I have a rather different outlook on ablations, after having had two. I would say that unless you are having really severe attacks I would say hold off having one (perhaps with the hope of EP's finding better methods).
I had my first in 2011 but within days was back in Tachycardia and A+E. The periods of fast pulse continued, but now they lasted for days rather than the hours they had been before. I was hospitalised several times and finally when all else failed (even a cardioversion) prescribed Amiodarone (hated taking that).
I eagerly awaited a second ablation, thinking that would make me better. I had that in June 2013 and the procedure lasted 6 hrs. I felt ill for weeks after with runs of tachycardia. For a few weeks after that I thought I was cured, felt so well and lively. Then wham in September back came the unstoppable tachycardia now constant and only halted by having cardioversions. I've had two since last October and am now awaiting a third as my pulse has been a more or less constantly 109 since the start of September. I can tell you it's very disabling to be in permanent tachycardia. I get breathless and tired if I try to walk very far, can just about manage going around the supermarket.
I have now been told that because of the scar tissue in my heart from the ablations it may have made it stiff. The outlook is I may always have this problem and my EP can do no more procedure wise. I am 63 and at times feel my life is over. My love has always been walking, now I can't walk round the shops let alone the coastal footpath. Sorry, but I've kept my mouth shut for such a long time re how ablations have worsened my heart condition, preferring to give hope to people having them.
As I said at the start of my post, unless you are having very debilitating symptoms, my advice (and this is from my experience only) would be look to your diet and fitness levels first, before an ablation. Lose weight and cut out processed foods. Once your heart has been tampered with - well enough said!
I want to make sure everyone is aware that ablations are not always the wonder cure and can make things worse. This post is just my opinion and experience, but a view that is rarely given on this forum.
Jean
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Oh jeanjeannie how I admire your restraint. Reading your posts over the last year or so I have wondered at your resilience and ability to carry on regardless . I think like you and am trying to put of the ablation as long as possible. It has been a great success for lots of people but still must be much of chance as medicines are, a bit of a gamble. Thank you for speaking out and saying what so many of us are worrying about. Every one is different and sometimes people forget this, we are not statistics but individuals with different genetic makeups and our health is in our own hands with knowledge and help from our doctors. Be well. Terry
Yes, we and our symptoms are all so different. However, I do sometimes wonder whether we think something has cured us when it may not have. For instance when in hospital a month or so ago, with my pulse stuck at 160, I was given Metoprolol one evening and when I awoke next morning my heart rate had dropped. Wonderful news they said, Metoprolol is the cure, take some home with you today to use as a pill in the pocket. A few weeks later when my heart started racing again Metoprolol did nothing. Who's to say that my heart didn't go back to normal of it's own accord when in hospital. So many questions churn through my mind. If we can all discuss our thoughts on here perhaps we may hit on something that really helps.
Have you explored all the different drugs ? Perhaps this is a silly question but I've really been round the houses and have eventually found some that I can cope with, just! Having a holter fitted on Thursday to see what's happening. Good luck Trry
No, I must admit I haven't really explored all the drug options. I'm having an echocardiogram soon after my cardioversion, apparently that will help them know what drug may help.
Don't apologise for the truth & so very sorry about the damage that's been caused to you. I can totally understand why the failure of these procedures has led to you writing about your experience. I think it's important that 'both sides' are heard and that failures as well as successes are aired. Just hope you had all the warnings of the procedure spelt out to you as I think that all too often there's not enough emphasis placed on these. Neither are we supplied with the data telling us about the practitioner's experience in the field ( or are we - can anyone clarify this ?). I think it's often best to hear the fors and against & there's no harm in seeking a 2nd opinion either. Well done - you did good ! & you've helped others. Ann
I agree - one of the things worrying me about the possibility of ablation is that I cannot find out how many have been done nor the success/failure rate at the only hospital in my area.
Hi Finvola - I wouldn't believe the statistics detailing the success of ablations anyway. When my EP did a follow up telephone call to me I was feeling well, but he didn't want to hear what I had to say and I wouldn't be at all surprised if he has me down on his list as a success.
Jean - I had planned to talk to my GP regarding his patients' success with ablations and as there are only 2 centres here that deal with them it might be possible to get a picture - maybe not.
Hi Ann - Before I had my ablations I was given the success percentage statistics and understood them, also the pitfalls. At no time was scarring inside the heart from ablations ever discussed with regard to the possibility of it making my heart stiff and not function too well, mind you I probably would have still gone ahead with my first one (I was an ablation innocent). Like everyone else who has had them I was so full of hope for a cure.
It's so good that some people are helped by this procedure and like you I would love to know the true percentage of ablations that are really successful.
Hi Jean - It's so tragic & you must be besides yourself. I've had a couple of ops 'go wrong' and have had to swop new probs for old ones. " First do no harm" lol ...I went out with a consultant eye guy .. He was a really decent man .... on one occasion we were coast walking out of the county ...his phone went off & were heading home. He'd caused a patient's sight to get worse. He apologised & advised her that she must now go to his insurance company & get compensation for the damage he did as his actions had caused her irreversible damage. There aren't many like him but as he said .....We pay into insurances for this very thing. He knew he was the top of his field and was man enough to admit his mistake. There's no amount of money can make up for the distress, especially when it's life changing & Drs/Surgeons also need to 'be trained' -but why aren't they accountable to anyone? Ann
Wow, interesting post, that was some admission by your consultant friend! I'm sure in some way they must be monitored. Perhaps by the Care Quality Commission (if it's still called that). Jean
Who knows Jean ...! All I know is that my experience working with people in the med profession really educated me & because of it my son survived his many congenital probs. When mistakes happened or were about to happen I could speak up & believe me I did !!! What saddens me is that my experiences have stopped me trusting the profession. I question everything because that 'umbrella' doesn't actually exist - well it does but it's got a lot of holes in it. Lol
Hi Shirley - Yes, I can understand your not wanting to take drugs permanently, that's exactly how I feel. From the comments on this forum, in general, it appears there are more successes than failures for ablation, though sometimes more than one is needed. I think I was just one of the unlucky ones with more than the usual rogue pathways in my heart that needed ablating.
I'm so sad to hear you have had such a rough time Jean. It is a big decision and something I'm due to discuss with my EP. Until the patients day this year I was prepared to march into his office and demand I have an ablation (OK not so forceful). Listening to the guest speakers and having a few words with them it's put another spin on things for me. My passion has been exercise and physical activities and for the past 4 months I've had to give so many up. My plan was to have an ablation, hopefully it would be a success and then I would be back up there. After the patients day I'm reconsidering. It was said in a couple of the presentations that an ablation is something to think very careful about. An ablation will not prevent stroke, but if you are very symptomatic and your quality of life is poor, it may improve things, as you are more than aware of. Over the past 4 months I have adapted to not being able to be as active, but it hasn't stopped me doing other things, so having an ablation now concerns me, where as before it was an answer.
I really hope things pick up for you Jean and you can get back to those walks you enjoy so much.
Thank you for your kind comments Jason. Like you I have adapted my life to cope with not being so active. Tuesdays I sing in a choir, Wednesday I attend a local history class, Thursdays and Sundays I am a room guide for the National Trust . None of these require a lot of effort energy wise from me. I have always been a very positive person, my cup has always been half full and I loved my life. However, the possibility of having to live without doing the wonderful walks I'm used to has come hard.
Cardioversions usually work for me so I'm looking forward to having my next one in a months time, would recommend them 100%. I tell you if I get well again I'll take off with my back pack and walk everyday I can. Don't forget this is just my personal view of having ablations I'm sure they help a lot of other people.
Yours is a sobering tale, jeanjeannie, and a wise reminder that ablation may not be the magic wand that we hope for. I know what worried me about it was not that it could be unsuccessful nor that it might cause damage - which indeed it may prove to have done - but that it would result in total oblivion.
Well, yes, that too. But that's there all the time. As I waited for my ablation, I felt obliged to write a sloppy little billet doux to my husband. I did really think that I might not come round. An aunt and another relative didn't when 77 and 62. My aunt had a GA for a fairly trivial op and the other was towards the end of a long operation to remove a lung. Both had had hopes of a good outcome.
Dear Jean, I know how much you have suffered & your post puts this so succinctly. Well done. I do hope that you will now find some medication that will put your life back on track. Do ask your EP about Disopyramide.
I think it is very helpful to us all Jean to have your experience recounted here and I hope you do feel a lot better soon.
I know several people who have had your experience and, like you , hesitate to put the details on the site as they know others are being brave about their forthcoming ablations- it's a dilemma but unless people give the other side of the experience, as you have done, it means we can't make informed decisions.
Some members have had a long period without symptoms after ablation and others haven't. I think the new work involving MRI scans before ablation may help decision making- it's supposed to show existing fibrosis which, if present in large amounts, is a predictor of more limited success with ablation. It doesn't always seem correlated with length of time one has had AF which is interesting.
I am trying to make all the life style changes ( Particulary potassium in diet, exercise and losing weight) and will go for ablation as a last resort if symptoms are really limiting what I can do
I do hope things improve for you and for the others who have had ablation and are still having real problems
Hi Rosemary - Thank you for your reply. Yes, it was a big step for me to take to tell the story of my ablations. Recently a friend was heading for one (her symptoms were not drastic) and I didn't say a word, but when she decided not to go ahead with it I could have cried with joy and told her how pleased I was.
However, for members of this forum who are suffering with quite severe symptoms I would probably say have an ablation, but only after exhausting all other aspects such as diet, losing weight etc. I think you are very wise to be addressing these things. I bitterly regret not seeing how weight loss could have affected my AF, instead I took what I thought was the easy option and went for an ablation.
Jean
HI Jean,
I remember some time ago posting a question "To ablate or not to Ablate" I kind of read between the lines of your response...
Since having my own Ablation 8 weeks ago I have thought on pretty much the same lines as yourself...My own particular problem was I couldn't give up (or more to the point didn't want to) the two very large glasses of wine most evenings, no matter how hard I tried it was always going to be tomorrow.. ( I have written previously about my addictive personality...) consequently the drugs because less effective/affective which ever it is... Following my Ablation,surprisingly I have lost all desire to drink...I do feel that I brought this condition on myself through my own willfulness and self-destructiveness
Maybe if I had changed my lifestyle two years ago when first diagnosed, the condition may just may have been controlled by the Flec and Biso but I shall never know..
I made the decision to go along the Ablation route of my own volition it wasn't forced upon me and I hold my hands up and take full responsibility for my actions...However, like yourself Jean if I were to offer any constructive advice to a fellow suffer it would be to try a complete and I mean complete change of lifestyle for at least 12 weeks before deciding which route to take...
Carol, thank you so much for supporting me. Yes, I bitterly regret not changing my lifestyle years ago. With me it was the chocolate and sweet goodies I couldn't give up. I too implore everyone with AF to change their diet and not be like me and take what I thought was the easy option - an ablation.
You have been a tremendous support to me over the past 18 months which I am extremely grateful....
How am I following the Ablation? The main advantage is being free from the drugs, my heart is "calmish" I have had 4 attacks of AF in the weeks post Ablation the last one being on the Saturday evening at the AF conference in Birmingham ...which I managed to sleep off but felt pretty grotty on the Sunday and the following couple of days...
I still get very tired and have a continuing ache/pain somewhere between my shoulder blades which is dragging me down somewhat...
I don't expect miracles and firmly believe that prevention is far better than the cure...definitely in my case... Accepting my situation I felt there wasn't any alternative but an Ablation for me as the AF had progressed to such an extent in the 2 yrs since being diagnosed walking and breathlessness was becoming increasingly more and more difficult and very very scary ...
There isn't a miracle cure and as I have said before my heart has been well used and abused over my life time...I am very surprised it hasn't let me down long before now and count my blessings daily that it has stood by me for as long as it has....
Dear, dear Jean, how very brave of you to post a different perspective on ablation. Yes we all have to make our own decision but I have hitherto felt that posting a seemingly negative perspective about potential ablation outcomes would bring down those about to undergo or who have just undergone ablation therefore I have not been brave enough to air my concerns, its the coward in me!
I share your thoughts, am currently on an ablation list and in no rush to jump to the top of it. It is so important to hear all perspectives and applaud your decision to share your thoughts and experience. You must be one of the most experienced AF sufferers on the forum and thank you for airing your perspective.
I hope your post brings others in doubt to speak their mind so we can all get a rounded perspective of this and any other treatment for that matter. So many of us speak our minds about AF meds good and bad experiences but it feels almost a no no to raise ablation concerns for fear of appearing negative. So the genie is out of the bottle now (pun intended) so lets hope more people offer their rounded thoughts on the subject of ablation without the fear of being/appearing negative.
You see there are many of us of similar thoughts as the previous responses to your post shows.
I so hope you find a way forward Jean, there must be someone out there (medic) who can give you helpful treatment. Please, please don't give up hope of a brighter future, you are very dear to us here on the forum and we all hate to see you struggling. Anything we can do to support you please ask.
Hi Dee - Thank you for your continued support and being there for me.
Yes, the genie is out of the bottle! It was a big step for me to take and one I thought long and hard about, but I want to help others and perhaps prevent them from making the same mistakes that I made i.e. to continue eating rubbish and take what I thought was the easy option - have an ablation!
I'm booked for a cardioversion in 4 weeks time and they usually work for me, so fingers crossed that this time it will last a bit longer than the one I had 6 months ago.
It's strange you know, but my AF always starts when I'm still and either hunched over my PC or curled up in bed. Never ever when I'm out and active. It has made me wonder whether leaning forward and compressing my stomach towards my heart could be a cause. See, I'm feeling a bit more hopeful now I've thought of yet something else that may cure me.
Hi Jean. I'm so sorry to hear that the situation is worse than ever for you. I must admit that while I wait to get to the top of the ablation list I have been thinking very much about this possibility even without your very honest post. While my E. P. Has warned me about all the risks and about the chance that it won't work , no one has ever hinted at the possibility of worse symptoms! The trouble is that the decision can only be our own. I always like to be left with no other alternative before making decisions like these but at the end of the day it is a leap in the dark for all of us.
Don't give up trying to find a way forward with this Jean. You deserve to have the best possible quality of life. X
Thank you Deodottie, don't worry there will be a lot of hard research before I give up on having a normal heart again. No matter how odd the cure suggestion may sound, if someone tells me it worked for them I will try it. No one ever mentioned to me that my symptoms could be worse after ablations. When I think back I was so very naive. Thanks to all the wonderful members of this site I have learnt so much over the years.
Yes, the decision whether to have an ablation is a very personal one as we are all so different. However, I would beg everyone with AF to try a diet cure first and I mean really try, not be half hearted like I was and continue eating rubbish along with the good food.
Thank you Jean for your honesty I really hope you will find something to help you with this awful problem I really do feel there is an answer out there and thankfully there are people looking for it. in your post you said with the hope of EPS finding new methods please keep a firm hold on that word hope
(There is no medicine like hope no incentive so great and no tonic so powerful as expectation of something tomorrow) I dont know who wrote this. I hope it helps you sound like a very strong Lady and I hope that that tomorrow is just around the corner for all of us. That's a lot of hopes x
Sounds a good quote - really like it! Yes, I'm always full of hope for a cure and if anyone mentions anything that they think has helped them with AF, I will try it. I am strong, but my last visit to hospital where I was told I may have to put up with feeling the way I do really dragged me down. I am certainly a very positive person, but for a while my hope was crushed. Anyway cardioversions usually work for me and I'm having one in 4 weeks time, so at least now I have hope of returning to normal for a while, if not for ever. Fingers crossed.
Dear Jean I am so sorry that your situation has been made worse by having ablation procedure I would also like to thank you for giving a different perspective. A few weeks ago I made the decision after seeing consultant to not go for the ablation option mainly because of anxiety issues but also because my A.F is not very problematic, I am plagued at times with many ectopics though, which he said they could try to get rid of too.I do keep wondering if I made the right decision but I think for now I have. I do hope that there will be found something that works to give you some relief and to give you some of the quality of life back. Thank you for sharing your experience with us, that can't have been easy. My best wishes to you. kath
Hi Kath - I think you are wise not to have agreed to an ablation if your AF is not problematic. I would say with hindsight for you to try and eat healthily and lose weight if necessary. Both things I wish that I had done now that it's too late. Before this recent period of constant tachycardia set in I had changed my diet and was doing really well, but of course I had big lapses when chocolate wielded its hold over me! No more will I be like that now. Gosh it takes a big lesson to make us sit up, I just hope mine isn't too late.
I hope that you continue with your reasonably good health.
Hi Jean, I try so hard with my diet, no processed foods, the occasional glass of wine,trying to move over to more vegetarian diet, my stumbling block is exercise as my heart jumps around so much especially when walking uphill but know I just need to get on with it just bothered that the ectopics might push over into A.F. As a result weight is hard to shift. Did paleo diet 2 years ago and lost about 14 kilo s but unfortunately some has gone back on, which is a bit irritating. You are right it is up to us to take a more holistic approach to our own health. I do hope that your treatment next month gives you some relief, will keep my fingers crossed. My best wishes Kath
Thanks Jean for your total honesty..and your encouragement throughout my treatments.
I was very fit and healthy before AF struck over 10 years ago but I understand your sentiments as I did say to the Team treating me at LHCH I hope this doesn't make things worse or was unnecessary?? That fell on deaf ears.....but the alternative for me was far worse than taking a chance on a PVI. I sincerely hope the 2nd one was the last. Its been approx 2weeks since my PVI and I've just got my energy back. I've read enough on here to not be complacent about my treatment and expect it to ressurect itself at some point! If it doesn't then each day I don't have it is a bonus!
Hi Loo - I so hope that your second ablation has been successful. Yes, there are times when the only option is to take that route. Continue to update us with how you are progressing and make sure you use that new found energy wisely.
Thank you for posting this, I was actually going to post tonight and ask for other viewpoints. I am 52 and have AF all the time ( is that permanent or persistent) I have rate related cardiomyopathy . My ef is 30%. My cardioversion failed, slozem failed, so now I am on amiodarone and have a meeting with EP in dec to discuss ablation. . Must admit most days I feel awful. Manage to get out of bed and work 3 days, but when my day is over am shattered. At the moment I am prepared to give ablation a try.
Hi Jo. It sounds as though you have made the right decision to go ahead with your ablation. I will be thinking of you and waiting to hear how it all went. My symptoms before I had mine were spells of tachycardia which never lasted for more than around 8 hours. Then I would feel exhausted for days afterwards. This happened around every 6 weeks.
We cannot help but let AF rule our lives as it has such a big impact on our wellbeing.
Dear Happyjo, I have just read your post to jeanjeanie and notice you have AF with ventricular bradycardia, I have the same problem and at the moment my cardiologist has said he wants to hold off from doing any treatment as he is worried it might make me worse. I have been given very little information about lifestyle and how much exercise is okay and at what point it can put a strain on the heart - maybe they don't know?
I was diagnosed last year, consultant thinks my condition has been missed or misdiagnosed and may go back about 40 years, I am now 57, it would make sense in terms of symptoms and problems I have experienced over the years!
i just wondered if you had any advice or suggestions you might be willing to share with me? I am less active, unable to do high level mountain or fell walks but have just managed some gentle walking in Tuscany, something I didn't think I would be able to do a year ago. Bryonny
It sounds as though you have no choice other than to try an ablation.
I must ask however if you have tried having a healthy diet?I discovered too late what a beneficial effect that can have on we folk with AF. I have cut out lactose and wheat products and never eat processed foods. I was feeling extremely well until this last bout of PAF started about a month or so ago (while I was sat hunched over my PC). I too am on Amiodarone pending yet another cardioversion in 4 weeks time. Fingers crossed that it works as they usually do. Thank you for your input.
On a hopeful note jean, I was fortunate to attend the Surrey cardiology conference recently and Prof Camm was talking about new developments for AF- there seem to be several new things in the pipeline- one was a derivative of Amiodorone which was taken as an injection when needed- not sure of all the details as it's not available here yet- but it does mean researchers are on the case for Af so hopefully new things will become available in the near future.
Hi Rosy - A few forum members have made suggestions regarding different medicines I could ask to try. The one you mention being a derivative of Amiodarone sounds interesting. Amiodarone was the only AF drug I could take that didn't make me feel ill. Saying that I started taking it again a week ago and this time it has the opposite effect and I feel really rough. Tomorrow I cut down my dose a little so I'm really hoping the ache in my back and feeling of nausea will disappear. If my cardioversion next month works, the cardiology dept are going to do an echocardiogram. I'm told that this will give them some idea as what drug to prescribe next - not heard of that before.
Thanks JeanJeany, you have had so many replies, now of course you might remember that I was advised against ablation as recently as this year after 2half years. Ablation was discussed with another EP at the beginning of this condition but I chose not to get one, as was also advised that there was no guarantee of curing the problem. I thought then why tell me about a solution that doesn't solve the problem after all its an operation at its lowest of 3hrs duration, and I was of the opinion then that going under the knife was the last option yet no other solution was given to me except medication which was sotalol at the time, and just mimicked the condition as far as I was concerned, which was why they put me on Amiodarone, which I have slowly tried to reduce as you know.
This with the proper diet and another diagnosis and pacing myself for other activities seem to be working to a degree, although in itself is not a cure either. I have been healthy most of my 72years and am disappointed that in this century there has been no other research or attempt at curing this nightmare of a condition and coping with it has been left to ourselves.
I hope that everyone including EPs Cardiologist and GP's would look at other alternatives or try to get some proper research done its time it was.
Keep trying to smile and keep going as you always do.
Thank you for your reply, the response from the caring members on this site has been overwhelming and heartening.
I admire the path you have taken. It's strange but in the years before I had my first ablation I had a strong belief that the answer to a cure for my PAF lay with me, if only I could find it. I did discover how artificial sweeteners, additives and eating cakes or chocolate would trigger an attack and my condition improved a lot once I stopped the overload of additives I had been consuming. However with the chocolates, biscuits, sweets etc I was weak, I bitterly regret this now and rarely have them. It's so foolish to fill our bodies with poisons that do damage. I feel like a mum giving advice to her children when I say this, but of course on the whole children take no notice.
I'm sure that once those rogue electrical impulses have gained strength on their route to the heart, that pathway may be difficult to undo without an ablation. As you say lets hope that the experts discover a cure for AF to nip it in the bud.
Jean, what a moving post. You were one of the first to welcome me here when I landed in the forum scared and confused 16 months ago. I am now at the point of moving towards ablation as the drug therapy isnt working for me and I have another 23 years of work left before I retire. Its the only option I have left. I am willing to take a gamble, I have to or my life is already over at 42. In Japan they have said there is a 60% chance of being cured, AF free for 5 years or more. There is (they say) an 80% chance of a less permanent fix which could take me down to 1 or 2 episodes a year. Even with those odds I'll give it a go.
Im on the last chance drug at the moment, Rythmodan, which seems to be working fingers crossed. I feel better over all but the episodes when I get them last longer and are at a higher rate. However, I am having less episodes than with sotalol.
Jean, chin up. Im praying for you and sending my best wishes from the other side of the rainbow, Shikoku in Japan.
Hi Jap - Thank you for your lovely words and support. I haven't heart of the drug Rythmodan - must look it up. When I think about I wouldn't say that I had tried that many different types of drug, don't know why that would be. I think I'll make a list of those I've had and take it to my AF nurse next week. Thanks for giving me that thought.
Thank you Jean! I fully endorse lifestyle changes first - you wouldn't believe how many different things I have trialled over the last 6 months and it's great to have the ablation option if all else fails.
Me too, have been gluten and lactose free since last May and it has helped my digestion problems no end. I also try to stick to the Fodmap diet, brilliant suggestion from someone on this site, I'd never heard of it before. It probably wouldn't have occurred to me to do this myself and I thank all the members of this forum for sharing remedies to try which have helped them.
Well that worked Jean! I think everyone has said it all but I do hope that you won't hold back saying something that you wanted to say in the future. All experience and opinions are valid. I too am so very sorry you have had this problem and hope you find something that helps, maybe less time on laptop?
I have found that Pilates has helped me a lot, this may sound weird but I have found strengthening my core muscles helped strengthen everything else, including my spirit. Just wonder if this can be helpful with any vagal induced arrythmias? As I can't do aerobic exercise anymore finding exercise I can do is difficult. You can do Pilates at almost any level, there are ladies in their 80's & 1 in her 90's in a class I have been to, our teacher just adapts the exercises to what we can do. It has improved my posture so I don't slouch over the keyboard.
One clear, emerging theme is that if you want to take a more natural route with diet, exercise and things like massage, energy medicines there is little or no help available unless you have had a stent put in or have cancer, then it seems automatic, but otherwise help and advice and encouragement is in short or no supply on the overstretched NHS.
Hi CDreamer - Yes I think it's all been said now. I hope that one day soon I too will have the strength to exercise again, it's such an important part of leading a healthy life. After my first ablation I was able, through my GP, to attend the gym at a reduced cost for a few months. It did help a bit, but I found it so boring and my returning PAF soon put aid to going there. The trouble with AF is it's so draining so it doesn't leave is with a lot of energy for anything too strenuous. For me walking in the countryside with others, who I think gave me energy, was my main enjoyable exercise option.
Thank you for your support.
Dear Jean, thank you so much for this honest and thoughtful post. It takes real guts, especially as we all want to be so positive about our options and outcomes. I'm just really sorry that you've had this experience and I hope that your condition improves - your heart may improve by itself, or perhaps there is a drug they haven't tried yet?
I must admit, with a handful of episodes a year I haven't even considered ablation, partly because my cousin had two that went badly - in the first the doctor pierced the pericardium (the sac around the heart) and in his words, he nearly 'bought it' and in the second he said his heart went wild and they had to abort the ablation. So I know things don't always go right.
I'm sure you're right, that if your quality of life is already poor ablation is well worth a try, on the basis that things can only get better. You've helped me to get some perspective on my stupid reluctance to give up sweet stuff - if it helps me to stave off serious intervention, it's something I should do. I am incredibly grateful for that. Take care, I'm wishing you better health...
Hi Lis - It took a lot of thought for me to write on my experience of ablations. I didn't want others to feel put off having one because of what I had written. Then when answering another post on here I managed to put everything I felt down and then I slightly adapted it and transferred that message to be a post of it's own.
I think the heart is a great organ for healing itself and I hope it will do something to improve my scaring so that it can function better. My sister, who lives in the States, tells me how her husbands heart has made new connections by itself to improve it's blood flow. Just amazing really!
I'm sure your family experiences have made you more aware, than most people, that hospital procedures are not always perfect. Strange how we always have to learn some things the hard way.
Well done for changing your eating habits. I know that doing the same has really helped me - I just wish I'd started eating a healthy diet a lot earlier. My chocolate, sweet, cake etc, cravings have all gone - I would never have believed that could happen as I had such a sweet tooth. I guess the truth is I'm afraid to have them now in case it makes my condition worse.
Wow, Jean, I just want to give you a hug, my friend. You certainly have rallied a great deal of support here and I hope that warms your heart. Thank you for your honesty in expressing your opinion. I couldn't agree more. Lifestyle change is the answer to so many conditions and I am so thankful that my EP has long beaten that drum and has always made it clear that the medications and ablations are there, if the burden gets to the place where it interferes with daily life, and absolutely the can be the way to go. Ablations can be life changing in the most positive way, but they can also be the opposite, as you have experienced. My EP he has always stressed that the medications and the ablations carry such heavy risks that it is best to make drastic lifestyle changes early on to avoid it. I too have held my tongue about the extent of possible complications because we are here to support, not to frighten.
It is fascinating that every day I read more evidence that we can change our genetic predispositions with healthy diet and exercise. It really can turn off genes that may give us heart disease or cancer. I wish people would stop shrugging their shoulders and say, "well, it's in my family"
It is never too late to get healthier and I am hoping that there is a way for you to be able to make some lifestyle changes that can improve how you feel and improve your energy so that you can get back to walking those footpaths. You have a ton of love and support here. Wellness is the goal, lifestyle is the path.
Thank you for your caring support Grandma. You are one of our inspirational leaders on this forum and I value you and your advice more than you will know. As I have said in a previous post when I keep advising on a healthy diet I feel like a mother nagging to her offsprings, she wants the best for them and I want the best for everyone on this site. Do offsprings listen? Generally they have to learn they hard way, by themselves through experience. It's such a shame, but I guess we are all the same.
I agree with you that we are here on this forum to support and not frighten other members, but at the same time I feel it's only fair to others contemplating ablation that the true facts are known. If it's just positive posts that are put on this site, because those of us who have had a bad experience after this procedure don't say so, then that it is misleading.
Wishing you continued good health from your healthy diet.
You are so, so right. I am a conflict avoidance person by nature, and not one who likes to stir the pot, so I try to only say the positive, but that can be a disservice. It is really important to know the down side when making choices.
From years and years of caring for patients, there is one thing I know, and that is the majority of people want a pill or a procedure o fix their problem. Of course there are very necessary surgeries, procedures, and medicines that save lives. But for things like hypertension, diabetes, heart disease and even many cancers I feel like Glinda, the good witch from the Wizard of Oz saying "you had the power all along". Heredity plays the smallest part in what ails us. I am thrilled to see Lifestyle Medicine being taught in medical schools now. Here in the US Tulane University just adopted a major nutritional component to their medical school curriculum, and the CHIP program that changed my life is now being taught in medical schools in California. Food is medicine. Exercise is medicine. Good sleep, and stress reduction change the way your body functions. We've had the power all along. Jeanie you know I wish you only the best on your journey. Huge hugs. Be well.
Sadly, I do know what you are talking about since I had 3 ablations within one years time, all being unsuccessful.
At this very moment I am having a flutter or AF, I can't tell anymore. Just because I went for a walk with my dog. I am 44 year old and have two children. The tiredness and breathlessness are very debilitating and makes me skip fun activities because I am too exhausted. This makes me feel very guilty as well.
My EP says it is all a coincidence and my current problems have nothing to do with my ablations which I believe is just not true and I think he knows that too.
I didn't have very debilitating symptoms before the ablations. I had 8 episodes a year. It was very annoying, scary even,but I did not feel the breathlessness or dizziness that I experience now. But all the EP's I consulted told me to go ahead with the procedure because the success rate would be much higher when they did it at an earlier stage.
So it is always very difficult to make a good decision. I never ever would have thought that I would be off worse than before and I think that's an issue the EP's don't like to address.
Hi Nikita - I'm sorry that having ablations has left you feeling worse too. I do think and hope that we are in the minority and that most find a better standard of life afterwards.
I understand totally how you are feeling, makes you feel a real party pooper doesn't it! I also think that friends and family just start to accept your condition and are not quite so supportive as they were at first. Is that your case? My daughters make all the right noises, but they're so used to me telling the same story, that there's little energy for me to do much, they just accept it without question now.
Have you changed your diet? Doing that has really helped with my energy levels.
What are your EP's saying now. Have they said there is no more they can do for you and have you ever had a cardioversion? What medication are you on?
I have recently joined this site and wonder where you had your ablations done. I have had four, three for PAF the same as you and one for Atrial Flutter which was orginally diagnosed, but I think this was misdiagnosed due to the fact they couldn't spot it during the procedure! I changed consultants after that!!
I have read very recently that some food can trigger it, although have not done anything about it, but have started to see whether this is true or not. As you probably know wine and coffee can. Not sure of what else, but noted you said processed food, I do not eat much processed food. What have you tried to cut out and is it working?
I also learnt last March when I was on holiday in North Shields and was admitted with a very bad episode the doctor there told me that apparently most AF are in a certain place so electrophysicians ablate where they think it is, but apparently in some people (which must be you and I) it is in a totally different place. I wonder if that is why it is successful in some people and not others. It also brings me to the conclusion that does it mean that where we have been ablated was unneccessary!!
Hi Independ - I will PM you with the name of where I had my ablations carried out. Where did you have yours done?
I have cut out gluten, lactose, sweets, biscuits, cake and try to follow the Fodmap diet as best I can. I was feeling really well until this last bout of constant Tachycardia. When I was first diagnosed with AF I found that by cutting out artificial sweeteners (which I was overloading my body with, thinking it was the healthy way) I had lots fewer episodes.
That's interesting what you say about the source of the rogue beats being different in some people. My GP has told me that my extra beats originate from an unusual source. Wonder if my EP knows that, he always manages to lose or not see any ECG results my GP faxes to him.
Being new to this site, I presume PM means private messaging, how is that done? I feel a lot of stuff is kept from us, i.e. was totally surprised when the doctor told me about the AF being in a different place, was never told that by my consultant. I also find it frustrating that we cannot ascertain a list of the best EPs available. I researched and hoped I got one of the top ones, but what happens is that you are not guaranteed to get the one you pick, (unless you go privately) i.e. although at the same hospital, I only had one procedure by the one I had researched, I had two different ones by 2 others, the last by a robot because I was told this was more accurate and I was not conscious for this due to the fact that the prior one to this I had felt severe pain for the last 45 minutes of that procedure. The first ablation I had done they mucked my leg up and it took me roundabout three months before the blood clot dispersed and I could walk properly again, but as you can see it didn't put me off having more! Although having read your experience it has got me thinking. I know they make part of the heart dead so to think. I went into a research programme. The first procedure I had was for the freeze method. It didn't work. The miracle of my body had healed it!! So the next two were the usual burning method.
It is impossible to tell you all my experiences on here, but if you want me to telephone you I am quite happy to do that if you live in England. I offered my services to the consultant and to the GP to talk to people a
I have repeated the last sentence as it sent it without my fnishing!!
I offered my services to the consultant and to the GP to talk to people about my experiences, but they said they couldn't because of patient confidentility! I know i would have benefited from that.
By the way I am the same age as you and have had this condition for 17 years.
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My ablation that never was
Who will do my ablation?
different ablation experience.
