Ablation time frame - diagnosis to procedure

[JoBrien]

Hi. My husband has AF and been back and forth for nearly 4 years now. 3 cardio versions , amiodarone which has now taken its toll on his thyroid and is undergoing treatment for that.

Is there a time frame from diagnosis of AF for an ablation to actually be helpful? All we have had over the years is come back in 3 months , lose some weight etc. Well my husband isn’t grossly overweight and is a 6ft 2 man. In one visit the consultant just told him how good it is to have a personal trainer!!

Now he won’t do anything because of the thyroid issue. We repeatedly asked for amiodarone to be switched and his answer was ‘well you would feel worse without it’.

I’m just wondering if anyone knows if there is a ‘time frame window’ of an ablation being effective .

Many thanks for your advice

Joanne

[BobD Volunteer]

Firstly it must be remembered that any and all treatment for AF is fundementally for quality of life (QOL) and that provided rate is well controlled and stroke risk dealt with there is no detremental outcome from any treatment (apart from any drug ineractions or affects.)

It does make quite a difference seeing the right kind of doctor which is why we recommend appointment with an electropysiologist (EP) (an electrician) who specialises in rhythm disorders rather than a general cardologist or plumber as we call them.

Regarding time frame there really isn't one although many EPs feel that early intervention by ablation stands the best chance of success. Yes life style is important and just stating height doesn't deal with BMI which is important. Most recent research shows that a healthy BMI of less than 26 (ie 25 or lower) often reduced AF burden as does a move away from excess meat and procesed food to a more plant based diet, and of course no alcohol or caffeine.

The fact that your husbad has had succesful cardioversion does indicate that ablation may well be helpful but it must be considered part of ongoing treatment as cure is not a word generally connected with AF. I suggest that you ask for referral to an EP to discuss future options.

[Physalis in reply to BobD]

Except by me! This from Harvard Medical School "The overall success rate for catheter ablation is about 75%. Sometimes, people undergo a second procedure if the first one doesn't work, which boosts the success rate to nearly 90%.

Surely it's better than taking drugs for the rest of your life.

[BobD Volunteer in reply to Physalis]

I was AF free for eleven years post my thrid ablation, technically still am but other arrhythmias came around about three years ago. Success has been defined at AF free after five years if you want to call that a cure?

[Physalis in reply to BobD]

Yes, I understand that. I know that it can come back but to dismiss it as only improving quality of life is not fair. The fact is that the members of this forum who have had ablations have either gone or not left because it didn't cure them. The 25% for whom ablation didn't work are on a whole range of medications.

It's a shame if some people are put off having it because they are told it is only for quality of life, not a cure.

The same is true of cancer treatment, you are only considered cured if it doesn't come back in five years. However, a lot more people are cured of cancer now than they used to be. When I was young, a child with leukaemia always died and cancer was a death sentence.

[BobD Volunteer in reply to Physalis]

Sorry I only ever quote Prof Schilling.

[Physalis in reply to BobD]

Where does he say that? He seems to talk about success. "Success is defined as a elimination of symptoms and no AF on patient ECG monitoring"

For paroxysmal AFib in 2018 his results are 'first time complete success 63%, complete success after repeat procedures 76% at 18 month follow-up.

Actually, I think I saw a video by Sanjay Gupta recorded five years ago where he said that ablation was not a cure but just for quality of life. But he is not an electrophysiologist

[BobD Volunteer in reply to Physalis]

A talk to doctors I saw. We have spoken on a few occasions also as we were once on the same committee.

[Physalis in reply to BobD]

I think that if you say 'there is no cure' then you are shutting the door on their hope to ever get free of it.

[cuore in reply to BobD]

If I remember correctly, this "quality of life" thing expressed by Prof Schilling was stated a number of years ago. The treatment of AF as well as the outcome of the treatment as well as the attitude toward treatment has changed and is changing constantly. There are many top world EPs like Prof Schilling who do not subscribe to his "past quality of life" view ( his view is still current, I don't know). Thus perhaps, your could reference your quote as being Prof Schilling's, or even better quote another world class EP with an opposing viewpoint for a balanced position.

I choose not to follow your position that ablation is only for "quality of life or any treatment is for only quality of life." My position is that treatment is to prevent the heart from remodelling, specifically AF begets AF. #Physalis

[Karendeena in reply to Physalis]

My EP quoted an 80% cure at first ablation

[cuore in reply to Physalis]

Thank you for your position with which I agree "I know that it can come back but to dismiss it as only improving quality of life is not fair."

There really has not been a score for "quality of life " although there is a company that has some short questionnaire which is not free. Therefore, those that are more stoic, tolerant and conservative may eventually find themselves in permanent AF (not persistent ) whereas others, with same symptoms will immediately squeak and get their ablations. In my research, the focus is on heart remodelling which truly has impact on the heart not the quality of life the heart is having which is more a subjective interpretation. Those aiming to be "tough" may say their quality of life is good when their heart is remodelling like mad. You make a good point and I compliment you for it.

[Hidden]

A difficult question with a multilayered answer. The “AF burden” ( total time spent in AF) rather than the number of years with paroxysmal atrial fibrillation is a major determinant in the degree of left atrial enlargement and scarring, which in turn directly correlate with the success of ablation.

The expertise and good judgement of the electrophysiologist will influence the probability that ablation will reduce AF burden and that the degree of intervention if any, is appropriate.

[The_Lord_is_with_Us]

The longer you wait on or off medication ... the more the heart negatively 'remodels' structure wise. If you're not in AFIB too much, then there probably wouldn't be significant remodeling.

I'm in the USA. If you're diagnosed with AFIB ... you can fairly quickly see a good EP and get a quick ablation. However, if you have HMO medical insurance, the general practitioner gatekeeper might stall you for months since he's the only one who can approve an ablation. This happened to my brother, who also has AFIB.

I never had that kind of medical insurance. I could see any specialist I wanted without approval. For example, my AFIB came back in AUG 2020 after nearly 10 years of normalcy. I contacted one of the world's best EP's right away .... scheduled the procedure ... and had it performed on OCT 23rd. So far with great success. Maybe I'll get another 10 or 20 years.

Good Luck! with your treatment and I wish you the best . . .

[cuore in reply to The_Lord_is_with_Us]

Thank you for bringing out remodelling of the heart which is ,when it come to the bottom line, the more important factor and not just quality of life. Different people have different standards for quality of life, but the remodelling of the heart has a universal standard. Focusing on quality of life to the detriment of heart remodelling is a fast track to permanent AF.

[Hidden]

Hello Joanne

I think you sometimes have to push with the NHS as they can pursue the least costly option, maybe a private visit to a local cardiologist who undertakes ablations would help as they will sometimes put people on their NHS list. Trying to get to a BMI of 25 or less has a huge effect on AF as does quality of diet, sometimes that can reduce AF to a point where it can be managed without ablation but even if that's not the case will make an ablation far more likely to provide long term relief.

Andy

[JoBrien in reply to Hidden]

Thank you Andy, much appreciated and I shall push for a private consultation once the thyroid issue has been resolved. Waiting to hear from the guy today following his scan and bloods last week

[Ianc2]

I agree with Andy. Ask around for the name of the best EP in your area and ring his secretary directly to get a price and an appointment. It will probably cost you about £200.

[JoBrien in reply to Ianc2]

Thank you Lanc2. My husbands BMI isn’t high and feel that the consultant we have been under is just not getting anywhere. Another consultant over a year ago said my husbands situation had gone on long enough and suggested options but our consultant ignored and just said ‘see you again in 6 months’!! Don’t have faith in him anymore especially when it is alway the nurses that do the telephone consultations . My husband told them how his symptoms had changed and they ignored, hence then bam we had two admissions to hospital where finally they discovered his now added thyroid issue which now has been confirmed it was due to amiodarone.

I shall look into a private consultation and thank you for your help.

[cuore in reply to JoBrien]

How tragic when a consultant is so arrogant, full knowing Amiodarone can lead to thyroid issues or should know, to let your thyroid be destroyed. It is so unfortunate that such consultants cannot be held accountable. Definitely go to a private consultant and salvage the condition.

[Ducky2003]

Very similar to me. AF diagnosed 4.5 years ago and had 3 cardioversions. On Amiodarone but my thyroid was already shot from radioactive iodine treatment a few years ago. Has affected my corneas though but I'm very symptomatic without it. I was offered an ablation 3 years ago but had to say no at that point as I had been setting up a business. Was then to have it done 4 months later but after repeated chase ups, it was discovered that when my cardiologist/EP at the time had left, some of his records were not transferred to anyone else and some were missed off the waiting list, me being one. Had done well losing weight and getting healthier so current chap took me off Amiodarone to see if the heart would behave on it's own. It did fir 8 months, then boom. Waiting again but it was supposed to be expedited after a Christmas episode, possibly to Feb but with all the Covid admissions, I'm not sure that will happen. Good luck to your hubby.

[JoBrien in reply to Ducky2003]

Hi, thank you so much for your reply and sounds like you have been given the run around also. So frustrating. My husbands cardiologist always refers in any letters of late that ‘at time of ecg, he was in sinus rhythm’. Well eeerr yes he may have been at that particular moment but as you will know 5 mins later you won’t be!! I rang and basically demanded a new heart scan as feel he’s been totally let down. The scan which we know they have had results but never received them, at the time of scan was in AF.

I know from chatting to the nurses there is a new cardiologist with them now and when we can will ask to be moved to him.

Out of interest are you in Essex?

I’m wondering if anyone else from our area is having issues with the same consultant DR Tan?

[Ducky2003 in reply to JoBrien]

No, I'm in Coventry. The guy I'm under now is very helpful and I can go direct to him and bypass my GP. The Amiodarone is not ideal but make sure hubby has his liver function checked regularly and his eyes. I've had chest x-rays too to be on the safe side. This started for me in my 40s so it's not been a great few years but I always try and think that there's always someone else worse off. 😊

[JoBrien in reply to Ducky2003]

Thank you, yes he’s had bloods tested when we have reminded the GP . Can’t get to see or talk to them at the moment anyway so thank goodness the endocrinologist is on the ball to help . X

[cuore in reply to JoBrien]

I would suggest you get a Kardia or some other ECG machine , and then you could email the ECG showing arrhythmia to your cardiologist to wake him up rather than dismiss your husband's condition. I get the feeling that so many cardiologists are not interested in AF.

[JoBrien in reply to cuore]

Thank you, that is a very good suggestion.

[Bambi65]

A hospital "quack" put my mother on that same drug 3 years ago because she had 1, ONE SINGLE episode of AFIB. It took me almost a year to finally convince her to get off that crap. to stop taking it immediately. After 11 months she cold turkey stopped taking it. I finally got her to see an EP at Duke Medical. They put her in the hospital. Thyroid damage along with other organ began to show signs of failure. This was a healthy woman prior to all of this. The doctors at Duke told her that she probably would not have made it another 6 months if she had continued to take amiodarone. It was the worst medicine. Read about the side effects or any and all meds taken. Be your own advocate, they are not Gods. Talk with your docs, if they are not listening to your concerns, go somewhere else.

[JoBrien in reply to Bambi65]

Oh your poor mum 😢Our GP in the years he’s been on it have been no help and we had to remind them about blood tests for goodness sake.

Had a call from the Endocrinologist today following hubbies recent scan and he again confirmed that this drug has caused the damage to thyroid and vocal cords but hopefully with the steroids etc he’s on now it will repair. Just have to wait and see. When I wrote to his heart consultant to say what’s been going on, his reply was ‘oh yes it can cause that’. I’m just so cross at the lack of personal care and response.

We will definitely be asking to see someone else when things settle.

I wish you mum well xx

[Bambi65 in reply to JoBrien]

Just so you know, it took over a year for her thyroid to get back into a semi normal range. She is better. That drug should be taken off the market with so many other safer options.

[cuore in reply to Bambi65]

Always very well said, Bambi65. It's already hard having a condition without having a so-called professional mess it up. The incompetence of my now retired GP in not referring me timely and to the right person has placed me on high alert to not repeat the mistake of trust. A medical professional now has to earn my trust, or I will be most dismissive of him/her.

[Karendeena]

Hi JoBrien, I was only diagnosed with Paroxysmal AF in July last year, with two visits to A &E where I was kept in overnight whilst they got me back into NSR. I saw 2 different Cardiologists (Cardiologist of the week I was told!) and they both advised differently. As this didn't give me much confidence in them I made a private appointment to see a top EP. I found this much more informative and he changed my medication. He asked me to go back to him in 3 months, which is booked for 8th February and we are going to discuss ablation. He is happy to put me on his NHS waiting list and quoted me 80% chance of cure at first go. This will reduce to 60% if the condition progresses to be persistant. I am told that early intervention is the best option, so I wouldn't say there is a time limit, in fact it looks like the earlier it's done the better