I can understand where you are coming from, but frankly, unless you personally know Dan, or are telepathic, how can you possibly know his motives for writing his post. Your accusation is one possibility, as is also the motive of trying to inform prospective ablation patients. I dont know him and have not read his book, but i wouldnt slur him by attributing greed as the drive behind his contribution. After what happened to his wife, maybe he is just trying to help others.
Gathering as much info as poss, inc a wide source of expert opinions, before having any operation/procedure with risks attached, is surely a wise thing to do. To dismiss someone's work without reading it because it feels scary is hardly objective. Sometimes the truth is scary. And doctors themselves ( well intentioned ) often use scare tactics to influence a patients decision.
I would never discourage anyone from having an ablation, but neither would i encourage anyone to go ahead. Encouragement should be toward the patient becoming as well informed as poss as to the risks and outcome, so as to enable them to feel as confident as poss when deciding if it is right for them.
Thru searching over 2 years and spending many hours on medical sites as well as attending several conferences at Birmingham, and having the opportunity to speak privately with cardiologists and EPs, i realised the info/advice i had received from my consultant was selective and i was not given the full picture. Reading posts on forums around the world I suspect others have experienced the same.
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reevo
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I did post on that original post as well, so I am happy to reply with my OPINION to you and what has happened.
Let me give you some OPINIONS as to why I have not read, nor will read Dan Walter's book
1) His wife's ablation was 11 years ago, in EP technology terms that's an aeon ago, things have changed so much since.
2) I fully understand and even sympathise with his grief, but does that make him a good researcher? an independent view on the very complex and highly changeable world of EP, in my opinion No.
3) I don't live in the US, I live in the UK where the basic premise of Dan's book about money driven factions does not exist in the same way (I am not saying we are not money driven but that the Doctors do not get the money so the pressure is a very different one)
4) In fact, and I have no wish to start an argument about this, it could be argued that the whole basis of insurance driven medicine in the US encourages and drives "money driven factions" but that argument would apply even to a tonsillectomy, and I have no wish to fall out with the supporters of that form of medicine.
5) It's the method of posting, not "here is another opinion please feel free to take it in" but instead "if you have not read this there are facts here not available anywhere else" I disagree, nothing I have seen or read around his book shows any facts that are not widely available in most if not all A Fib sites.
6) One of the real challenges we have on this forum is that many people come here soon after being diagnosed, scared and looking for reassurance and some facts, does being exposed to Dan Walters offer a balanced view of ablation and it's risks and rewards?
Lastly, and here I realise I may be in minority, I would not have pulled his post, I am a great believer in what Voltaire had to say
"I do not agree with what you have to say, but I'll defend to the death your right to say it."
Thank you for posting Reevo, I value your contribution, and wish you the very best.
Thanks for sharing your opinion and you raise important points.
But saying, and i quote, " nothing I have seen or read around his book shows any facts that are not widely available in most if not all A Fib sites", reveals that you have only listened/read what others are saying about the book - ie second hand criticisms - it cant be your own criticism because you havent read the contents for yourself, so how can you know there are not facts within it that are not generally found on other a/fib sites?
As i say, i have not read it or intend to do so, as im satisfied to peruse literature and research projects around the world.
To be honest Ian, if you have not read the book your only valid comment on its contents can only be 'no comment'.
You are right, I have not read his book, but if it contained any crucial information that we as A Fib sufferers NEED to know, I am fairly sure that a reader would already have posted it to the forums, for us all to be aware of and discuss. This book is quite old now.
The point that IMO you are missing, is that if Mr Walters wants to contribute to our knowledge of A Fib, then agree or not agree with it, I am sure all the forum members would welcome it. We could examine it and then make up our own minds.
If however (as he did) wants to come into the forum and post a link to his book, saying you all need to read this in the manner of "the world will end tomorrow if you don't" then again IMO he is not contributing to either my knowledge or the knowledge of anyone on this forum.
So I don't agree that my only valid comment is no comment, as long as I am very clear that I have not read the book, nor intend to (as with yourself) then my comments are as valid as the next persons, unitl such time as Mr Walters makes a post to the forum which contributes.
Didn't want you to think that I had just ignored your post. I'll send you a private message and if you would like to discuss it more I'd be happy to. I think this would be better handled in a private forum instead of a public one. I'm heading out for a while (yardwork) but will write you when I return.
I dont understand why you think this discussion is not appropriate on a public forum. What is there to hide? i cant think of one reason, maybe you can enlighten me.
All medical procedures have risks attached; as far as I'm aware we have to take that on board on a " like it or not " basis. The post had been deleted before I had chance to read it so still can't make any comments on its content ; but I feel that to read or not to read is an individual choice....not one that someone else should make for me or anyone else .
As you all are aware doctors/consultants make a patient evaluation regarding their ability to know everything about their illness and risks ! This was brought home to me when my husband was diagnosed with cancer (bowel) which had spread to liver and bones ....we had to fight to get all the risks faced re treatment and long term prognosis. We were eventually told all of them ....but were also told that not all people can cope with the "whole truth" psychologically, I cannot argue this point as everyone is different and as such should be treated accordingly.
I have gleaned info re AF from the various doctors etc but most has come from reading forums
and talking on here...... from where I stand "fear" is what frightens me...& knowledge reduces that so much ...for me . But I guess not for all.
Here's hoping that one day very soon the new procedures under test at this time by Dr. Sanjiv Narajan will be the cure we've all been praying for.... have listened to him talking ...sounds good ...fingers crossed.
As in all things I can only speak from my own perspective ....but I have to say that I have known people to frightened to face the truth head on. Not everyone has the strength to cope with all that life chucks at you ; we all " know " the truth about our ability to cope but knowing and admitting it to ourselves is another matter entirely.
You sound much like me ...the fear is in " not knowing "......however not everyone can deal with that ...some truly are unable to face it.
My thoughts on posts are very simple ...I am a reasonably intelligent person and enjoy reading other people's experiences.... soaking up knowledge then thinking it over & take the bits I find that are for me, I have no right to criticise something I've not read......... but that's MY choice .
AF is a damn nuisance at the very least ; it changes your life and your perception of what is really important in it; but life is still a gift to be enjoyed and lived to the full. We are all unique people ...no -one is the same ....just as well as I don't think the world could cope with two of me...
I totally agree with you that some people are too frightened to want the truth/facts etc., and i feel for them.
My only point is, and i'll try to make it clearer, is that i believe that the doctor should not make that judgment - as i said on what basis can he/she know for certain the inner perception of the patient. Its possible that they may be somewhat fearful on being told the truth, but later at home be grateful for the options available, based on the information they have received.
On the other hand if the fearful patient asks NOT to be told the whole truth then must be respected and complied with on the basis of compassion. Then the patient has knowingly handed over the decision to the doctor - no problem - in other words the patient has decided to let the doctor decide.
That's why i find the internet so valuable, as it enables those who want to, to see the opinions/advice of other doctors around the world which may and often does differ from the advice they have received from their own.
hi skary. what is the truth, Af is scary I know as I have it, I have had 4 cardioversions and all work.
lucky for me I take it once a year. how far do you want the doctor;s to tell the truth about your illness. I was told that I would need a pacemaker by one doctor where as another told me as my AF only occured once a year, cardioversion was okay. He was open about what AF is and the pitfalls of any treatment I would receive ( pacemakers )
I am an elder gentleman who for 65 years of my life never saw the inside of an hospital. nor did I visit my doctor unless I really had to, I never smoked nor did I drink a lot, now I try to stay calm and get on with my life. I take at least two holidays a year and we look after two grandchildren three days a week. AF is not curable
I know that and most of the people who read this foram knows it. I have not read the book and don't intend to do so, All the information you want is in this foram.
"Yes it is scary but life is still there to be lived as best we can. I prefer to know exactly what can happen and the information about AF is great on here. I too am 65 ...and apart from arthritis ,underactive thyroid and IBS I have been fairly healthy and active.
As to whether AF is curable the link to hear Dr.Sanjiv Narayan was from this site...... and gave me food for thought & hope for the future,
I understand both sides of this post but I do think that the responses on here would of been similar if the post was not pulled. My first talk about Ablation Back in the 1990's it had a 80% fail rate, I was told. Once this improved I was in theatre for 3 hours and hospital 8 days the second Ablation in theatre 7.5 hours and in hospital 10 days (blood infection?) my Third is in the next few days and I am in a day unit. Things have change vastly but a choice of content for discussion and information is paramount. if a summary was posted as a blog would rthat of been pulled also? I have been told I have a 7% risk of stroke from my procedure, but without the hope it will work this time and may give me a better life I am willing to take the risk.
Exactly Offcut.... it's so easy to imagine what it is like for people who have been unfortunate to have AF.... The main thing is to arm yourself with as much information as possible then make an informed decision. Nothing is ever straightforward least of all AF.
When I was first diagnosed 7 years ago I was made to feel AF was just a ripple in my life: it was a shock to learn however that it's not. The best armour to most things is knowledge ....& here and on other sites there is so much to read ...helps enormously .
As to the reaction towards the deleted blog.... mine is one of mystery really; if I didn't agree with it .....then would say so but since I've not read it....can't honestly say.
My consultant thinks my circumstances would limit the success rate for ablation to 50-60%... but as I know the risks- it's my body and my quality of life at stake. We shall see what the future holds .
Firstly thank you for posting a comment rather then the previous approach. Personally, and I am not an adminstrator of this site so do not speak for them, I am more than happy for anyone to post their findings and their opinions. I think there is more than sufficient balance for us to be able to come back and forth as long as the debate is conducted in an adult and more importantly respectful manner.
So to your point if I may
Firstly I could not make your link work, it gives me an "Apache Tomcat" error, from my limited IT knowledge, this could be a Mac/PC divide perhaps others can get through.
However others have commented on the statement from Dr Redberg, and I think I like this one best
And for me the summary here just about completely sums up the difference between those who talk about A Fib, and those who have either had it or currently have it
QUOTE
I hear you about AF ablation. It is a big hammer. It bothers me doing all those burns and freezes. But the disease sucks. And so do the supposedly safer medical options. So far, I see four themes of AF ablation:
1. There is a (strong) hypothesis that AF ablation improves long-term outcomes.
2. When done skillfully, there is little signal of long-term harm.
3. There is a high likelihood of symptom relief.
4. There is a dearth of other good alternatives.
So yes, I think AF ablation is an especially reasonable and compassionate therapy to discuss with patients.
END QUOTE
And I think this article might be written by Dr John Mandrola, am I right?
In any case I agree with his conclusions
I know you do not
It's great that the world is made up of different opinions, that's what makes us ALL learn and move forward
May I call you Dan?, firstly and I apologise for not saying this the first time, I do offer my condolences on the loss of your wife.
You will be aware I only want people to have the best facts possible open to them, the problem with A Fib, as you rightly say is that the drug treatments, especially the rhythm control drugs such as Amiodarone, can have some really awful side effects and certainly many doctors do not want their patients on these longer term.
So what choices do they have left?, Ablation for many offers a potential solution and Yes I agree they need to have the facts laid out for them in the best possible way so they can make the best decision.
I also agree that the seeming dearth of a long term peer reviewed study is what is currently making you so nervous about the procedure, and the potential side effects and efficacy.
1) The changes to ablation and the methodology and techniques have been so substantial over the past ten years, and potentially are going to continue to change very very rapidly, that any study done say 3 years ago would already be out of date.
2) I agree John Mandorla is an ablationist (Gosh I sound Pro Life) but if I needed an ablation he'd be in my top five of choices if I were lucky enough to have that choice.
3) It's a very tough decision, and it's a personal one for any patient, my problem right now is that without the data neither scaring people nor reassuring them would appear to be the right approach.
Personally I have not had an ablation, nor at the moment am I being offered one, and as a long term permament sufferer of AF it would appear that the odds are stacked against me even if I do. Most of the comments on this forum and others come from personal experiences, they come from sufferers who have had their lifes changed from paroxysmal A Fib to a real and measurable change of lifestyle, OK maybe not always after the first ablation, sometimes not after the second.
Let me ask you the question directly
A person comes to the forum scared, uninformed usually, they have been diagnosed with A Fib and have suffered several very scary attacks which may or may not have hospitalised them. Their Cardio has talked to them about an ablation
What do you think they should be told? And your answer does need to take into account their potentially fragile state and (I can certainly testify to this) the awful fear they are feeling within the first months of diagnosis.
I also am asking you to take into account that the majority on this forum are UK based, so insurance and money based decisions are minimised (note I did not say avoided totally)
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Ablation decision and fears
How many people are still on medication (other than anticoagulant) after ablation?
New boy go gentle
Blood thinners or not?
1st day after Ablation for AVNRT
