Hello all I suffer from permanent af and discussed the possibility of having an ablation with the heart specialist and he said that ablation does not work on people with permanent af. Can anyone explain why this would be?
Thanks in advance.
Ablation procedure : Hello all I suffer... - Atrial Fibrillati...
Ablation procedure
55 Replies
•
Whilst we know that ablation treatment for permanent AF is difficult, hence the term permanent, I believe there have been cases where with multiple attempts and a very skilful EP, there has been some success. Firstly, you need to be sure that it is permanent AF and this normally requires one or more CV’s and often this is carried out in conjunction with a very potent, but successful rhythm drug such as Amiodarone for around 3 to 6 months before and after the procedure.
Some EP’s may be reluctant to try because the failure rate unfortunately is high and this will have an adverse impact on their success ratings. Hopefully others here may be able to advise and offer suggestions as to where you might find an EP who would rise to the challenge but it is important to go down the CV route first just to be sure that your AF is permanent.......good luck
Hi Permanent AF is just a term used to denote when patient and doctor have agreed no more treatment can be done. If you have had AF for a long time, your doctor will assess whether ablation is likely to work. We had a good talk from Julian Jarman (Royal Brompton) and he discussed how they assess likelihood of success so you should perhaps seek a second opinion to discuss your case in detail I found one article in which Jarman is a co author- not sure if it's the latest research but copy part of it here.
Multivariate analysis
showed 6 independent variables predicting freedom from AF after
final ablation: coronary artery disease (P ¼ .021), atrial diameter
(P ¼ .0003), age (P ¼ .004), persistent or long-standing AF (P o
.0001), number of antiarrhythmic drugs failed (P o .0001), and
female sex (P ¼ .0001). We created a scoring system (CAAP-AF)
using these 6 variables, with scores ranging from 0 to 13 points.
The 2-year AF-free rates by CAAP-AF scores were as follows: 0 ¼
100%, 1 ¼ 95.7%, 2 ¼ 96.3%, 3 ¼ 83.1%, 4 ¼ 85.5%, 5 ¼ 79.9%,
6 ¼ 76.1%, 7 ¼ 63.4%, 8 ¼ 51.1%, 9 ¼ 53.6%, and ≥10 ¼ 29.1%.
Ablation success decreased as CAAP-AF scores increased (P o
.0001). The CAAP-AF score also predicted freedom from AF in the
TC. The 2-year Kaplan-Meier AF-free rates by CAAP-AF scores were as
follows: 0 ¼ 100%, 1 ¼ 87.0%, 2 ¼ 89.0%, 3 ¼ 91.6%, 4 ¼ 90.5%,
5 ¼ 84.4%, 6 ¼ 70.1%, 7 ¼ 71.0%, 8 ¼ 60.7%, 9 ¼ 68.9%, and
≥10 ¼ 51.3%. As CAAP-AF scores increased, 2-year freedom from
AF in the TC decreased (P o .0001).
CO
appreciate it looks complicated which is why second, experienced opinion might be wise.
• in reply torosyG
Hello Rosy I’d likely to point out that I haven’t agreed with the specialist that there is no more that we can do to relieve my af. I live in a small town and have asked to see more specialized professionals in a larger city. He told me to think on it for awhile and see how I’m feeling. I don’t enjoy running out of energy and shallow breathing as I’m normally a very active person. I think the specialist thinks because I’m 64 years of age that I’m ok with not being active as I usually am. This is why I would like to talk to another professional that is more trained in this field.
rosyG• in reply to
I understood that you are interested in doing more- so you aren’t permanent but persistent possibly ??!!
• in reply torosyG
All I know for sure according to the professionals is that I’m in afib 24 hours a day. The specialist I see here tells me it’s permanent. As I referred to earlier.
• in reply to
WebMD explains that doctors will actually classify someone’s AFib by how long their symptoms last. For example, paroxysmal fibrillation is used to describe symptoms that last 7-days or less, persistent AFib lasts for longer than 7-days, and permanent AFib doesn’t go away. Many people who suffer from the same condition will have a different experience and it typically “depends on their age, the cause of AFib (such as heart problems or other diseases), and how much AFib affects the pumping of the heart,” writes the Heart Rhythm Society..
rosyG• in reply to
If you look more widely you’ll find that you’d be classified as long standing persistent af if you haven’t accepted that there should be no attempts to regain NSR. So your specialist is using permanent incorrectly if you haven’t Agreed !!
• in reply torosyG
Are you a medical professional or a patient with afib?
rosyG• in reply to
I have AF and am a qualified nurse but my AF information is from consultants who talk to the af support group which I co founded in Surrey. We’ve been very lucky to have had monthly lectures for several years.
• in reply torosyG
O that’s very good. I’m asking the specialist here in Prince George to please refer me to St. Paul’s hospital in Vancouver as they have a afib support group and specialize in cardiactrics.
rosyG• in reply to
Yes you do need a referral as 64 is far too young to just accept the status quo!!
I agree Rosy! I’m 64 too and have been in AFib 24/7 since 18th September (except for three days after my cardioversion).
Hope you get sorted out soon
Niki_• in reply to
Have you tried any natural supplants? Such as taurine and L-arginine? Magnesium ? Many have had a lot of good luck using these supplements.
• in reply toNiki_
Yes I was taking magnesium but then I was told it could be effecting my INR as it started fluctuating quite a bit so I stopped taking it. I can look into the taurine and larginine. Thanks for the suggestion Niki. 😊
purpleswimmer• in reply to
Hi again. I was also very active. Swimming, walking and pilates, aquafit but have had to accept it won't be happening. The lockdown has stopped most of these anyway but I am building up my walking, can now do about 2-2.5k a day! It has taken me a year, first diagnosed, to even begin to come to terms with these changes and yes most professionals think because I am 67yrs that I would be slowing down anyway. Not true. It is so very hard. Xx
• in reply topurpleswimmer
Yes I know how you feel. I’m fortunate that I live where we have winter and cold weather so I like to put on my snowshoes and go out to a lake ice fishing. 3 years ago before I was diagnosed with afib I could hike and pull all my gear for miles and Saturday I went out and every 5 minutes I had to stop and catch my breath and let my heart settle down. I’m not even sure if I should be doing that. Same for hunting and hiking in the woods. 😞
This monogram from 2006 may answer your question. Lab time, number of attempts necessary and patient suitably are presumably factors taken into consideration.New techniques and increasing expertise since this publication, would suggest that ablation for what is currently considered permanent AFib , may in time be safe enough to become mainstream.
Try googling for recent papers.
A lot of older permanent AFibbers seem to adapt well. Weight loss and modest exercise may improve exercise tolerance.
ncbi.nlm.nih.gov/pmc/articl...
• in reply to
Thank you Badger I will ask my Specialist to refer me to the hospital where they are more experienced in this field.
Been some great advice and support for you on here as usual. Best of luck and never stop trying elkhunter as it’s your life not the specialists 🙏👍
• in reply tothejepo
Thank you Jepo, yes and thanks to all who left comments and suggestions. I appreciate them all.
I went into afib when I was about your age. I had 4 cardioversions (obviously the first 3 didn't last long despite meds) ... I think you call that permanent a-fib. I had an ablation which worked for about 18 months, and my EP gave me a second ablation at the end of 2019 (he said he laid extra tracks around every possible source of a-fib while he was in there) and so far so good.
You cannot know whether an ablation will work until its done on you. I recommend getting a second opinion (and however many more you need until you find someone who will ablate you). Especially at your age.
Vast difference between those who claim to be competent EP's ... and the real superstar EP's.
My recent ablation was performed by Dr. Andrea Natale ... one of the pioneers of the procedure. He does what other EP's told patients couldn't be done. He ablates the Left Atrial Appendage area where only a few EP's in the world dare to tred.
I don't believe he throws in the towel on permanent AFIB. He probably accepts the challenge regularly with great success.
My recommendation has always been to seek the best EP you can find. Fly there ... if you have to. Dr. Natale heads up a cardiac arrhythmia group in Austin, Texas. And once a month, he travels to Los Angeles and performs about 9 or so ablations ... and other similar procedures.
Hi ElkhunterThat is not so must be other reasons
I’m a fit 80 yrs started about 20 years ago
Drank ice cold lager after team squash and
Had Palpitations bad . Over next 19 years
or so Palpitations would come and go but
did feel bad at times.
I used to take is easy for a few hours till they went sometimes about 8 hours.
March 2019 got of a Transatlantic Cruise
at Southampton and it started but it turned
Into AFP that is Permanent AF.
Went on to 10mm Bisoprolol and 10 mm
of Ramipril for about a year ?
I then had consultation with a Doctor at
Lister who carried out Cardio Version
That worked but only last a few Hours
and I jumped back to AF.
Then I had consultation with Dr Karmeadies at Royal Brompton Hospital
He carried out Cardio Ablation 4 Hours
on Table about 10 Staff that was
November 2020 well it worked back in
Sinus Rhythm but lasted only 16 Days
Jumped back to AFP.
He then arranged Cardio Version on
18th January 2021 this has worked.
I then got back to Sinus Mode.
And yesterday 1st February I had an
ECG at my Letchworth Doctors
Surgery and good News still in Sinus
Print out confirms .
Normal ECG Sinus Rhythm.
So it is a combination of both procedures.
This also is the case of my old Tennis
Partner Bryan he went5 years and about
5 Procedures and finished same
Route had Ablation and then Version
He is Fine now.
I found it strange that in AFP I never had any symptoms.
All ways required an ECG to confirm.
Hope my History is Helpfull I also
Walked 2 miles not stop yesterday
over the Gold Course with Dog.
My Wife is pleased that Golf is a No Go.
Great for Dog Walks
Regards
John
Seventy 9 ( Code )
• in reply toSeventy9
Hi John I’m not sure what you are saying. You say ( not so must be other reasons). Reasons for what are you referring too?
Seventy9• in reply to
Hi Ellie 1 am Here Wednesday Think I recall a person saying it doesn’t
Work . I’m saying it does work
.I believe there are some cases of Heart
Mussel problems or Valves can still produce palpitations.
But AF is electrical.
Not a Doctor.
John
Like you, I am a fellow British Columbian except I live in the lower mainland. Like you, I was treated by my GP who let me get to persistent by inadequately treating me and only then he finally referred me. I will stop the story here, but you can pm me for the rest, and I can even give you my phone number should you wish to know the ropes of the system in B.C. Make sure you go only to St. Pauls.
You are too young to listen to your GP especially since he is following old guidelines or you would not have reached this advanced AF stage. Time is of the essence for you, so tell your GP you want to be immediately referred directly to an EP, otherwise you will spend time getting to a cardiologist, who might just keep you rather than referring you to an EP. That's what happened to two friends of mine in our system here that gives little if any priority to non-life threatening AF. One friend was told by her cardiologist that it was too early to be referred to an EP despite being persistent; figure that one. Plus, you will waste so much time first being referred to one then another. You are going to have to fend for yourself because our system is not progressive here.
Your GP probably won't know which EP to refer you so have a name handy. Also look at your history and try to find out the date that your constant AF started. You have a long road to get to sinus. I did, but not due to B.C., but Bordeaux, France. Our B.C. health system did not pay for my three ablations; I did. A friend of mine, also in the lower mainland went to Bordeaux, France and is now in sinus.
I drove through Prince George during the winter years ago. I remember the pot holes and the cold. I also almost worked there had I not already accepted employment from Likely.
I was under a cardiologist since I was diagnosed last year. Not happy that I wasn't getting the best treatment and advice I asked to be referred to a top EP Professor and I now feel I am in very safe hands. Had to pay but worth every penny. I am in the UK by the way
• in reply toKarendeena
Thank you for your reply.
You echo my sentiments. I do not regret one penny that I spent on the three ablations to get me back to sinus. My regret is that I did not search for top EP help when paroxysmal, but what did I know? So many of us when first diagnosed do not get the proper treatment which is really so sad. So many of us are confined to a long, arduous journey when the whole trip could have been a short, bright one with stunning results. Those who are led to persistent are left to pick up the pieces with collateral damage.
What a smart move you made. Your road will be shorter and better, granted we are on this journey for life. Wishing you the best.
Thank you coure, I will update you when I see him again next Monday
Good luck Elli ManI also think reading various History reports
Like can’t be done !!
Maybe it’s the Heart and not the Electric
Part that is the Problem?
I’m not a Doctor ( used to sell Glazing )
But you need to sort out that it is like
Electric Frequency that is the Cause?
That’s why I believe some can have Cardio Ablation and some can’t my Dr spent 4 Hours burning unwanted waves ..
Hi Elk. Can I ask how long you’ve been in AFib?
• in reply toSlidingdoors99
Yes I was diagnosed in June of 2017.
Slidingdoors99• in reply to
I can see that you’re getting lots of replies to your question (which is so good) This forum is so great for so many of us.I’m not a doctor either (I’m a primary school teacher!) but really I don’t see why you can’t have an ablation.
I hope you can see someone with more expertise and that they’ll put you on the right path.
• in reply toSlidingdoors99
Thank you and yes I’m looking into getting a referral to see a EP in another city as we don’t have one here where I live. Everything takes time but hopefully it will work out.😊
Good morning elkhunter, I developed AFib after dislocating my hip whilst walking the dog on the beach. Took 45 mins to get me into the ambulance.
I was able to book into see a Consultant who after checking me over stated he would refer me to see an Electrial Cardiologist, one who specialises in the electrical aspects of the heart. He said he was the Plumer and I needed an Electrician.
I have had a cardioversion and two ablations, the second ablation was 15 weeks ago and I am in sinus rhythm. However, I do still have random missed heart beats which I am told quite usual.
I am 75 and will be 76 in March. I like to think I am fairly active and play golf 3 times per week weather permitting.
If I were you I would ask to see an electro cardiologist as they are the ones who are best suited to the ablation process and to give you the best advice, not the GP who are very general.
Best of luck
Dave J
• in reply toGolfer60UK
Thanks Dave and can I ask you how your energy was when you were in af?
Golfer60UK• in reply to
Well to be honest it was pretty poor, I think also caused by Bisoprolol 5mg then down to 2.5mg. Finally stopped and feel much improved
• in reply toGolfer60UK
Thank you
I have had the sinus node ablation for permanent AF on the advice of my cardiologist who explained that while it does not stop the ablation it prevents it activating ventricular tachycardia. (Much more dangerous condition) I was a brady-tachy patient. Check that with your cardio.
Good luck , you need to find a skilled EP , I was lucky, I’ve been seeing same one for years, mine got to the stage where he told me last year, at 67 , that I needed an ablation ....... I was lucky, my guy is one the top of EPs at Royal Brompton, London , so I was well looked after . I’m finally off Flecainide , but forever on Rivaroxaban. Keep asking for a better referral, 64 is too young to be weighed down by AF !
• in reply toAlessa69
Thank you Alessa😊
Hi. I cannot answer why but as another with permanent a fib I have been told the same. I was told no point putting myself through it as it would not work. Consultant said it might be gone for a few days but more likely a few hours. Currently mine is controlled with medication but it comes with side effects. I also have heart failure so have to take things easy. Xx
• in reply topurpleswimmer
Yes I’m on medication and don’t like side affects. I’m taking 50 mg of metoprolol twice daily and it makes me feel very lethargic. Thank you for your comment.😊
Hi, I was diagnosed with AF in 2016 and had a cardioversion in 2017 but only stayed in SR for a few weeks. This was followed by a cryoablation in 2018 and RF ablation in 2019. Neither of these kept me in SR for long. I was described as being in permanent AF but compared to what some people have to go through I had a reasonably low heart rate and was able to stay pretty active (although breathless at times). I was never prescribed drugs or felt I needed them. In July 2020 I had another RF ablation. 6 months on I feel so fortunate to still be in SR and have felt gradually better as the months have passed. I’m 65 (nearly 66). I was very lucky to have a consultant who was confident that they could help me. Fingers crossed it lasts! Based on my experience I would definitely get a second opinion.
• in reply toJohnboy64
Thanks so much Johnboy. I appreciate your input.
Hi,A member on here flew from Canada to Bordeaux in France 3 times for 3 ablations and the third one worked. They pioneered the procedure and are renowned for successfully treating complicated Afib. That's determination !! I'm afraid I'm unable to remember her forum name but if she is reading this perhaps she can answer your questions?
Take care
• in reply toLilypocket
Yes thank you. And she is a he and I did hear from him. I left him my number so I hope he calls.
Lilypocket• in reply to
Thanks for the correction 🙂. I can't always tell with forum names but his story gives hope to many. I live in France so if ever my condition gets complicated I know where I'm heading to!
There may be an issue relating to terminology here. I have had A Fib for many years.Initially it was Paroxysmal but then became Persistent. I have got to the point where, after 4 Cardioversions, 2 ablations and various meds, which are either ineffective or make me feel 'strange' I have run out of options apart, that is, from being fitted with Cardio Resynchronisation Therapy pacemaker. If that doesn't work and my Quality of Life doesn't improve then, I guess, I will be in Permanent A Fib for the duration - however long that is!
Not what you're looking for?
You may also like...
Ablation procedure
Hi was just wondering has anybody had the procedure Ablation and had it abandoned because of a...
Ablation
I know this question is basic and may make me look stupid but what is a Ablation and does it "cure"...
Chances of progression after ablation?
Hi All:
i was just curious, and I know everyone is different, what are the odds of AF progressing...
can you have an ablation while in AF?
I’ve been told by an acquaintance that you can’t have an ablation if you are in permanent AF with...
Ablation damage
Hi, Would anyone know, if there is a possibility of permanent heart muscle damage during a cardiac...
Procedure after ablation
Ablation or not ?
Av node ablation nearly 2 yrs on
af episode following ablation
When is AV Node ablation the answer?
