Can things be made worse???

[Kellyjelly]

I think I might be facing the decision very soon as to wether I have an ablation or continue to be medicated. I was just wondering if an ablation has made anyone’s symptoms and frequency of PAF worse in the long term? I hate living with this but I’m so scared to interfere with my heart as I’m sure anyone who has faced this decision can understand.

[RiderontheStorm]

Made things better for me. It's always a risk using drugs as it may not last and your heart gets in worse condition as It was told to me by my cardiologist. So After about 2 years and more and close AF events I had it done.

[Kellyjelly in reply to RiderontheStorm]

I’m happy that it has made things better for you. I have been on flecainide for a long time and I fear things are going the way you describe. It would probably have been more positive to ask the question how many people have not regretted having an ablation and feel like it has improved their symptoms 🥴

[wilsond in reply to Kellyjelly]

I have decided not to at the moment.This is because I have been able to come off flecanide and bisoprolol as a daily dose onto PIP only,and have fewer and fewer Af and flutter episodes. My EP is keeping me on his list to see if I maintain it.

As he said,ablation is for qua!ity of life ONLY not a medical intervention,and as he said to me 'if your symptoms are very well controlled,you will not notice a beneficial effect' This was in the last few days,so up to date advice.

I hope it continues but am well aware that af has a mind of its own and may come back with a vengeance.

I take regular Kardia readings to reassure myself im not having silent AF,and am due to have an echo cardiagram soon.

Its a real dilemma.How do you feel i AF ,how often do you get episodes? How well do you tolerate flecanide?(sure it made me worse,definetly put me into f!utter after a week)

what does your EP say?

Hope you come to the decision thats right for you. We do read on here of people coming out worse,but also many who feel great!

Best wishes

[Kellyjelly in reply to wilsond]

I completely understand why you have made that decision.

My story is rather long and has been very difficult to get a diagnosis and be taken seriously. After 30 years I’ve finally been referred to an EP! I have been on flecainide 50mg twice a day for 12 years and it really has been great for me but recently I have had a couple of very symptomatic episodes of atrial flutter and my heart has started racing after every meal and randomly for no apparent reason. It’s getting me down and really affecting my quality of life. I have tried beta blockers recently but really couldn’t tolerate them.

I guess I will just have to wait and see what the EP says and take it from there, even though I’ve waited so long to see someone that may be able to help me I’m stupidly scared of meeting him and what he will say!

I hope so much that your heart will stay at the level it is now and you will continue to have good control over this horrible thing

[JohnEagel]

Well, as BobD always says, we are all different. I am coming up to my 2 years post ablation and it was one of the best choices made in recent years.

I do have my PVCs and some PACs once in a while and a few every day and sometimes they still scare the sh.. out of me. But P Afib as I had it in 2016, 6 times a year, every time up to 4 hours, 4 times in E & A, that is history. After the ablation I had up to 8 month sometimes shorter events but just for minutes, all back to NSR in no time.

Still taking Pradaxa and Metoprolol but not a single visit to A & E. And with every kg. lost life is getting better.

If I'd had to make the choice again I would not hesitate a sec. The sooner the better.

Cheers

JJ

[Kellyjelly in reply to JohnEagel]

Thank you so much, it must be heaven to be free!

[val757]

I’m just over two years post ablation now, am still free of the dreaded AF and have no regrets whatsoever. Before ablation my episodes of PAF, although infrequent, were extremely debilitating, resulting in two ambulance trips to hospital when at its worst. Medication didn’t help much and indeed made me feel quite ill so it wasn’t a hard decision to make for me. I’m doing all I can to get and keep fit and well but I would have an ablation again without hesitation if needed. Ablation is nothing to be scared of but of course any decision depends on how poor your quality of life is without.

[Kellyjelly in reply to val757]

It’s the debilitating nature of my episodes that is the hardest part to cope with both physically and mentally. To be free if that threat hanging over me would be incredible. I’m so happy that you have benefited so much and feel so much better

[mikeymike7]

It took me five years to go from infrequent PAF to PVI using a cryoballoon procedure. All those drugs and hospitalizations disappeared overnight. Four years down the line and still get ectopic runs now and then but no debilitating AF. Was variously on bisoprolol, sotalol, warfarin, aspirin, flecainide and amiaderone and all the while my AF got steadily worse. I still have sotalol as a PIP but it is really a mental crutch. I do take magnesium supplements but nothing else. Don't read the Internet and don't wait until your QoL is so crap that you'll undergo anything to make it stop! Which is what I did.

I had an opportunity to have the ablation early doors but was too frightened to go for it, so I wasted five years of my life with the sword of Damocles continuously hanging over my head. I became agoraphobic and needed counselling to get back to normal. Such a shit condition!

[Kellyjelly in reply to mikeymike7]

I can really relate to your post. Since my last episode of AF which included SVT and terrifying atrial flutter I have really struggled with going out and getting on with my life. I am so glad that you have come though all of that and are feeling so much better.

[jedimasterlincoln]

I've had 5.

I don't think any of them has made my condition worse, it's just taken that many to try and sort it all out.

Obviously at the back of your mind is that fact that the heart isn't meant to have wires in it and stuff done to it and it could create problems, but I was so debilitated from PAF episodes and breaking through medications so often that it was really my only choice.

[Kellyjelly in reply to jedimasterlincoln]

Wow 5! The thought of that from where I am right now seems utterly terrifying. Has it given you a better quality of life now? Are you facing anymore procedures? How has recovery been after each time?

I just don’t know if I would have the strength and courage it takes to face what you have been through

[KMRobbo]

I had an ablation just under 13 months ago no afib since, off all drugs since May 15th 2018. Brilliant. Had a problem with flutter after my afib ablation so had an ablation for that as well and had no more flutter since that day almost 12 months ago

[Kellyjelly in reply to KMRobbo]

That is so fantastic! I’m absolutely loving the fact that I was being really negative and felt scared when I posted this thread and all the responses have been really positive! Thank you

[AIW58]

Hi like you I was in a dilemma over whether to go for an ablation. Although my history is different from yours. I used to get couple of episodes a year of fast (150-200) AF a year lasting 4-5 hours. Never went to hospital with it. Saw a cardiologist last year as I was getting monthly episodes. He started me on Flecainide 50mg twice daily and put me on waiting list for ablation. He said the policy was to try meds first but in his opinion having an ablation was a no brainer. What reassured me was that he said my heart wanted to be in sinus as there were bouts of SR coming through (I had lots of 'tapes' as I put them in patients so was able to record my own episodes quite often over the years) so I feel having an ablation will help my heart win the battle! I've not had any AF since starting the Flec and the mental relief is immense. As I say like you I worried that an ablation would make me worse after reading some of the posts here. But I'm decided to go for it (March 28th) and find the positive posts here reassuring. After all the NHS isn't going to fund procedures that don't have generally good results. I don't think AF goes away on its own so although the Flec is currently working for me I would like a longer term (I hope) fix.

I am so appreciative of this forum as without it I'd be far more anxious about what to do.

I hope all goes well for you.

Amanda

[Kellyjelly in reply to AIW58]

Thank you so much Amanda, that reply was so helpful. I hope it goes really well and you will get the longer term fix 🙏

I too am really grateful that I have found this forum, this condition is very isolating and has so many different symptoms and variants that it’s good to be able to reassure yourself by asking all the weird and wonderful questions that pop into your head that only fellow sufferers would be able to relate to and understand.

[Brizzy5000]

I think you have to consider your quality of life with AF, mine was a no-brainer I had lived with AF for ten years or more controlled by drugs but was giving the opportunity of an ablation as my QOL was getting poor, in the last 3 months before my ablation I was in AF for 3 to 4 days at a time with maybe a day or two inbetween when I was ok, since my ablation last May, I have been AF free so I'm very very pleased with the outcome, but we are all different, the choice is your's you have to make the decision that is best for you.

Good luck

[Kellyjelly in reply to Brizzy5000]

That sounds so awful and I’m so happy that you now live your life AF free!

[AIW58]

Definitely. Knowing there are so many of us afibbers around is less isolating. Being able to share with people who understand. I'm grateful to the cardiologist for the referral for the ablation but I disagree with him about triggers. He said you'd go mad looking for them and to just do as I want. I'd said white wine was actually trigger for me. I think we who get AF can recognise what may start off an episode.

😊

[Kellyjelly in reply to AIW58]

I think you are absolutely right, for some people the triggers are very obvious. For me it was initially hormones but over the years I think other things have affected it. It always amazes me when you tell the doctor that something affects your condition and they refuse to accept it???? You know your own body more than anyone else.

[Barb1]

You need to have an in depth conversation with your EP, as an ablation that reverts you to SR does not necessarily mean that you will be off medication and definitely not off an anti coagulant anyway.

[Kellyjelly in reply to Barb1]

I am meeting him for the first time on 1st March and have so many questions to ask. My AF is paroxysmal and I take flecainide twice daily that has worked really well but doesn’t seem to be helping as much. I’ve never been on an anti coagulant.

[Barb1 in reply to Kellyjelly]

I think that before the 1st you need to research the pros and cons of anti coagulation. Even if you don't meet the criteria, which is there as a guide only, you can still request it.

[Kellyjelly in reply to Barb1]

Someone else has mentioned that to me. My doctor said that as my CHAD score was 1 I didn’t need it, the cardiologist said the same. I haven’t thought much about it but will have a look on the internet. Any idea where I might get good information from?

[Barb1 in reply to Kellyjelly]

If you search on this site there should be the info and if you cant find it ask one of the Admin. At our last arrhythmia support meeting a consultant told us, that if the CHAD score doesn't suggest that you should be offered anti coagulation, you can still ask for it. They are just not allowed to suggest it. Even though I am at present in SR there is no way that I would chance an AF related stroke. It only takes 6-8 minutes of AF (which you may not notice) for a clot to form. Anti coagulation does not stop the risk altogether but it certainly lessens the odds.

[Kellyjelly in reply to Barb1]

Wow, I didn’t know that! That is very scary. I will look now, thank you so much.

[Adiepie]

Had a crying balloon ablation nearly two years ago, which got me off ACE inhibitors and calcium channel blockers (couldn’t take beta blockers as they completely flattened me) had the ablation due to repeated PAF including being blue lighted into hospital! Also had micro angina. Now feel much better, just a few episodes of PAF and much less micro angina. Better still, much less medication! On list for a touch up RF ablation in the next couple of months, hopefully that will reduce my symptoms still further. Still intend to remain on DOAC through choice, CHADVAS score is 2

[Kellyjelly in reply to Adiepie]

So many positive experiences, thank you it really helps 😊 happy to hear you are feeling much better

[Adiepie in reply to Kellyjelly]

Absolutely no regrets! My wife also had her ablation last year, infinitely better QoL after hers as well

[Kellyjelly in reply to Adiepie]

Did you or your wife find the procedure painful and was it scary? I’m such a scaredy cat!

[Adiepie]

No problems with mine at all, my wife’s was a little uncomfortable at the time, but no regrets

[Kellyjelly in reply to Adiepie]

Thank you so much for all your help!

[doodle68]

Hello Kelly I have thought long and hard about ablation but have refused one so far. Having one is a last resort for me , I am trying lifestyle changes first with a view to halting any progression of my P-AF which is long standing with occasional episodes lasting up to 15 hours.

The point of having an ablation but would be to improve my quality of life which is ok most of the time, I have learnt to live with my P-AF and to manage the unpleasant episodes.

I take Apixaban and Nebivolol, the latter partly to lower my blood pressure and if I had an ablation it is likely I would need to continue with both forms of medication so no gain there from having an ablation.

So for me the ablation would be about eliminating the episodes and preventing the progression of P-AF and there is no guarantee it would do either so I opt for 'the bird in the hand' of being P-AF free most of the time and coping rather than 'the bird in the bush' of any benefits of which there may be none.

There are a number of things to take into consideration when deciding including your age, other illnesses you may have, how you cope with medication and personal circumstances. I am 70 which is not the same as being 40 and facing half a lifetime of episodes or permanent AF. I live alone miles from anywhere and if the ablation caused problems I would find it difficult to cope and look after myself.

A good thing to do might be to write down all the pros and cons of an ablation to help you decide .

No one can really tell you what is best for you, we are all so different and ultimately have to make the decision for ourselves . Good luck whatever you decide

[Kellyjelly in reply to doodle68]

Thank you for your reply 😊 it’s good to have so many experiences and stories to draw from. I do know that the decision rests with me and no one can help with that. It is so reassuring to hear so many positive experiences and ways that people cope and how they ultimately come to their decisions.

[jgolay]

The change in my quality of life after cryoablation three months ago was night and day. Shortness of breath is gone (thankfully) as well as Afib when cold, hot, after meals, when hungry, thirsty, excited, tired, etc. What a blessing! I’m not so keen on continuing anticoagulants (apixaban) as there’s a slight chance it’s related to my suddenly worse joint pain. My dry macular degeneration suddenly progressed to intermediate stage and I can’t find anything linking that to apixaban so it may be a coincidence but I still wonder about is since we’re still learning about NOAC side effects. I have also lost vast amounts of hair. Being 69 and female gives a Chadsvasc 2 so that’s a dilemma. It is absolutely wonderful to be in NSR except for the occasional brief blip — I would definitely have another ablation and the sooner, the better. Best of luck with your decision!

[Kellyjelly in reply to jgolay]

Thank you so much, it lifts my dodgy heart to hear such positive stories! Like you my heart is now being triggered by lots of different things, it’s so annoying and impacts my life so much. I hope you just continue to feel better and better 😊

[Dodie117]

I had ablation in 2013 and so far AF free. So it gets my vote but totally understand your concerns.

[Kellyjelly in reply to Dodie117]

Thank you so much and really happy to hear another happy ending!

[lizardo]

Hi Kellyjelly (love the nickname). I can only report my experiences with ablation and hope it gives you the courage to go ahead. I had a PVI performed for AF and for atrial flutter together on 17th January (5 weeks ago). I was diagnosed 5 years ago with AF but in hind site I think I had it much longer than that. I have had some very anxious experiences in my life over many years and I have no doubts that these are what brought on my AF. I worked very closely with an EP before I retired whom I had huge respect for. As I definitely had AF and had a five times risk of stroke than the average population, I chose this EP as my cardiologist. As I had so much faith in this doctor when he suggested ablation, even though I was asked if I had any questions I needed to ask, I trusted him implicitly and said go ahead. For the people on this forum who have Scaredy Pants Syndrome, there is nothing to it. I awoke full of the joys of spring and remained so forabout 4-5 days. Then the rot set in. I was in AF constantly, breathless and feeling totally worn out. This took a lot of comprehending and caused a lot of anxiety. I also had a loop recorder implanted in my chest when the PVI was performed so I knew that my EP was receiving an ECG of my naughty heart movements every day so tried to work on my anxiety. Eventually I began to learn to listen to my body and if it said go to bed I went and if it said take the dog out for a short walk I did. Last week I began to feel as though I was turning a corner. I saw my GP on a routine visit and whilst I was still in AF, she said if my heart rate was under 100, don't worry about it. It is kindly keeping between 80 and 90, so I have decided to not waste my energy on anxiety. So far so good. Long may it last. I am prepared mentally for the occasional hitch. If I need a second ablation, I certainly do not have any concerns because it was a piece of cake and may be necessary for complete obliteration of this rotten condition. It is so different for many people but it is so good having this forum where we can air our experiences with each other and realise we are not on our own. All I suggest is keep on your anticoagulant because stroke is our biggest worry. I lost my first love of 55 years this week. He had AF but was not as vigilant with instructions for his condition. He had a huge stroke on Saturday and was dead by Tuesday. Sorry to end on a sad note.

[Kellyjelly in reply to lizardo]

I’m so sorry that you have suffered the loss of your love and I cannot begin to comprehend how that must feel after 55 years. I know I am a stranger but I send you strength and courage through this hard time.

Thank you so much for sharing your ablation journey with me, I really do appreciate it x

[Kellyjelly in reply to lizardo]

Ps. Kellyjelly was preferable to the nicknames of kellywelly or smellykelly that I had at school 😂😂😂😂

[lizardo in reply to Kellyjelly]

Kids can be so harsh with their nicknames. Incidentally I never married my first love but we have always remained friends and 12000miles separated us.