Ablation question

[djroute66]

I have now been put on flecainide twice a day after having one af attack every month the specailist said that I could be concider for an ablation in 6months but then went in to describing the process . Saying that there are four valves ? Coming out of the upper chamber of the heart which they will burn around all of them?? Is this right as I thought they would only burn where the fault was . Getting very nervous

[BobD Volunteer]

If you go to AF Association website there is a great booklet to download on ablation. In brief there are four VEINS call pulmonary veins which bring blood back into the heart from the lungs. These go into the left atrium. The rogue signals which cause AF are thought to originate within the entrances to these four PVs and they are isolated by forming a ring of scar tissue across which electrical impulses can't travel.This can be done either with heat or freezing dependent on the preference of the EP who performs the procedure.

From a patients point of view the procedure is easy and whilst there are risks these are very rare.

Read up and I am sure you will understand and be far less worried.

[djroute66 in reply to BobD]

Cheers Bob! will certainly read up on it. This is the first time ablation as been mentioned it all seems too real at the moment but I'm sure I will be more at ease as time goes by

[Andyu80 in reply to BobD]

There can be more or less PVs. Aparantly it is quite common not to have 4. I have 5, 4 of which needed ablating, and the 5th was left alone.

[Rellim296 in reply to Andyu80]

About 25% of us have only 3, usually 2 on the right and 1 on the left.

[CDreamer in reply to Rellim296]

I have 3, 2 normal size ones and 1 huge one - according to EP - he is the only one who has actually seen them!

[djroute66 in reply to CDreamer]

Wow sounds like something out of the film alien ha . Which I suppose only goes to confirm that we are all different hence treatments will differ too thank you for replying

[Hidden]

You don't say what dose of Flecainide. I started on x2 50mg per day which didn't stop it but x2 100mg per day did and I have been AF free for 26 months......but as well as the drug I have also avoided all known trigger points, taken supplements (e.g. Mg & CoQ10) and worked on a host of lifestyle issues all discussed here from time to time.

Good luck, you will have to make changes but they are not all bad, in fact some are very good!

[djroute66 in reply to Hidden]

Glad to hear that you have your af under control. I am on 50mg twice a day but it' will take some time to see if it is working as I only have 1 attack a month which last just a few hours. I also suffer from anxiety grr so I can't say why I am feeling light headed and lethargic since taking the drug daily ? I also take mg & Coq10 plus Vit c and B12. Have you had an ablation or are you more at ease taking the flec ? I was wondering how long some have been on this drug and the effects over time .thank you for your reply

[Hidden in reply to djroute66]

I am postponing an ablation. I am also wary of being on Flecainide for too long and hope to start reducing the dose in August after 27 months on it with no side effects. Your priority must be to loose those monthly episodes and work on the anxiety - I did this by employing a number of activities, new hobby, Mindfulness, Qigong, prayer and Nature walks.

[djroute66 in reply to Hidden]

Thank you orchard worker I know you are right I should have done something along time ago about the anxiety. If you don't mind me asking why you have postponed your ablation ?

[Hidden in reply to djroute66]

Success rate quoted by my EP was too low for me at 70% plus I have Lone PAF and therefore I thought there was a chance I could do better with drugs, supplements and changes. So far so good and even if I have to have an ablation later, I take comfort in believing that procedures will have improved over the postponed period.

[PeterWh in reply to Hidden]

Not saying it's wrong nor pushing had to make you change but how long ago were you quoted 70% because that is the figure used for those in persistent AF (as I am) and for lone PAF it is much higher. Look at the AFA patients day slides and also AFA publications. Some EPs are reckoning on higher still.

Lifestyle and diet changes are the best for sure but AF can still progress when on flecainide it is just the flecainide stops the display so to speak.

[Hidden in reply to PeterWh]

Saw the EP 2 years ago Peter. He quoted 70% I believe because I had some AF history, starting back in 2008. I dare say now if I revisited it might have risen to 80%.

For me, I would be much more comfortable about having an ablation now if it comes back when I reduce the Flecainide as I know I have done pretty much everything I can do with supplements and lifestyle.

[PeterWh in reply to Hidden]

See Relim's response a bit below.

Good way forward.

[djroute66 in reply to PeterWh]

I don't want to sound like the party spoiler but I only have 1 attack a month which lasts no more than 2-3 hours and that not every month, I saw the EP last week and he told me that it's a 70% susscess rate . Should I be thinking about changing my EP specailist or is he right

[Rellim296 in reply to djroute66]

I don't want to rain on your parade either, dj, but give it time and your AF might well not be once a month but be happening more frequently. That certainly happened to me, and by the time my ablation dates came round, I was in no doubt that I didn't want it to continue progressing as it had been doing.

I was also offered a 70% chance of success. It sounded pretty good to me. I would have been more hesitant if it had been, say, 40%. But what is success? I have had three ablations now and I still, occasionally, get AF so it's not been a complete success. However, I was able to give up flecainide after the second ablation and I consider that a major step forward. I feel I am in a much better situation than I would have been if I had not gone ahead. As I've said I just regret letting things slide while I was on flecainde and wish I had not taken so much of it for so long. Had I had a second ablation sooner my AF might have been more successfully dealt with.

[djroute66 in reply to Rellim296]

Thank you rell . To be honest with you I already set my mind on going for the ablation purely on the facts as you have stated af only get worse over time and I don't want to go through that. I am concern about being awake while it's being done. But let's hope

[Rellim296 in reply to djroute66]

I had sedation each time and was not aware - or have no memories - of any of it. I just surfaced later on the ward.

[PeterWh in reply to djroute66]

You will be partially aware of things for some of the time but for the rest of the time you will be out with the fairies. My disappointment was that I was not awake for most of the time so that I could see what was going on.

[djroute66 in reply to PeterWh]

Hi peter

You are more than welcome to sit in on my ablation ha.As for me it's eyes closed and fingers crossed all the way.

[PeterWh in reply to djroute66]

LOL!!! That would shock you and them!!!

[PeterWh in reply to djroute66]

Well depends on how up to date he is on statistics, as they have bettered in the last 5 years!!!

I don't have my notes handy but I think that the figure was 70% to 80% FIRST time if in paroxysmal but only 30% if have persistent. A second procedure is therefore common for those with persistent.

In my case I was in persistent AF and before I mad my decision I asked my EP to be honest and open with me as to what the chances of success were in MY (yes specifically my) case and he said no chance but he would bring forward 3 months review to 6 weeks in the hopes that I was still in NSR then (went back into AF in just under 72 hours). He said it would take 2 and quite possibly 3 attempts.

I obviously still went ahead with No 1 and am waiting for No 2 (delayed by heart valve issues).

[CDreamer]

I was on Flec for approx 6 years - 5 as PIP & pre & post ablation for about 1 year. Flec lost its effectiveness on a daily dose - I took 150mg X 2 day. It is also known to be a toxic drug so important to have blood test every 3-6 months to check kidney & liver functions.

I had no noticeable side effects from Flec, just hated putting toxic substance into my body. I have developed another condition which Flec and Bisoprolol are known to exacerbate. Hope this helps.

[djroute66 in reply to CDreamer]

I also hate putting toxic drugs into my body . As I have lived a reasonably healthy life. Last week I was in the Forest of Dean hiking biking and canoeing . Af is so frustrating doctors keep telling me I have a healthy heart other than the electrics. And I am so concern that these drugs will start to effect my health . I believe that there is a mental link which needs to be explored .I am reading a book called mind over medicine writing by a doctor called Lissa rankin. Which seems to highlight my thinking.drugs that cure is fine but drugs that just hold things at bay are not good in my mind. But unfortunately drug companies invest a lot more in retaining drugs rather than curing drugs . Let's be blunt there's no money it it for them to cure. I believe in a natural approach I'm am booked for CBT therapy to try and get my thinking right . I am also doing yoga . I am also very spiritual which I know is not everyone's cup of tea . But I draw strength from it which I believe we all need thanks again CDreamer

[CDreamer in reply to djroute66]

If you look back over my posts over the last 3 years you will I went that route for the same reason you express. Unfortunately my AF was progressive and my QOL deteriated, very gradually so I suddenly woke up one day and realised just HOW much it had declined. I also had an otherwise healthy heart. I tried most things - I am a qualified Gestalt psychotherapist, supervisor and trainer and I also investigated the mind/body connection - for sure there AF is worse when you worry and CBT will help manage the 'worry' thoughts - but in the end the only treatments are - drugs or ablation.

I had 2 ablations and now no more AF and no more Flec etc, unfortunately the drugs exacerbated an underlying condition which now means I have a variable QOL but no more AF!

Suggest you catch the post on Eptopics posted by Steve - Sanjaj Gupta video. Go onto YouTube - he has posted a lot of videos on AF all very informative. In particular research Vagas Nerve & AF and research Vagal Tone and try exercises which help improve Vagal Tone.

AF is NOT caused by any psychological condition - it is totally physical but taking a holistic approach is very important in my opinion.

[Hidden in reply to djroute66]

Totally agree on drugs but what I have learned is a) the drug was essential to eradicate quickly the problem as even some AF begets more AF and it then buys you time to make other changes b) AF can be triggered by the mind via the Vagal Nerve and CDreamer makes some very good contributions on improving Vagal Tone. Over the last 2+ years, I have been completely AF free apart from two very brief episodes both lasting just a few minutes and both caused by the mind - I know this because in both cases I revisited places where I had previously (before being on Flec daily) had bad episodes. I therefore am doing regular breathing exercises to improve Vagal Tone and de-stressing generally.

[PeterWh in reply to Hidden]

Thee key would be to have a discussion with your EP or cardiologist and see what happens if you reduced the flecainide, possibly for a short period. Whilst it is true that AF begets AF thee progression of AF is not necessarily stopped by taking flecainide

[CDreamer in reply to Hidden]

Certainly if you revisit unpleasant experiences, even just by thinking about those experiences, you will re-create the emotions and trauma you originally experienced - this in turn will affect the vagus nerve and if you are that way inclined, this could trigger AF.

The 'mind' does not trigger AF but the process initiated by the mind could - so I hold that AF is not 'caused' by the mind. There has to be a underlying pre-disposition, otherwise everyone on the planet would have AF.

I hope this explanations helps clarify my meaning.

[CDreamer]

PS - supplements do also help as does regular relaxation techniques such as yoga - I had to stop yoga as I couldn't hold the poses - too much for me because I have extreme muscle weakness. Also check out HeartMath - they are the only organisation I know of that claim succes through trials of stopping or reducing AF without drugs. They also have a gadget to connect to smart phone which helps with breathing exercises which improve Vagal tone - excellent research based in California and NOT funded by big pharma. I also understand that Hyperbaric oxygen treatment helps arrythmias. If you want more info PM me.

[Hidden in reply to CDreamer]

Thanks CDreamer

[CDreamer]

Cardiologist split heart health into 1 a infrastructure - valves, muscle etc. 2 circulatory - arteries, veins and their blockages etc 3 electrics.

Great knowing you don't have any othe underlying conditions!

[djroute66]

Will certainly check out your other posts as it seems we are of equal thinking on most things and I will valve your research and experience

[yanbart]

Hi, just thought I would leave my 2 pennies' worth! I have been on flecainide 2x50mg daily for almost a year now. I was diagnosed with PAF which was worsening quite quickly. Aside from odd ectopic beats I have been AF free since starting the drug. I too have postponed having an ablation as I would rather see how I get on with the drugs (for now at least). I do have a review with my cardiologist next month, so we will see how things are then I guess! Yan

[Rellim296]

Flecainide worked really well for me but I regret taking a high dose of it for so long and wish I had gone down the ablation route sooner than I did.

Yes, techniques will always be improving but they have progressed already with innovations like laser balloon ablation. These actually don't work that well if you have only one pulmonary vein on one side as the vein tends to be larger, as CDreamer says. Thus the balloon will not inflate the vein as efficiently for neat continuous treatment. A touch-up ablation using a 3D computer image of the heart may be necessary to fill in any gaps.