Ablation for PAF recently diagnosed - Atrial Fibrillati...

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Ablation for PAF recently diagnosed

Nenar profile image
23 Replies

Hi everyone, I have PAF and had one episode of AF - ended up in A&E where I was diagnosed. I’ve had the off heart flutter for the last 10 years but this is the first time my heart was racing and it was racing for approx 3 days. Since then I only had one episode that lasted 3 hours and another than lasted 10 minutes but no racing again. Still get the off flutter which actually happens a little more More with sleep apnea the odd evening. I’m a 43 female, and generally health is ok apart allergies and also breathing issues which I’m getting investigated, but likely to be asthma. Also suffer from reoccurring bronchitis. So from the PAX perspective it doesn’t seem like a biggie right now, except when I feel a little ofd rarely and feel my pulse and it’s erraric but then settles it’s aelf within minutes. By consultant want to do an ablation as he has asdvised that it will get worse and I’m likely to end up in permanent AF. He’s advised I’m a good candidate right now as and success rates are high for PAF before it becomes worse. It seems odd to get this procedure done when I haven’t had the racing heart again and I seem pretty normal. What are your thoughts, anyone in the same boat as it seems that my problem is flutters more than anything and are the flutters anything to be concerned about enough to get the ablation down? Sorry for the long message, and thank you for your advise!

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Nenar profile image
Nenar
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23 Replies
pottypete1 profile image
pottypete1

We are all different so it is difficult to generalise.

My view is that ablations are costly in terms of time for a big team of doctors and radiology technicians and you would not be offered an ablation unless your EP felt it to be the best option for you.

Statistically 80% + ablations are successful for first time procedures and the technology is improving all the time.

Pete

Nenar profile image
Nenar in reply to pottypete1

Thanks Pete,

just one thing that is playing on my mind about this. After the incident at A&E, I was asked to come back to the hospital 2 days later to be put on a hear monitor again. But my heart had returned to normal, as I'd been given a Beta Blocker. I told them I've recognised the heart flutters have been happening for approx 10 years. They told me as my heart was back to normal again, nothing to worry about or do as it may have been a one-off so they didn't feel it necessary to do anything. I then went to see a consultant with my medical insurance. He put me on a 24 hour hear monitor and did other tests to check the structure of my heart - all came out fine. He looked at my report from the A&E which confirmed AF, and told me I had PAF as it has been confirmed by the hospital. His advise was contrary to the NHS and has advised that I should get ablation now as I am in the very early stages. He is a very credible consultant (works in Barts) and an expert in this field. Should I listen to the NHS - wondering why they didn't seem too concerned and sent me home, and yet the consultant is keen to do the procedure. IF both NHS and the consultant were advising on getting the procedure done, then maybe I wouldn't be too concerned. Or maybe this is a case of NHS just prioritising more advanced cases than mine, and the private consultant taking a preventative approach - this is so confusing!

Many thanks

Nena

pottypete1 profile image
pottypete1 in reply to Nenar

This is the dilemma.

I was not aware you had gone private for your advice. It is fair comment to question why A&E did not refer you to an EP on the NHS. You may wish to monitor things for a little while.

I would research your EP Consultant and if he is as experienced as you suspect then his opinion is significant.

If you are at all unsure you should make another appointment or phone his secretary and express your concerns. Whilst ablation is a very safe procedure it is a bit of an ordeal.

Pete

Nenar profile image
Nenar in reply to pottypete1

Thank you Pete - lol my consultant said I can go back to work within 2 days. Oh my, I'm not sure I can handle an ordeal, as I feel perfectly fine. He did say I can wait, but likelihood is that I will need it at some time so better to do it now whilst I do not have two many episodes as something to do with not too many new paths have been created? Anyway, thank you once again, i'll research more and definitely go back for another appointment! Nena

jeanjeannie50 profile image
jeanjeannie50

Hi Nenar - All I can say is my sister had a few bouts of AF (each attack never more than an hour) and after a few years they just disappeared. Me, I've had 3 ablations and to be honest they helped slightly but weren't successful. The tablets Flecainide have helped control it more.

A lot of forum members have found that a healthier plant based diet, involving cutting out certain foods (e.g. gluten and lactose) and artificial additives can often really help. With hindsight I would try that first before considering an ablation.

Just my opinion.

Jean

Nenar profile image
Nenar in reply to jeanjeannie50

Hi Jean,

thank you for coming back to me.

I have been a Vegan for 15 years, and also haven't been eating lots of food due to allergies for approximate 3 years including Gluten, yeast, chilli's, olive oils etc. Most people say I have one of the cleanest diets ever and I d not not drink Coffee or tea also! I keep my diet simple with lots of veggies and not processed foods.

My attack than landed me in hospital lasted 3 days, and I though I was having acid reflux (never had this before) until my husband and niece convinced me to call HNS direct (I hate wasting peoples time but they kept nagging me!) so I called NHS direct and after a few questions, they sent the ambulance. I honestly thought this is what heartburn must feel like, however was told my heart was irregular and also approx 135.

I know the heart flutters have been there for years as I can feel them every now and again. I am wondering is it PAX if its not fast, but irregular? I do feel my pulse sometimes and I can feel it jumping around sometimes going from a strong beat to a very faint one - but it's not fast when doing this. And then back to normal again.

Sorry for lots of questions, it been a month since diagnoses so all very new to me!

Thank you for your response once again

Nena

jeanjeannie50 profile image
jeanjeannie50 in reply to Nenar

Hi Nenar, it sounds as though you've been doing all the right things. Some of the things my AF will react to are artificial sweeteners and also some fillers, Maltodextrin and E123 being some of them.

A fast even beat is atrial flutter and an irregular beat - no matter what speed AF. I have had both. Have you ever worn a heart monitor for a week, just to check what your heart is doing. These can be requested by your GP or EP. I guess if you were in hospital for three days they constantly monitored you then? There are no strict rules for any periods of AF or PAF, blood pressure can be high or low as can the pulse.

If you ever get pain in your chest, are dizzy or feel sick when your heart plays up then you must always seek urgent medical advice. The longer you have AF, the more relaxed with it you will become with each attack. Saying that I think it took me at least 10 years to become calm about it. The drug Flecainide is the pill that has really helped keep my heart in check.

Let us know what you decide to do.

Best wishes.

Jean

Nenar profile image
Nenar in reply to jeanjeannie50

Thanks Jean,

I am swaying towards getting the procedure done due to my other health issues. And my husband is really worried and keeps telling me to get it done, as he's worried if I leave it longer it will get worse and if i start taking meds, it could cause all other chaos in my life!!

Having read through everyones thoughts, I feel a little better and feel the ablation now is better as a preventative (albeit 80% success rate). I guess I have nothing ot loose, except the recovery, which hopefully will be straight forward.

The main issue is that I run my own company, and need to be active and work 7 days a week with long hours. I absolutely love it - its a passion rather than a job, and have noticed I've been getting tired a lot more quicker over the last year.

Maybe its the AF or maybe the asthma or both!

Also, Im glad you have managed to become comfortable more relaxed with it and the drugs are really working for you!

I'll keep you posted on my plans

Nenar profile image
Nenar in reply to jeanjeannie50

Also, thank you for explaining Artial Flutter and the difference to AF - that actually has really helped me understand this better As BobD has said, knowledge is power! :-)

Hello Nenar and welcome to the forum. It sounds as though your Consultant is giving good advice. Bearing in mind you have a variety of other health issues, it probably would be a good idea to treat your AF because it is generally a progressive condition. I’m not medically trained, but atrial flutter is generally easier and quicker to ablate and has very good success rates and the situation is very similar for AF if caught early. You are young and would face a lifetime of fairly potent drugs which might not help with your other health problems but it will be interesting to hear what others say. However, that’s my view based on what you have said......good luck, and please let us know about your progress........

Nenar profile image
Nenar in reply to

Thank you Flapjack, you've just repeated what my consultant said so thank you for your words. I am considering the procedure, and as you have so rightly mentioned, I do not want to have to go on medication as it will probably effect my other problems which I really want to avoid. Lots of thinking to do! I would have had it done last month, however my mum was on holiday and adamant that she needs to be here when I get it done. So I have a little time to prep and think!

BobD profile image
BobDVolunteer

Barts has one of the top EP teams in the country and Prof Richard Schilling who leads it I have known very well over many years although neither he nor his team have ever treated me. There is no doubt that early intervention has the best chance of a satisfactory outcome since the rogue pathways would not have a chance to get really established. Yes there are risks albeit small but also risks in doing nothing and do you really want to be on medication for the rest of your life with a diminishing return likely leading to permanent AF?

At your age there is no question in my mind although first I would deal with the sleep apnoea as this is often linked to AF and see if that helps. Beta blockers are contra indicated if you have asthma and since these are a common first treatment you need to deal with this situation one way or the other.

Nenar profile image
Nenar in reply to BobD

Thank you Bob, that's very sound advise. I do agree and have been wondering if the Sleep Apnea has been a cause. The pain of it all is that I was given treatment for my lungs (inhalers) to use for a month before I had to go back for another lung function test to then get the verdict for my breathing difficulties. But have now been told not to take these meds for the time being until I have the ablation, as these meds can affect the PAX. I will be discussing this with my lung consultant but I am sure the Sleep Apnea is related to my lung issue which is then related to my heart. What a puzzle - but the good thing is It's been picked up early. Regarding the Beta Blockers - I wasn't aware of that and this makes me think that ablation has to be the way to go.

Thanks you for your words once again

BobD profile image
BobDVolunteer

Forgot to mention knowledge is power so please go to AF Association website and read all the fact sheets there. Ask us any specific questions and we will try to help.

Nenar profile image
Nenar in reply to BobD

Thank you!

BobD profile image
BobDVolunteer

Get that Sleep Apnoea sorted. One of the leading causes of AF. Lots of people use CAP machines with good results.

Nenar profile image
Nenar in reply to BobD

thank you!

Babyr1996 profile image
Babyr1996

Hi nenar wow lots of helpful info you been given I can only support what’s already been said here. As BobD said prof Richard schilling at Barts us the best there is in this field of expertise you are very very fortunate to be under his team!! If he say it’s needed then ablation is needed like others say you don’t want to be on medication for the rest of your life your young and almost otherwise fit from what I read above. If it were me in your shoes ide be snapping him up on the ablation like yesterday!! I’m under Glenfield and on 18th April I’m having ablation for flutter but my cardiologist says he thinks EP will do PVI in time for PAF. As at the moment PAF is settled but got flutters so dealing with one at a time when needed. Like you my Diet is so healthy it can’t get any better but I’m still getting episodes of afl and PAF I have decaf everything I’m doing slimming world and have done the last 2 years and since losing 3stone 10lb my afl and af have gotten worse I don’t know if it’s to do with losing weight I don’t know. But this is only my experience. But I do know if I don’t get a good nights sleep oh boy am I in for a bad day of it!! So sleep is vital well to me it is!!

Sounds like you’ve just about made your mind up to go for the ablation but whatever you decide I wish you well!! But thought ide share my thoughts as someone who is also waiting to have ablation done. But I feel very much at peace about it and I can’t wait to get it done I know initial recovery is what a couple of days or so but it’s worth taking that time out to feel better for longer without having to be subjected to too many tablets long term. You will then be able to then job you so love to do even better and enjoy it better too cos you will feel so much better!!

All the best

Nenar profile image
Nenar in reply to Babyr1996

Hi Babyr thank you so much for your kind words! I am so glad I joined this forum and have had my mind put at ease. Thats a real bummer re the loosing weight and episodes increasing, fingers crossed once you have the ablation it all settles down. The non-sleeping does make my palpation start up again - when I get a good nights rest the world just seems like a better place. Ill probably get the ablation done next month, and hopefully it will be a success! Take care of yourself

Rhspw profile image
Rhspw

Hi Nenar,

I wish you the best! Sometimes people need 2 ablations for it to work. My hubby (who had PAF) was 49 when he had his first ablation. A few years before then his occurrences were just every few months, but then he PAF started to increase so he decided to have ablation. It actually made it worse and they hit a phrenic nerve which causes the diaphragm to become paralyzed which means diminished lung capacity. All to say is there are some risks so make sure you talk with dr and when they ablate, to check on phrenic nerve as they do it. (His was a cryo-ablation and There is only like 4-11% chance of phrenic nerve injury- he was

Just unlucky). He is waiting on the nerve to hopefully heal (which most do heal within a year) before he has his second ablation. Anyway we thought it would be a super easy fix and this hasn’t been the case. I don’t mean to scare you as statistically speaking, things should have gone much better. But just make sure you get all the info, ask your doctor if he checks phrenic nerve as he does the procedure. And make sure you rest and take it easy after procedure. Also I would definitely check into sleep apnea and get a sleep study.

Nenar profile image
Nenar in reply to Rhspw

Hi Rhspw,

I am so sorry to hear about your husband, Im sending him lots of positive energy and hope he recovers soon. I will certainly speak to the doctor about the phrenic nerve - i've not heard of that before, but Im a little spooked as I already have breathing difficulties, and I couldn't handle something making things worse! Fingers crossed your husbands 2nd ablation works x

momist profile image
momist

Hi Nenar. I had two instances of AF last year, one in May and the second in July. I was put on Bisoprolol (beta blocker) and Apixaban (anticoagulant), and also onto a 12 month waiting list for an ablation. I'm a 68 yo man in otherwise good health. Since then I had had no more sessions with AF, and had almost decided that perhaps I should not have the ablation. Others on here have often said that treatment is only about improving quality of life, as there is no real cure and the ablation procedure is both invasive and a form of deliberate damage to the heart. Even BobD has said that it is all about QoL. I had coped very well with my second attack, finding it not too much bother to carefully drive to a safe place and sleep it off.

Yesterday evening at my son's wedding reception, after the meal and just getting into the dancing, I went into AF again with tiredness, nausia, slight pain similar to reflux and a wish to hide myself away in a corner to die. Again, I went to lie down, and I reverted to NSR about 3am while trying to sleep. This morning I was fine. I'm now almost certain to go through with the ablation, when it is available.

Nenar profile image
Nenar

Hi animist, that is exactly how I felt when it happened for me. I thought it was reflux and it went on for 3 days. There was a pain in my neck and I just could feel my heart non stop. I hope it passes over quickly for you, sending you much positivity and I know how you feel. It’s so difficult when your ok, until I guess you have another one and then realise something has to be done. I hope your wait isn’t too long and they can see you quicker, and I am sure it will be a success the first time for you. We have to stay positive, as I believe that also helps a lot x

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