the ablation had been a success or not, knowing that I had had a number of breakthrough episodes. With the exception of the persistent AF I was in prior to my first ablation, I have always converted to NSR on my own, and except for a period of about six months when I was on Multaq (after the six-month mark past my first ablation), I’ve not taken AAR drugs or any other kind of drug for AF (I began Warfarin after I became persistent in 2013 and in preparation for the first ablation. I am CHADS = 0, but have been on anti-coagulation since March 2013). Multaq was definitely a mixed experience for me, and I finally elected to stop taking it in late February of this year right before I went to Austin to consult with Dr. Natale there and establish my patient records with TCAI. Dr. Natale approved of my decision to stop Multaq and my second ablation was scheduled for early July (last week).
I expected that with my long history of AF that the second procedure would likely involve isolating the LAA, since this is a frequent source of automaticity. Dr. Natale did not isolate my LAA in the first ablation, but he did create some delay around the LAA, which is more or less “standard” for his PVAI in someone who was moving toward longstanding persistent AF. He noted at the time of the first procedure that anesthesia can sometimes mask areas that otherwise might be ablated. While my experience immediately after the first procedure suggested that “one and done” was a possibility, it became clear after the blanking period that this was not likely.
For the second procedure, the electrical activity is again mapped and all previous lesions from the PVAI are thoroughly checked. In my case, Dr. Natale found one small area around one of the pulmonary veins that had reconnected, and one other new source that was a trigger for the recurrent AF (I don’t have a copy of my ablation report yet, so I don’t have all the technical details). Unusual in my case, I believe, was the fact that he found no source of the arrhythmia coming from the LAA, and therefore in this second procedure chose not to isolate that area. Obviously, this is very good news for me, given the life-long consequences of LAA isolation related to anti-coagulation. Like most here, if not all, I would like to be off all drugs. I was fully prepared to accept that I would wake up to the news that my LAA was isolated, and was more than willing to accept this possibility as a necessary step to eliminating AF.
Dr. Natale said that the involvement of the LAA is more often found among women, but he also cautioned that women often develop AF at a later age than men, so going forward it could be that 10 years down the road it might be necessary to return to the LAA if there was a recurrence of AF. He said that the data for men at my age (64) and history are not yet available, so it’s an open question about the probability of future LAA involvement.
I’ve been feeling quite well, if appropriately tired since returning home on Sunday, and I’ve taken the entire week off from work, as I did after the first procedure. I have a Linq heart monitor implanted subcutaneously as this is the preferred device for Dr. Natale’s office for people with a longer history of AF. The second procedure has been a shorter recovery for me (still in progress) because the duration was shorter and extent of the ablation was less than the index procedure. I was delighted that Dr. Natale did not require a Foley catheter this time around, and this certainly made the recovery easier. I gained four pounds from the water used to cool the catheter during the procedure, but quickly got rid of this after one day of Lasix. Heart rate is around 80, which is not as elevated as the first ablation, and I expected this.
With the hope that they may be helpful and the caution that these opinions and observations are personal and at times subjective, here are some thoughts from my experience of living with AF for over 20 years:
1. AF is complex and multifactorial. The etiology is unknown at present, and the fact that it can occur in otherwise healthy men and women and that it also occurs as a result of other illnesses/diseases has resulted in these two very different groups being conflated in some (most?) studies, since both are presenting with AF. In addition to this distinction, there are many others that make individual responses to suggestions/recommendations about supplements, diet, exercise, etc. highly variable. This has been one of the biggest frustrations for me personally over the years. Reading that a particular nutrient such as magnesium, for instance, is critical in addressing AF, I found that taking the recommended dose in some cases (or simply hoping that more was better) actually triggers AF. It has taken me quite a while to learn to trust my body’s reactions to food and supplements. I am reminded of the wonderful British physician Iona Heath’s cogent comment in answer to the following interview question:
Interviewer: What single unheralded change has made the most difference in your field in your lifetime?
Heath: The creation of an epidemic of symptomless disease based only on deviant biometrics. It is time medicine got back to its core task of attempting to relieve suffering.
Yes. And those of us with AF are suffering. My only point is that ignoring what you actually feel and observe in lieu of any particular set of numbers can create a disconnect, and it may be a distraction from more substantive information that might emerge from considering the appropriate numbers and also how your body reacts to the recommendation. As an article in the most recent AFIB Report suggests, 500 mg. of magnesium may lead to a magnesium deficiency (and other nutrient deficiencies) if your reaction to this dosage is “intestinal hurry.” To ignore this possibility and continue to take the recommended number will ultimately be counterproductive.
2. Most of the medical treatment options for AF reduce or eliminate the condition by addressing the symptoms of the condition, but not the causes of the condition, which remain mostly elusive. I wanted to find something that addresses the cause, because this was the only approach that I could consider a “cure.” There is nothing controversial in my position, and I would assume that it’s what any AF sufferer would want. Time devoted to continued learning about AF and suffering with the condition have led me to what I feel is a more realistic conclusion: while the treatments for AF are imperfect, there are some that are effective, and the increasing evidence is that the condition is not benign, as it was viewed when I was first diagnosed. If anything, the evidence continues to mount that, for most people, AF is progressive and the best chance of eliminating it is to address it early. Of course, I am on the outside of this curve, but I want to believe that the years I spent pursuing the best diet, exercise and stress management plans to create as much of a healing milieu as I could are one of the reasons that I’ve done as well as I’ve done.
If it seems that the emphasis on this site has been more favorable to ablation as a front-line approach to eliminating AF, it is, in my opinion, because ablation technology and experience, especially at the highest level, has improved exponentially in the past decade, and the results now have the greatest promise for long-term elimination of AF. Many of those here who support this position are among the most dedicated and disciplined in pursuing “holistic” approaches to AF, and I would count myself among those who have taken a very disciplined approach to nutrition, exercise, sleep and lifestyle. The issues for anyone for whom this approach does not provide compelling long-term relief (and there are several members of this list who have fortunately found relief from this approach) are: what is the measure by which I determine success, when increasingly the evidence is mounting for early intervention, and how long do I work with this approach alone if it is not providing substantial relief from AF? These are critical questions and the decision is ultimately an individual one in each case. You can live with the condition, or you can seek to eliminate it. If you choose to eliminate it, the medical option that has the most hope for the long term at this point is ablation and the sooner you seek this intervention with an EP of the first rank, the better your chances for living with freedom from AF are. If you choose to live with AF that is progressing to persistent in the hope that you will find the combination of healing elements that works for you, you may be taking a chance that, if you later decide to seek medical treatment, the odds of it being effective will be less because of the delay. This said, we know that the developments in the AF are coming fast now and I imagine that some breakthrough approaches and understandings will happen in the next 5-10 years if not sooner. This is a much better climate than the early to mid-1990’s.
3. Deviant biometrics and risk factor analysis can feed fear. Fear is outside the circle of support for your health. It is also unavoidably human. So, I frequently remind myself of the most fundamental understanding:
"For 100% of people, life is a risk factor.” @medmyths (James McCormack)
And that we live in strange times, comparatively speaking:
"Nothing has changed so much in the health-care system over the past twenty-five years as the public’s perception of its own health. The change amounts to a loss of confidence in the human form. The general belief these days seems to be that the body is fundamentally flawed, subject to disintegration at any moment, always on the verge of mortal disease, always in need of continual monitoring and support by health-care professionals. This is a new phenomenon in our society." —Clifton Meador, MD
I believe that the human heart is a miracle, and that our innate ability to heal is something that we don’t recognize and develop enough. We have evidence abounding of spontaneous remissions of fatal diseases. We know that the single most powerful bias in controlled studies is the placebo effect, and that it is often more effective that most powerful drug. We can hope that there will more exploration of how to rule the placebo effect IN rather than out. So, while the evidence is mounting that making a decision for early intervention of AF on all fronts is prudent for the best long-term outcome, I also feel that going into an ablation or any other healing process requires an alignment of mind and body. Intention matters. Thoughts matter.
"At the end it appears, so also lost her fear of the condition like I did, and then the AF just Ended.”[The Anti-Fib, July 9, 2015, responding on the forum to comments about Fran Ross’s miraculous remission, with dietary changes and quitting all drugs, after 20 years of persistent AF].
I don’t really want to think about how many AF episodes I’ve had. It’s in the hundreds. All but one (prior to my first ablation) ended with when my heart returned to NSR on its own. In recent years, I've always known when this conversion was going to happen, and it would often happen within seconds of my awareness of this feeling. The feeling is ecstatic and as far from fear as I can imagine. I learned to cultivate this feeling and to get to it more efficiently. This worked. And it’s one of the reasons that I knew I was doing better going into this second ablation. I was in a place of much less fear. While I know that some things are clearly out of balance, I have never seen myself as “sick” or “diseased.” I think it matters how you think about what you are dealing with.
I think embracing everything that contributes to your health and well being is the route that has worked best for me. I believe in the power of healing. I also believe that an ablation has provided me with the calm space I need to continue to heal. The two are complimentary, not adversarial. I see the whole thing as a process as much as I can, and living in the moment with the pleasures that each provides is the best way to ensure that the next moment will be what we might wish it to be.
With best wishes and gratitude for the support from this wonderful group,
Rob
I had my second ablation with Dr. Natale on July 9th in Austin, and, as so many have reported, my experience there was excellent. The staff at Texas Cardiac Arrhythmia Institute (TCAI) and at St. David’s were both wonderful. For those of you who are newer to this Forum, I had my first ablation at St. Luke’s in New York City with Dr. Natale in August of 2013 after 19 years of paroxysmal AF that had progressed to persistent (24/7) in the five months prior to that ablation. You can read read more about my experience here: www.afibbers.net.
Since my first ablation in August of 2013, I’ve had a number of breakthrough episodes of AF/flutter as well as some periods of ectopy, which most of the time did not progress to AF. My experience of these episodes was that the ablation was definitely limiting the duration and frequency of the episodes, most of which were, for me, relatively short (2-4 hours). From the beginning (1994), most of my AF episodes have been of several hours duration and leading up to the 2013 ablation, I had episodes that would last three weeks and then resolve for a day or two before going through this cycle again. [Note: if this is you now, please don’t wait as long as I did].
As I’ve written recently here, my experience since the first ablation has been that my quality of life was 90-95% better, and the total time that I was in AF was 5-10%. But I was having some kind of arrhythmia every second or third day, and even if resolved in an hour or two, I knew that it was unlikely to completely resolve (no episodes or greatly reduced number) at this point with the diet and lifestyle efforts I have been employing for 20 years, despite my best efforts. In May and June, I would say that I was actually much better than some of the times around the six-month mark after my first ablation, when I was very anxious about whether the ablation had been a success or not, knowing that I had had a number of breakthrough episodes. With the exception of the persistent AF I was in prior to my first ablation, I have always converted to NSR on my own, and except for a period of about six months when I was on Multaq (after the six-month mark past my first ablation), I’ve not taken AAR drugs or any other kind of drug for AF (I began Warfarin after I became persistent in 2013 and in preparation for the first ablation. I am CHADS = 0, but have been on anti-coagulation since March 2013). Multaq was definitely a mixed experience for me, and I finally elected to stop taking it in late February of this year right before I went to Austin to consult with Dr. Natale there and establish my patient records with TCAI. Dr. Natale approved of my decision to stop Multaq and my second ablation was scheduled for early July (last week).
I expected that with my long history of AF that the second procedure would likely involve isolating the LAA, since this is a frequent source of automaticity. Dr. Natale did not isolate my LAA in the first ablation, but he did create some delay around the LAA, which is more or less “standard” for his PVAI in someone who was moving toward longstanding persistent AF. He noted at the time of the first procedure that anesthesia can sometimes mask areas that otherwise might be ablated. While my experience immediately after the first procedure suggested that “one and done” was a possibility, it became clear after the blanking period that this was not likely.
For the second procedure, the electrical activity is again mapped and all previous lesions from the PVAI are thoroughly checked. In my case, Dr. Natale found one small area around one of the pulmonary veins that had reconnected, and one other new source that was a trigger for the recurrent AF (I don’t have a copy of my ablation report yet, so I don’t have all the technical details). Unusual in my case, I believe, was the fact that he found no source of the arrhythmia coming from the LAA, and therefore in this second procedure chose not to isolate that area. Obviously, this is very good news for me, given the life-long consequences of LAA isolation related to anti-coagulation. Like most here, if not all, I would like to be off all drugs. I was fully prepared to accept that I would wake up to the news that my LAA was isolated, and was more than willing to accept this possibility as a necessary step to eliminating AF.
Dr. Natale said that the involvement of the LAA is more often found among women, but he also cautioned that women often develop AF at a later age than men, so going forward it could be that 10 years down the road it might be necessary to return to the LAA if there was a recurrence of AF. He said that the data for men at my age (64) and history are not yet available, so it’s an open question about the probability of future LAA involvement.
I’ve been feeling quite well, if appropriately tired since returning home on Sunday, and I’ve taken the entire week off from work, as I did after the first procedure. I have a Linq heart monitor implanted subcutaneously as this is the preferred device for Dr. Natale’s office for people with a longer history of AF. The second procedure has been a shorter recovery for me (still in progress) because the duration was shorter and extent of the ablation was less than the index procedure. I was delighted that Dr. Natale did not require a Foley catheter this time around, and this certainly made the recovery easier. I gained four pounds from the water used to cool the catheter during the procedure, but quickly got rid of this after one day of Lasix. Heart rate is around 80, which is not as elevated as the first ablation, and I expected this.
With the hope that they may be helpful and the caution that these opinions and observations are personal and at times subjective, here are some thoughts from my experience of living with AF for over 20 years:
1. AF is complex and multifactorial. The etiology is unknown at present, and the fact that it can occur in otherwise healthy men and women and that it also occurs as a result of other illnesses/diseases has resulted in these two very different groups being conflated in some (most?) studies, since both are presenting with AF. In addition to this distinction, there are many others that make individual responses to suggestions/recommendations about supplements, diet, exercise, etc. highly variable. This has been one of the biggest frustrations for me personally over the years. Reading that a particular nutrient such as magnesium, for instance, is critical in addressing AF, I found that taking the recommended dose in some cases (or simply hoping that more was better) actually triggers AF. It has taken me quite a while to learn to trust my body’s reactions to food and supplements. I am reminded of the wonderful British physician Iona Heath’s cogent comment in answer to the following interview question:
Interviewer: What single unheralded change has made the most difference in your field in your lifetime?
Heath: The creation of an epidemic of symptomless disease based only on deviant biometrics. It is time medicine got back to its core task of attempting to relieve suffering.
Yes. And those of us with AF are suffering. My only point is that ignoring what you actually feel and observe in lieu of any particular set of numbers can create a disconnect, and it may be a distraction from more substantive information that might emerge from considering the appropriate numbers and also how your body reacts to the recommendation. As an article in the most recent AFIB Report suggests, 500 mg. of magnesium may lead to a magnesium deficiency (and other nutrient deficiencies) if your reaction to this dosage is “intestinal hurry.” To ignore this possibility and continue to take the recommended number will ultimately be counterproductive.
2. Most of the medical treatment options for AF reduce or eliminate the condition by addressing the symptoms of the condition, but not the causes of the condition, which remain mostly elusive. I wanted to find something that addresses the cause, because this was the only approach that I could consider a “cure.” There is nothing controversial in my position, and I would assume that it’s what any AF sufferer would want. Time devoted to continued learning about AF and suffering with the condition have led me to what I feel is a more realistic conclusion: while the treatments for AF are imperfect, there are some that are effective, and the increasing evidence is that the condition is not benign, as it was viewed when I was first diagnosed. If anything, the evidence continues to mount that, for most people, AF is progressive and the best chance of eliminating it is to address it early. Of course, I am on the outside of this curve, but I want to believe that the years I spent pursuing the best diet, exercise and stress management plans to create as much of a healing milieu as I could are one of the reasons that I’ve done as well as I’ve done.
If it seems that the emphasis on this site has been more favorable to ablation as a front-line approach to eliminating AF, it is, in my opinion, because ablation technology and experience, especially at the highest level, has improved exponentially in the past decade, and the results now have the greatest promise for long-term elimination of AF. Many of those here who support this position are among the most dedicated and disciplined in pursuing “holistic” approaches to AF, and I would count myself among those who have taken a very disciplined approach to nutrition, exercise, sleep and lifestyle. The issues for anyone for whom this approach does not provide compelling long-term relief (and there are several members of this list who have fortunately found relief from this approach) are: what is the measure by which I determine success, when increasingly the evidence is mounting for early intervention, and how long do I work with this approach alone if it is not providing substantial relief from AF? These are critical questions and the decision is ultimately an individual one in each case. You can live with the condition, or you can seek to eliminate it. If you choose to eliminate it, the medical option that has the most hope for the long term at this point is ablation and the sooner you seek this intervention with an EP of the first rank, the better your chances for living with freedom from AF are. If you choose to live with AF that is progressing to persistent in the hope that you will find the combination of healing elements that works for you, you may be taking a chance that, if you later decide to seek medical treatment, the odds of it being effective will be less because of the delay. This said, we know that the developments in the AF are coming fast now and I imagine that some breakthrough approaches and understandings will happen in the next 5-10 years if not sooner. This is a much better climate than the early to mid-1990’s.
3. Deviant biometrics and risk factor analysis can feed fear. Fear is outside the circle of support for your health. It is also unavoidably human. So, I frequently remind myself of the most fundamental understanding:
"For 100% of people, life is a risk factor.” @medmyths (James McCormack)
And that we live in strange times, comparatively speaking:
"Nothing has changed so much in the health-care system over the past twenty-five years as the public’s perception of its own health. The change amounts to a loss of confidence in the human form. The general belief these days seems to be that the body is fundamentally flawed, subject to disintegration at any moment, always on the verge of mortal disease, always in need of continual monitoring and support by health-care professionals. This is a new phenomenon in our society." —Clifton Meador, MD
I believe that the human heart is a miracle, and that our innate ability to heal is something that we don’t recognize and develop enough. We have evidence abounding of spontaneous remissions of fatal diseases. We know that the single most powerful bias in controlled studies is the placebo effect, and that it is often more effective that most powerful drug. We can hope that there will more exploration of how to rule the placebo effect IN rather than out. So, while the evidence is mounting that making a decision for early intervention of AF on all fronts is prudent for the best long-term outcome, I also feel that going into an ablation or any other healing process requires an alignment of mind and body. Intention matters. Thoughts matter.
"At the end it appears, so also lost her fear of the condition like I did, and then the AF just Ended.”[The Anti-Fib, July 9, 2015, responding on the forum to comments about Fran Ross’s miraculous remission, with dietary changes and quitting all drugs, after 20 years of persistent AF].
I don’t really want to think about how many AF episodes I’ve had. It’s in the hundreds. All but one (prior to my first ablation) ended with when my heart returned to NSR on its own. In recent years, I've always known when this conversion was going to happen, and it would often happen within seconds of my awareness of this feeling. The feeling is ecstatic and as far from fear as I can imagine. I learned to cultivate this feeling and to get to it more efficiently. This worked. And it’s one of the reasons that I knew I was doing better going into this second ablation. I was in a place of much less fear. While I know that some things are clearly out of balance, I have never seen myself as “sick” or “diseased.” I think it matters how you think about what you are dealing with.
I think embracing everything that contributes to your health and well being is the route that has worked best for me. I believe in the power of healing. I also believe that an ablation has provided me with the calm space I need to continue to heal. The two are complimentary, not adversarial. I see the whole thing as a process as much as I can, and living in the moment with the pleasures that each provides is the best way to ensure that the next moment will be what we might wish it to be.
With best wishes and gratitude for the support from this wonderful group,
Rob
|
Re: Back from Austin July 16, 2015 12:53AM |
Registered: 8 years ago Posts: 143 |
Hi Rob,
Thanks for making such a phenomenal post! It's incredibly helpful, on multiple dimensions.
Just one question, about this statement:
I recently consulted with an EP in Bellevue, and asked him if there were any new protocols, hardware, studies, Rx's, or anything along those lines that would make it worth waiting for a while before I had my (first) ablation. He thought about it for a while and said that now that we have force-feedback catheters, and the mapping sw is so good (he claimed within 1mm of accuracy), he thought that there wasn't much room for improvement in the treatment of afib. When I pressed him, he said that the one thing he would like to see is a method of directly visualizing the area being ablated.
I was surprised, because I was under the impression that the EP field is still rapidly evolving.
Do you (perhaps from your interaction with Dr. Natale) have any specific examples of areas of AF which are expected to be improved in the next 5-10 years?
I just started going into afib 2 years ago (I'm 50), so if there's a significant AF improvement on the not-too-far horizon, perhaps I'll delay my ablation for a few years.
-Ted
Thanks for making such a phenomenal post! It's incredibly helpful, on multiple dimensions.
Just one question, about this statement:
Quote
we know that the developments in the AF are coming fast now and I imagine that some breakthrough approaches and understandings will happen in the next 5-10 years if not sooner.
I recently consulted with an EP in Bellevue, and asked him if there were any new protocols, hardware, studies, Rx's, or anything along those lines that would make it worth waiting for a while before I had my (first) ablation. He thought about it for a while and said that now that we have force-feedback catheters, and the mapping sw is so good (he claimed within 1mm of accuracy), he thought that there wasn't much room for improvement in the treatment of afib. When I pressed him, he said that the one thing he would like to see is a method of directly visualizing the area being ablated.
I was surprised, because I was under the impression that the EP field is still rapidly evolving.
Do you (perhaps from your interaction with Dr. Natale) have any specific examples of areas of AF which are expected to be improved in the next 5-10 years?
I just started going into afib 2 years ago (I'm 50), so if there's a significant AF improvement on the not-too-far horizon, perhaps I'll delay my ablation for a few years.
-Ted
|
Re: Back from Austin July 16, 2015 02:01PM |
Registered: 10 years ago Posts: 73 |
Hi, Ted,
Thanks for your reply. I’m glad that my experience was helpful.
Concerning new developments in treating AF, my thoughts were mostly based on the trajectory of the past ten years, and I would see no reason why the pace would slow down, especially given the statistics related to AF that characterize it as an epidemic. I wonder if the rise in numbers diagnosed isn’t related to other epidemics, including obesity and metabolic issues, as well as the newer technologies that make diagnosis much easier (Alive Cor, etc.).
I did not have a conversation with Dr. Natale about new developments on the horizon, but he has a great resource at the Journal of Atrial Fibrillation: Atrial Fibrillation Knowledge Treasure Chest
This “treasure chest” has a number of enlightening videos, including this presentation (KC Heart Rhythm Society) by Dr. Natale from August 2013:
Adjunctive Strategies in Improving the Outcomes of Non-Paroxysmal AF Ablation
I’ve found no better summary of the state of ablation in treating the most difficult and longstanding cases of AF than this 20-minute presentation. He makes it very clear that there is much work to do, and I expect that there will be developments in this area every year going forward.
Concerning your thoughts about waiting for new developments, Dr. Natale’s presentation above has some sobering information about the effectiveness of ablation practiced at the highest level when the patient has longstanding persistent AF. This status (longstanding persistent AF) is certainly best avoided if you may wish to call on an EP for help. There is also more and more evidence, as Shannon has repeatedly emphasized, that points to the fact that staying in NSR is a goal in itself, and ablation can definitely reduce the AF burden, if not eliminate it entirely. From a practical perspective, being “in remission” for the rest of your life has the same quality of life, in my opinion, as “cured.” While a cure by definition would, I think, address the cause(s) of a condition, a treatment that prevents a recurrence of the condition on a long-term basis is a very fine second choice in the absence of the first option.
Using a focal strategy (ablation) for a systemic problem (AF) has its limits, but the creativity and curiosity with which the best EPs are approaching the problem is inspiring, and there is no doubt in my mind that they will learn more and more about the potential causes in pursing this path.
The fundamental question of what causes AF is not one that is easily explored unless you have an established approach that can be profitable for those who would support the research. Alas, this is the place where we find ourselves.
At the same time, we read now that atrial fibrosis in obese patients who lose weight disappears and healthy conductive tissue is restored. And we know that healthy diet, sleep, exercise and stress management improve the quality of life and freedom from disease for everyone. They don’t cost much either, comparatively speaking.
One of my favorite books, God’s Hotel by Victoria Sweet, MD, which is the story of the last almshouse in the US, includes this memorable medieval Latin proverb related to healing:
Even without a doctor
You have three doctors at hand
Dr. Diet, Dr. Quiet, and Dr. Lightheartedness
Best wishes,
Rob
Thanks for your reply. I’m glad that my experience was helpful.
Concerning new developments in treating AF, my thoughts were mostly based on the trajectory of the past ten years, and I would see no reason why the pace would slow down, especially given the statistics related to AF that characterize it as an epidemic. I wonder if the rise in numbers diagnosed isn’t related to other epidemics, including obesity and metabolic issues, as well as the newer technologies that make diagnosis much easier (Alive Cor, etc.).
I did not have a conversation with Dr. Natale about new developments on the horizon, but he has a great resource at the Journal of Atrial Fibrillation: Atrial Fibrillation Knowledge Treasure Chest
This “treasure chest” has a number of enlightening videos, including this presentation (KC Heart Rhythm Society) by Dr. Natale from August 2013:
Adjunctive Strategies in Improving the Outcomes of Non-Paroxysmal AF Ablation
I’ve found no better summary of the state of ablation in treating the most difficult and longstanding cases of AF than this 20-minute presentation. He makes it very clear that there is much work to do, and I expect that there will be developments in this area every year going forward.
Concerning your thoughts about waiting for new developments, Dr. Natale’s presentation above has some sobering information about the effectiveness of ablation practiced at the highest level when the patient has longstanding persistent AF. This status (longstanding persistent AF) is certainly best avoided if you may wish to call on an EP for help. There is also more and more evidence, as Shannon has repeatedly emphasized, that points to the fact that staying in NSR is a goal in itself, and ablation can definitely reduce the AF burden, if not eliminate it entirely. From a practical perspective, being “in remission” for the rest of your life has the same quality of life, in my opinion, as “cured.” While a cure by definition would, I think, address the cause(s) of a condition, a treatment that prevents a recurrence of the condition on a long-term basis is a very fine second choice in the absence of the first option.
Using a focal strategy (ablation) for a systemic problem (AF) has its limits, but the creativity and curiosity with which the best EPs are approaching the problem is inspiring, and there is no doubt in my mind that they will learn more and more about the potential causes in pursing this path.
The fundamental question of what causes AF is not one that is easily explored unless you have an established approach that can be profitable for those who would support the research. Alas, this is the place where we find ourselves.
At the same time, we read now that atrial fibrosis in obese patients who lose weight disappears and healthy conductive tissue is restored. And we know that healthy diet, sleep, exercise and stress management improve the quality of life and freedom from disease for everyone. They don’t cost much either, comparatively speaking.
One of my favorite books, God’s Hotel by Victoria Sweet, MD, which is the story of the last almshouse in the US, includes this memorable medieval Latin proverb related to healing:
Even without a doctor
You have three doctors at hand
Dr. Diet, Dr. Quiet, and Dr. Lightheartedness
Best wishes,
Rob
|
Re: Back from Austin July 16, 2015 02:37PM |
Registered: 11 years ago Posts: 4,226 |
Hi Ted,
Rob makes a lot of excellent points.
What is your AF burden. If it is very light, then waiting might make sense. If it is not, or if it is increasing, then taking care of it, with a top level ablationist, with today's technology would be the operative thing to do.
In my case, my first episode was at age 49, 11 years ago. The first couple of months I had episodes lasting 6-9 hours every 10 to 14 days. Then I had an episode that lasted 2 1/2 months and was converted with 300 mg flec. Subsequent to that, I created my remission program. I quit doing endurance competitions and training. I also started taking potassium, magnesium to bowel tolerance and taurine. I got a prescription for on-demand (PIP) flecainide to convert when the electrolytes failed. Since starting that program, I've had maybe 50 hours of afib in 11 years. Twenty of that was in the first episode after the 2 1/2 month one. Probably still had atrial stunning. Another twenty hours was in 15 months when my control because less good, I thought because of divorce stress, but it turns out from excess calcium due to stress eating wheels of cheese (due to divorce stress).
Of late I've had one hour of afib in two years. This is certainly acceptable to me. If the stats from the divorce 15 months had continued, I'd have signed up for an ablation with Natale right away.
I don't know where the cut off is, but certainly waiting for technology to improve while your afib is becoming persistent or permanent is not a good trade off in my mind.
I have no idea where you are on this scale.
George
Rob makes a lot of excellent points.
What is your AF burden. If it is very light, then waiting might make sense. If it is not, or if it is increasing, then taking care of it, with a top level ablationist, with today's technology would be the operative thing to do.
In my case, my first episode was at age 49, 11 years ago. The first couple of months I had episodes lasting 6-9 hours every 10 to 14 days. Then I had an episode that lasted 2 1/2 months and was converted with 300 mg flec. Subsequent to that, I created my remission program. I quit doing endurance competitions and training. I also started taking potassium, magnesium to bowel tolerance and taurine. I got a prescription for on-demand (PIP) flecainide to convert when the electrolytes failed. Since starting that program, I've had maybe 50 hours of afib in 11 years. Twenty of that was in the first episode after the 2 1/2 month one. Probably still had atrial stunning. Another twenty hours was in 15 months when my control because less good, I thought because of divorce stress, but it turns out from excess calcium due to stress eating wheels of cheese (due to divorce stress).
Of late I've had one hour of afib in two years. This is certainly acceptable to me. If the stats from the divorce 15 months had continued, I'd have signed up for an ablation with Natale right away.
I don't know where the cut off is, but certainly waiting for technology to improve while your afib is becoming persistent or permanent is not a good trade off in my mind.
I have no idea where you are on this scale.
George
|
Re: Back from Austin July 16, 2015 07:29PM |
Admin Registered: 11 years ago Posts: 2,779 |
Apache,
Ten years ago that advice to wait it out cause you've only had AFIB for 2 years might have held a bit more water... But with the enormous advances we have made .. at the most elite levels of the field I have to always underscore ... strongly tips the advantage for NOT waiting too long IF and WHEN you are unable to reestablish consistent NSR by all the natural and Life style and cardio risk factor modification protocols
Ted, consider when I say that this thinking often though very logical sounding, often becomes a slippery slope toward persistent AFIB ... and often just when we were sure we would know just when to go for that ablation before our atria had remodeled too much and possibly passes the tipping point I discuss in the latest AFIB Report, beyond which little to no reverse remodeling of fibrosis and atrial substrate is EVER likely to occur no matter what you do.
What the top tier EPs who doing all the cutting edge research on the front lines at the busiest and largest centers in the world are collectively finding is that there is a definite limit to the ability to achieve structural reverse remodeling after a certain point in the progressive process.
Trying to flip a coin and figure out where you are along in this process, when we also know that fibrosis in many cases is largely genetically influenced where some people are far more prone to early and significant fibrotic changes when others with more favorable genetics are less prone to fibrotic changes, even after longer term exposure to AFIB, turns these 'rules of thumb' kind of mental assumptions into a real crap shoot roll of the dice of speculation and projection.
We have a very strong pathway to follow already, with first step of trying everything in your power to understand and address any and all life style and/or existing CVD co-morbidities one might have contributing to AFIB, as well as address the better diet and supplement protocols we have found very helpful for so many of us and give all that a very dedicated effort for at least 6 months to one year ... ( shorter rather than longer if you have increasingly aggressive AFIB episodes and/or you get little positive response from the first 6 months of collective effort at reducing every risk and trigger you can manage.
THEN go for an ablation at that time while continuing on without missing a beat with all the health improvement methods you have learned and adopted as well especially good eating, exercise, stress reduction, weight loss, BP control and Sleep apnea control.... Doing just and ablation and assuming you can go back to the old ways of living wont cut it long term and is not wise. Use AFIB as the canary in the coal mine signaling a need for a change to adapt to better and more productive health all around.
But doing this ?" Ive got plenty of time to postpone an ablation, if an when, based on the criteria above you can definitely benefit from an expert ablation, is a great way to procrastinate your way right into persistent AFIB and an increased likelihood of needing an LAA isolation to get you into NSR as well.
So many people jumped on the FIRM bandwagon around 4 years ago when it was all the rage and everyone from Dr John to the neighbors next door was touting it as the second coming of ablation technology sure to change everything, even based on the skimpiest and questionable early data,
I know of at least 5 people who postponed their already scheduled ablations in order to take advantage of the only one or two burn ablation promised by the FIRM-ony ablation by its very overly-enthusistic promoters to basically end AFIB.These five I have learned of, and no doubt legions more I have no idea of, have since progressed from relatively garden variety paroxysmal AFIB into fully blown 24/7 persistent AFIB and a tougher process ahead to put the genie back in the bottle.
In the meantime, the first wave of larger scale truly independent research on FIRM has thrown big buckets of cold water over the whole process, and looking very much like a flawed algorithm was behind the early hype.
In summary, try not to outsmart yourself in this long view game ... I sure did and it cost me ... stick with the program and don't mess around too awfully long when IF in spite of you having made a very strong effort to put the genie back in the bottle via natural and self-directed means, it becomes clear you are still going to need an ablation to seal the deal then get it done ASAP by the best ablationist you can possibly arrange for yourself. And go from there with your focus on the here and now.
There will always be the next greatest sure thing breakthrough just around the corner, meanwhile .. tick tock tick tock ....
Shannon
Edited 2 time(s). Last edit at 07/16/2015 07:40PM by Shannon.
Ten years ago that advice to wait it out cause you've only had AFIB for 2 years might have held a bit more water... But with the enormous advances we have made .. at the most elite levels of the field I have to always underscore ... strongly tips the advantage for NOT waiting too long IF and WHEN you are unable to reestablish consistent NSR by all the natural and Life style and cardio risk factor modification protocols
Ted, consider when I say that this thinking often though very logical sounding, often becomes a slippery slope toward persistent AFIB ... and often just when we were sure we would know just when to go for that ablation before our atria had remodeled too much and possibly passes the tipping point I discuss in the latest AFIB Report, beyond which little to no reverse remodeling of fibrosis and atrial substrate is EVER likely to occur no matter what you do.
What the top tier EPs who doing all the cutting edge research on the front lines at the busiest and largest centers in the world are collectively finding is that there is a definite limit to the ability to achieve structural reverse remodeling after a certain point in the progressive process.
Trying to flip a coin and figure out where you are along in this process, when we also know that fibrosis in many cases is largely genetically influenced where some people are far more prone to early and significant fibrotic changes when others with more favorable genetics are less prone to fibrotic changes, even after longer term exposure to AFIB, turns these 'rules of thumb' kind of mental assumptions into a real crap shoot roll of the dice of speculation and projection.
We have a very strong pathway to follow already, with first step of trying everything in your power to understand and address any and all life style and/or existing CVD co-morbidities one might have contributing to AFIB, as well as address the better diet and supplement protocols we have found very helpful for so many of us and give all that a very dedicated effort for at least 6 months to one year ... ( shorter rather than longer if you have increasingly aggressive AFIB episodes and/or you get little positive response from the first 6 months of collective effort at reducing every risk and trigger you can manage.
THEN go for an ablation at that time while continuing on without missing a beat with all the health improvement methods you have learned and adopted as well especially good eating, exercise, stress reduction, weight loss, BP control and Sleep apnea control.... Doing just and ablation and assuming you can go back to the old ways of living wont cut it long term and is not wise. Use AFIB as the canary in the coal mine signaling a need for a change to adapt to better and more productive health all around.
But doing this ?" Ive got plenty of time to postpone an ablation, if an when, based on the criteria above you can definitely benefit from an expert ablation, is a great way to procrastinate your way right into persistent AFIB and an increased likelihood of needing an LAA isolation to get you into NSR as well.
So many people jumped on the FIRM bandwagon around 4 years ago when it was all the rage and everyone from Dr John to the neighbors next door was touting it as the second coming of ablation technology sure to change everything, even based on the skimpiest and questionable early data,
I know of at least 5 people who postponed their already scheduled ablations in order to take advantage of the only one or two burn ablation promised by the FIRM-ony ablation by its very overly-enthusistic promoters to basically end AFIB.These five I have learned of, and no doubt legions more I have no idea of, have since progressed from relatively garden variety paroxysmal AFIB into fully blown 24/7 persistent AFIB and a tougher process ahead to put the genie back in the bottle.
In the meantime, the first wave of larger scale truly independent research on FIRM has thrown big buckets of cold water over the whole process, and looking very much like a flawed algorithm was behind the early hype.
In summary, try not to outsmart yourself in this long view game ... I sure did and it cost me ... stick with the program and don't mess around too awfully long when IF in spite of you having made a very strong effort to put the genie back in the bottle via natural and self-directed means, it becomes clear you are still going to need an ablation to seal the deal then get it done ASAP by the best ablationist you can possibly arrange for yourself. And go from there with your focus on the here and now.
There will always be the next greatest sure thing breakthrough just around the corner, meanwhile .. tick tock tick tock ....
Shannon
Edited 2 time(s). Last edit at 07/16/2015 07:40PM by Shannon.
|
Re: Back from Austin July 17, 2015 02:30AM |
Registered: 8 years ago Posts: 143 |
Gentlemen,
Thanks for all the awesome insights and detailed advice! Much appreciated!
Rob: thanks especially for the link to the Journal of Atrial Fibrillation. That's an awesome site! I've been reading the back issues for the past few hours.... Amazingly useful stuff - the technical disussions in those free online journals have answered a lot of my questions.
Shannon: you make an excellent point about not making the mistake of going back to one's pre-ablation lifestyle, after fixing the afib via a Natale ablation. I've read numerous accounts of athletes getting ablations so they could return to their rigorous sporting life, and am wondering if they're going to get some other physical manifestation of their typical "pedal to the medal" lifestyle... either afib coming back (due to continuing substrate pathology caused by their stressful lifestyle)... or something else (autoimmune disease, etc).
George: re: where I am on the "afib scale"... it's hard to say. In a nutshell, I've gone into afib about 15 times in the last 18 months. Before that I had 49 years of lovely NSR. For the past 3 months, I've gone into afib about once a month.
Of the 15 afib espisodes, 2 or 3 times I self-converted to NSR in less than 3 days (yea!). Typically by taking a sleeping pill, and sleeping in the next day. But all the other times, I've had a cardioversion within 3 days or so (as it typically takes 3 days for them to fit me into the cardioversion schedule). On each of those cardioversions, it's "worked" on the first 200 joule shock (knock on wood).
---- cut here for more details ----
For the majority of my afib episodes, I don't know if I'd have self-converted before the 7 day window (which defines the difference between paroxysmal afib and persistent afib), because I've always opted for a speedy cardioversion.
At first I was nervous about getting repeated cardioversions, but my EP claims there is no cumulative downside, and it's best to get back into NSR asap in order to avoid remodelling. During the 2-3 day wait (to get into the cardioversion schedule), I've "prepped" my physiology in order to maximize the chance of the cardioversion working. In particular, my EP pointed out that she can force anyone to go into afib in the EP lab - by pacing their heart fast enough. But with "non-afib people", once she removes that fast-pacing stimulus, their body's homeostasis will return them to NSR (Normal Sinus Rhythm) quite quickly. In contrast, with "afib people", there is something about them (electrolyte imbalance, heart substrate pathology, autonomic nervous system stress caused by lack of sleep, etc) which allows the heart to stay in afib. So my "pre cardioversion prep" consists of aggressively trying to fix those factors (sleep more, mediate, load up on magnesium, yada yada).
To Shannon's point about afib progressing, I do know that one time I was in afib for about 11 days (my EP couldn't fit me into the cardiovert schedule earlier). So that tells me that there are signs that my afib could be transitioning to persistent rather than paroxysmal).
However... a few afib episodes later, I had an incident where I self-converted to NSR! So that gave me hope (perhaps misguided) that I was (via lifestyle changes) fixing the underlying physiology that caused me to be susceptible to afib.
I was actually almost 100% convinced... to give up my attempt to fix the afib by lifestyle, etc, changes... and just sign up for a Dr. Natale ablation. But then I saw the scary account posted here a few days ago by Ron:
Ron sounded like he was in extremely good shape, and a year younger than me, yet he ended up with some pretty significant damage, despite the fact that he saw the best EP on the planet.
That put a serious damper on my enthusiasm to get an ablation...
And upon further reading, I've uncovered things like cranial lesions and cognitive decline in 13% of paroxysmal AF patients (and 20% of persistent AF patients) as a result of their ablation procedure, likely from microbubbles and particulate matter generated during delivery of energy to the left atrium (EP Digest, 2013)
So it seems like there is a non-trivial chance of unintended consequences when having an ablation.
If I'm able to get anywhere near George's amazing NSR percentages:
via lifestyle changes in the near future, then I am tempted to wait a year or two to see if things improve in terms of AF treatment algorithms/technology.
I've tentatively given myself the deadline of Oct 31st (Halloween) for deciding whether or not to pull the trigger on an ablation. Somehow the notion of "trick or treat" seems appropriate... considering that no medical procedure is guarenteed (the outcome could either be really bad, or really good).
-Ted
Thanks for all the awesome insights and detailed advice! Much appreciated!
Rob: thanks especially for the link to the Journal of Atrial Fibrillation. That's an awesome site! I've been reading the back issues for the past few hours.... Amazingly useful stuff - the technical disussions in those free online journals have answered a lot of my questions.
Shannon: you make an excellent point about not making the mistake of going back to one's pre-ablation lifestyle, after fixing the afib via a Natale ablation. I've read numerous accounts of athletes getting ablations so they could return to their rigorous sporting life, and am wondering if they're going to get some other physical manifestation of their typical "pedal to the medal" lifestyle... either afib coming back (due to continuing substrate pathology caused by their stressful lifestyle)... or something else (autoimmune disease, etc).
George: re: where I am on the "afib scale"... it's hard to say. In a nutshell, I've gone into afib about 15 times in the last 18 months. Before that I had 49 years of lovely NSR. For the past 3 months, I've gone into afib about once a month.
Of the 15 afib espisodes, 2 or 3 times I self-converted to NSR in less than 3 days (yea!). Typically by taking a sleeping pill, and sleeping in the next day. But all the other times, I've had a cardioversion within 3 days or so (as it typically takes 3 days for them to fit me into the cardioversion schedule). On each of those cardioversions, it's "worked" on the first 200 joule shock (knock on wood).
---- cut here for more details ----
For the majority of my afib episodes, I don't know if I'd have self-converted before the 7 day window (which defines the difference between paroxysmal afib and persistent afib), because I've always opted for a speedy cardioversion.
At first I was nervous about getting repeated cardioversions, but my EP claims there is no cumulative downside, and it's best to get back into NSR asap in order to avoid remodelling. During the 2-3 day wait (to get into the cardioversion schedule), I've "prepped" my physiology in order to maximize the chance of the cardioversion working. In particular, my EP pointed out that she can force anyone to go into afib in the EP lab - by pacing their heart fast enough. But with "non-afib people", once she removes that fast-pacing stimulus, their body's homeostasis will return them to NSR (Normal Sinus Rhythm) quite quickly. In contrast, with "afib people", there is something about them (electrolyte imbalance, heart substrate pathology, autonomic nervous system stress caused by lack of sleep, etc) which allows the heart to stay in afib. So my "pre cardioversion prep" consists of aggressively trying to fix those factors (sleep more, mediate, load up on magnesium, yada yada).
To Shannon's point about afib progressing, I do know that one time I was in afib for about 11 days (my EP couldn't fit me into the cardiovert schedule earlier). So that tells me that there are signs that my afib could be transitioning to persistent rather than paroxysmal).
However... a few afib episodes later, I had an incident where I self-converted to NSR! So that gave me hope (perhaps misguided) that I was (via lifestyle changes) fixing the underlying physiology that caused me to be susceptible to afib.
I was actually almost 100% convinced... to give up my attempt to fix the afib by lifestyle, etc, changes... and just sign up for a Dr. Natale ablation. But then I saw the scary account posted here a few days ago by Ron:
Quote
I had an ablation by Dr. Natale on 6/29/15. After the procedure he stated that it was an easy ablation with PVI and some superior vena cava isolation. He expects excellent results. Unfortunately, I am not having an easy recovery.
Two days after the ablation I had a day of chills and have had night sweats every night since (today is post-op day 12). I have not had any fever. I developed some upper respiratory congestion and had a chest X-ray (post-op day 11) that showed atelectasis (partial or complete collapse of the lung) and an elevated right diaphragm suggesting phrenic nerve palsy.
Ron sounded like he was in extremely good shape, and a year younger than me, yet he ended up with some pretty significant damage, despite the fact that he saw the best EP on the planet.
That put a serious damper on my enthusiasm to get an ablation...
And upon further reading, I've uncovered things like cranial lesions and cognitive decline in 13% of paroxysmal AF patients (and 20% of persistent AF patients) as a result of their ablation procedure, likely from microbubbles and particulate matter generated during delivery of energy to the left atrium (EP Digest, 2013)
So it seems like there is a non-trivial chance of unintended consequences when having an ablation.
If I'm able to get anywhere near George's amazing NSR percentages:
Quote
George
Since starting that program, I've had maybe 50 hours of afib in 11 years
via lifestyle changes in the near future, then I am tempted to wait a year or two to see if things improve in terms of AF treatment algorithms/technology.
I've tentatively given myself the deadline of Oct 31st (Halloween) for deciding whether or not to pull the trigger on an ablation. Somehow the notion of "trick or treat" seems appropriate... considering that no medical procedure is guarenteed (the outcome could either be really bad, or really good).
-Ted
|
Re: Back from Austin July 17, 2015 08:47AM |
Registered: 10 years ago Posts: 73 |
Hi, Ted,
The duration of your episodes and the fact that most of them have required cardioversion because you didn't want them to go any longer are important signals, in my opinion, that you are moving toward persistent AF. My own history was much longer and more protracted, but it was only in the last year or two that I had episodes that would last 2-3 days at a time. As long as it wasn't 7 (which is a somewhat arbitrary number), I was convinced I could turn it around.
And then there are those fickle turns that suggest that somehow you are beginning to turn things around, and, of course, we all look for and hope for changes in our patterns that suggest that something we are doing is making a difference that will get us to NSR. It was one of these sudden conversions that convinced me that I might not need help, and, ironically, it was the episode right after this conversion that put me in persistent AF 24/7. The progression is often not linear, so you can't really know where you stand, even though there is a strong desire to find a pattern and have some sense of control. If you have tried various things and they are not producing significant results, say, in the way that George's plan has worked for him, I would personally consider it time to have an ablation. Several of us here stand as personal witnesses to the fact that waiting has consequences.
Concerning the issues of cognitive decline/lesions from the ablation procedure, Shannon and others can probably respond with more data, but my sense is that these concerns have been addressed, at least at Dr. Natale's practice, by the continued use of anti-coagulation through the procedure as well as heparin. And you must consider also the risk of cognitive decline that results from continued AF.
There are times where there are complications related to ablation, but I have not seen any detailed account on this list of complications that did not resolve with some time. I may be wrong, and would welcome any additional evidence.
I think the kind of back and forth about the procedure you are experiencing is common. I certainly felt this way for a while. What you will mostly read on this list, and this includes my experience, is that, after having a procedure or sometimes two, as in my case, the more prevalent feeling is I wish I had done it sooner. Of course, this is a decision that only you can make, and you should be convinced that it's the right decision. I'm sharing my experience and perspective with the hope that it will be helpful.
Best wishes,
Rob
Edited 1 time(s). Last edit at 07/17/2015 01:26PM by rob50.
The duration of your episodes and the fact that most of them have required cardioversion because you didn't want them to go any longer are important signals, in my opinion, that you are moving toward persistent AF. My own history was much longer and more protracted, but it was only in the last year or two that I had episodes that would last 2-3 days at a time. As long as it wasn't 7 (which is a somewhat arbitrary number), I was convinced I could turn it around.
And then there are those fickle turns that suggest that somehow you are beginning to turn things around, and, of course, we all look for and hope for changes in our patterns that suggest that something we are doing is making a difference that will get us to NSR. It was one of these sudden conversions that convinced me that I might not need help, and, ironically, it was the episode right after this conversion that put me in persistent AF 24/7. The progression is often not linear, so you can't really know where you stand, even though there is a strong desire to find a pattern and have some sense of control. If you have tried various things and they are not producing significant results, say, in the way that George's plan has worked for him, I would personally consider it time to have an ablation. Several of us here stand as personal witnesses to the fact that waiting has consequences.
Concerning the issues of cognitive decline/lesions from the ablation procedure, Shannon and others can probably respond with more data, but my sense is that these concerns have been addressed, at least at Dr. Natale's practice, by the continued use of anti-coagulation through the procedure as well as heparin. And you must consider also the risk of cognitive decline that results from continued AF.
There are times where there are complications related to ablation, but I have not seen any detailed account on this list of complications that did not resolve with some time. I may be wrong, and would welcome any additional evidence.
I think the kind of back and forth about the procedure you are experiencing is common. I certainly felt this way for a while. What you will mostly read on this list, and this includes my experience, is that, after having a procedure or sometimes two, as in my case, the more prevalent feeling is I wish I had done it sooner. Of course, this is a decision that only you can make, and you should be convinced that it's the right decision. I'm sharing my experience and perspective with the hope that it will be helpful.
Best wishes,
Rob
Edited 1 time(s). Last edit at 07/17/2015 01:26PM by rob50.
|
Re: Back from Austin July 17, 2015 11:22AM |
Registered: 6 years ago Posts: 18,881 |
|
Re: Back from Austin July 17, 2015 06:57PM |
Registered: 11 years ago Posts: 4,226 |
Hey Ted,
Have you considered PIP (on-demand) flecainide for conversion? If it worked for you like it has for me (1-2 hours to convert typically), it would cut the amount of time you spend in afib significantly. After the 2 1/2 month episode, I've converted every episode with flec. I did not want to take a chance on a 2 1/2 month episode again.
The minute I realize I'm in afib, I chew up my flec (awful taste) and wash down with water. Then I get horizontal and wait for blessed NSR to reappear.
George
Have you considered PIP (on-demand) flecainide for conversion? If it worked for you like it has for me (1-2 hours to convert typically), it would cut the amount of time you spend in afib significantly. After the 2 1/2 month episode, I've converted every episode with flec. I did not want to take a chance on a 2 1/2 month episode again.
The minute I realize I'm in afib, I chew up my flec (awful taste) and wash down with water. Then I get horizontal and wait for blessed NSR to reappear.
George
|
Re: Back from Austin July 18, 2015 08:10PM |
Registered: 8 years ago Posts: 143 |
Quote
Have you considered PIP (on-demand) flecainide for conversion?
Yup. Unfortunately... I had Lyme disease in the 1990's and a stress echogram showed some scarring in my ventricle (which the cardiologist thinks was caused by Lyme carditis). For the PIP, my cardiologist said that they require a 3-day hospital stay, to monitor me to make make sure the PIP didn't cause a ventricular tachycardia/fibrillation (which are much more serious than atrial fibrillation). The fact that I have scarring in my ventricle makes her think that PIP would be a bad idea. She said she discussed my case with the other cardiologists at the UW Medical Center, and they concur.
In the meantime, the more research I do, the more convinced I am to just go for the "big hammer" approach (ablation). And if I do, Dr. Natale is at the top of the list.
|
Re: Back from Austin July 19, 2015 11:05AM |
Registered: 10 years ago Posts: 73 |
Hi, Ted,
I, too, had Lyme disease last summer. Fortunately I was the classic presentation (bull's eye). I knew I had been bitten and found the tick. I got Doxycycline the first day of symptoms, so the treatment was about as prompt as it could have been after it was clear that I had the disease. I had a very rough ride for the next few days with lots of AF, which is not surprising. Dr. Natale felt that Lyme may have been the reason for the new focal point that he found with my second ablation. Who knows?
Related to some of your concerns and questions above about ablation, I think you would find this video by Dr. John Day helpful: Can Dementia be Prevented in AF Patients?.
At about 14:45 in the video Dr. Day begins a summary of a study of about 4200 ablation patients at Intermountain Healthcare, which is a major AF center. There were two very large control groups (one with and one without AF) and there was a three-year follow up period. Median age in the study was 65. This summary is encouraging, since many of the risk factors that AF patients have (mortality, stroke risk, dementia) return to results that are similar to those who have never had AF after successful ablation of AF. He also talks about procedural practices that have essentially eliminated post-precedural stroke and silent stroke with AF ablation. Dr. Natale was a pioneer in this area, and he follows these practices, as I understand it, as well as the use of heparin during the procedure, which is tightly controlled.
Just wanted to share some things that I hope will be encouraging about outcomes with ablation. None of us, as far as I can tell from reading here, take the procedure lightly. But in the hands of a highly skilled operator and a facility where the practice is refined, the risks are low in comparison with other medical procedures. And there is the concern if you choose not to live with AF -- and this is a choice -- about how long you can go in the progressive remodeling before this same procedure will be increasingly less likely to restore NSR. This is the crux of the decision making process. While every case is individual, and some things are not fully understood, what is clear is that longstanding persistent AF is the thing you want to avoid if you are holding ablation as an option for returning to NSR.
Best wishes,
Rob
I, too, had Lyme disease last summer. Fortunately I was the classic presentation (bull's eye). I knew I had been bitten and found the tick. I got Doxycycline the first day of symptoms, so the treatment was about as prompt as it could have been after it was clear that I had the disease. I had a very rough ride for the next few days with lots of AF, which is not surprising. Dr. Natale felt that Lyme may have been the reason for the new focal point that he found with my second ablation. Who knows?
Related to some of your concerns and questions above about ablation, I think you would find this video by Dr. John Day helpful: Can Dementia be Prevented in AF Patients?.
At about 14:45 in the video Dr. Day begins a summary of a study of about 4200 ablation patients at Intermountain Healthcare, which is a major AF center. There were two very large control groups (one with and one without AF) and there was a three-year follow up period. Median age in the study was 65. This summary is encouraging, since many of the risk factors that AF patients have (mortality, stroke risk, dementia) return to results that are similar to those who have never had AF after successful ablation of AF. He also talks about procedural practices that have essentially eliminated post-precedural stroke and silent stroke with AF ablation. Dr. Natale was a pioneer in this area, and he follows these practices, as I understand it, as well as the use of heparin during the procedure, which is tightly controlled.
Just wanted to share some things that I hope will be encouraging about outcomes with ablation. None of us, as far as I can tell from reading here, take the procedure lightly. But in the hands of a highly skilled operator and a facility where the practice is refined, the risks are low in comparison with other medical procedures. And there is the concern if you choose not to live with AF -- and this is a choice -- about how long you can go in the progressive remodeling before this same procedure will be increasingly less likely to restore NSR. This is the crux of the decision making process. While every case is individual, and some things are not fully understood, what is clear is that longstanding persistent AF is the thing you want to avoid if you are holding ablation as an option for returning to NSR.
Best wishes,
Rob
|
Re: Back from Austin July 19, 2015 05:36PM |
Admin Registered: 11 years ago Posts: 2,779 |
Apache,
Please do Not make the mistake of forgoing an ablation based on Rons rougher than usual recovery, occasionallu that happens but every indication is that he will make a full recovery in short order and his odds of ongoing success are very good!
His experience, while not unique is the exception rather than the rule and in discussing his details with him, its quite possible him very active exercise tendencies prirot to his ablation put a damper on his adrenal function which in turn can make the stress from any invasive surgical procedure more challenging in the recovery phase. Ive seem it too many times that those with a fine line they have often crossed between doing too much and doing the right amount for good fitness and health often have lower stress reserves than those who have not regularly crossed the line into excessive stress on the whole systemt including endocrine glands from pedal to the metal. I suspect much of Rons lingering tiredness was due in part to that, just as older folks who have reduced similar capacity are prone to slower post ablation recoveries but the do recover.
Also the issue about post ablation Silent cerebral ischemia I have covered extensivelin over the past two years of AFIB Reports and here in the forum and the concern you saw reported for some such micro bubble and micro emboli from the ablation itself has been shown to be vanishedly low level such as no more than one to two tiny white spots on DeMRI in the 24 to 48 hours post ablation which almost invariably resolve and cannot be seen on Flare MRI a week or two later meaning rarely is any lasting scar resulting from those small lesions made during ablations like those by Dr Natale and his teams using the continuous unbroken peri-procedural anticoagulation method they pioneered.
Ablationist who use broken OAC and with single sheaths through which there are multiple catheter exchanges into and out of the left atrium during the procedure and who do not increase ACT (activated clotting time) of 300seconds+ just before transeptal puncture have been shown now in several studies to produce much higher levels of these SCI lesions during ablation as is the case with the multi-contact non-irrigated catheter that hardly anyone uses anymore.
But even in these cases of far greater potential for more of these SCI lesions from the methods listed in the paragraph above, than the very few and transient tiny asymptomatic spots found during an ablation that you can get with a Natale ablation: that method of ablation anti-coaguilation combined with irrigated catheters is STILL by far the best odds of eliminating, or greatly reducing, the number one cause of true long term accumulation of these individually asymptomatic tiny white lesions from either micro emboli or micro bleeding but which accumulate to more symptomatic long term outcomes from ongoing poorly controlled AFIB!
In this case, having an expert ablation by an EP like Natale whose studies as part of significant international centers trials, showed conclusively that their continuous peri-procedural OAC before, during and after the ablation while insuring ACT of 300 + sec prior to puncture is the very best way one can stop the accumulation of these individual tiny and asymptomatic but over time collectively anything but asymptomatic and contributing to significant risk of dementia, small brain infarct or micro bleeds, is through such an ablation process!
Thus, please do not make the mistake of avoiding such an ablation process simply over the fear of a few potential tiny spots due to the procedure it self when the result of s success process will eliminate most all ongoing build up of just such SCI over the years leading to possibly very severe dementia consequences.
I see that you have been very eager to do lots of reading and research in recent months since you started considering an ablation, which I salute and encourage. Just be very careful of jumping to conclusions too quickly until more of the underlying nuance of al this starts to set in and that can take a long while to happen as this is a complex field with as many layers to understanding as there is to peeling an onion.
Myself and some other long timers here can help you through this process, but this instance with your concern over micro bubbles created during an ablation creating tiny lesions in the brain is exactly the opposite news from this story. Its the best form of ablation process with top tier operators that will give you the greatest margin of safety long term over this very same potential problem of long term SCI accumulation simply created by too much AFIB overtime!
It is also a perfect representation of the old Hindu analogy of sometimes 'needing a very small needle to remove a much bigger thorn!'
Shannon
Edited 1 time(s). Last edit at 07/19/2015 06:13PM by Shannon.
Please do Not make the mistake of forgoing an ablation based on Rons rougher than usual recovery, occasionallu that happens but every indication is that he will make a full recovery in short order and his odds of ongoing success are very good!
His experience, while not unique is the exception rather than the rule and in discussing his details with him, its quite possible him very active exercise tendencies prirot to his ablation put a damper on his adrenal function which in turn can make the stress from any invasive surgical procedure more challenging in the recovery phase. Ive seem it too many times that those with a fine line they have often crossed between doing too much and doing the right amount for good fitness and health often have lower stress reserves than those who have not regularly crossed the line into excessive stress on the whole systemt including endocrine glands from pedal to the metal. I suspect much of Rons lingering tiredness was due in part to that, just as older folks who have reduced similar capacity are prone to slower post ablation recoveries but the do recover.
Also the issue about post ablation Silent cerebral ischemia I have covered extensivelin over the past two years of AFIB Reports and here in the forum and the concern you saw reported for some such micro bubble and micro emboli from the ablation itself has been shown to be vanishedly low level such as no more than one to two tiny white spots on DeMRI in the 24 to 48 hours post ablation which almost invariably resolve and cannot be seen on Flare MRI a week or two later meaning rarely is any lasting scar resulting from those small lesions made during ablations like those by Dr Natale and his teams using the continuous unbroken peri-procedural anticoagulation method they pioneered.
Ablationist who use broken OAC and with single sheaths through which there are multiple catheter exchanges into and out of the left atrium during the procedure and who do not increase ACT (activated clotting time) of 300seconds+ just before transeptal puncture have been shown now in several studies to produce much higher levels of these SCI lesions during ablation as is the case with the multi-contact non-irrigated catheter that hardly anyone uses anymore.
But even in these cases of far greater potential for more of these SCI lesions from the methods listed in the paragraph above, than the very few and transient tiny asymptomatic spots found during an ablation that you can get with a Natale ablation: that method of ablation anti-coaguilation combined with irrigated catheters is STILL by far the best odds of eliminating, or greatly reducing, the number one cause of true long term accumulation of these individually asymptomatic tiny white lesions from either micro emboli or micro bleeding but which accumulate to more symptomatic long term outcomes from ongoing poorly controlled AFIB!
In this case, having an expert ablation by an EP like Natale whose studies as part of significant international centers trials, showed conclusively that their continuous peri-procedural OAC before, during and after the ablation while insuring ACT of 300 + sec prior to puncture is the very best way one can stop the accumulation of these individual tiny and asymptomatic but over time collectively anything but asymptomatic and contributing to significant risk of dementia, small brain infarct or micro bleeds, is through such an ablation process!
Thus, please do not make the mistake of avoiding such an ablation process simply over the fear of a few potential tiny spots due to the procedure it self when the result of s success process will eliminate most all ongoing build up of just such SCI over the years leading to possibly very severe dementia consequences.
I see that you have been very eager to do lots of reading and research in recent months since you started considering an ablation, which I salute and encourage. Just be very careful of jumping to conclusions too quickly until more of the underlying nuance of al this starts to set in and that can take a long while to happen as this is a complex field with as many layers to understanding as there is to peeling an onion.
Myself and some other long timers here can help you through this process, but this instance with your concern over micro bubbles created during an ablation creating tiny lesions in the brain is exactly the opposite news from this story. Its the best form of ablation process with top tier operators that will give you the greatest margin of safety long term over this very same potential problem of long term SCI accumulation simply created by too much AFIB overtime!
It is also a perfect representation of the old Hindu analogy of sometimes 'needing a very small needle to remove a much bigger thorn!'
Shannon
Edited 1 time(s). Last edit at 07/19/2015 06:13PM by Shannon.
|
Re: Back from Austin July 19, 2015 05:48PM |
Registered: 8 years ago Posts: 143 |
Hi Rob,
Thanks for the additional info and the video link!
Just curious - do you have any issues playing the videos on JAFIB web site? I've had numerous issues with the videos halting suddenly, and then going back to the beginning. I'm running both Windows 7 and XP, and I've tried all 3 major browsers (Firefox, IE, Chrome). They all have this issue (although Chrome works a bit better).
In the end, I've resorted to using IDM ("Internet Download Manager") to download the video's as a .flv file, and then playing it back from a local copy on my PC using the VLC media player.
I'm just wondering if I'm the only one having this problem playing the JAFIB videos...?
Cheers,
-Ted
Thanks for the additional info and the video link!
Just curious - do you have any issues playing the videos on JAFIB web site? I've had numerous issues with the videos halting suddenly, and then going back to the beginning. I'm running both Windows 7 and XP, and I've tried all 3 major browsers (Firefox, IE, Chrome). They all have this issue (although Chrome works a bit better).
In the end, I've resorted to using IDM ("Internet Download Manager") to download the video's as a .flv file, and then playing it back from a local copy on my PC using the VLC media player.
I'm just wondering if I'm the only one having this problem playing the JAFIB videos...?
Cheers,
-Ted
|
Re: Back from Austin July 19, 2015 07:30PM |
Registered: 10 years ago Posts: 73 |
Hi, Ted,
I use a Mac, but I have noticed that things get messed up with the transport unless you let the entire video load in the buffer before you moving the transport around to a manual location. Sounds like your solution to download the videos and play them locally is a good workaround.
Best wishes,
Rob
I use a Mac, but I have noticed that things get messed up with the transport unless you let the entire video load in the buffer before you moving the transport around to a manual location. Sounds like your solution to download the videos and play them locally is a good workaround.
Best wishes,
Rob
|
Re: Back from Austin July 22, 2015 07:14PM |
Registered: 9 years ago Posts: 171 |
Sorry, only registered users may post in this forum.