Hello lovely people. I have an appointment with my cardiologist/ep on Thursday and am trying to cobble together as much info and as many opinions as possible.
I know that none of us are medics but we all know what AF feels like and some on here are so well informed on the condition.
I'm in permanent AF and struggling to find medication that keeps the rate low enough. Ablation is out for me, due to also having HCM. It's all getting a little exhausting and interfering with my QOL, more than I would like.
We are still looking at other medications but options are fast running out.
Pace and ablate has been mentioned to me, though ideally they would like me to be a little older!. I'm 68yrs.
What I'd like to ask is, for opinions , pros and cons, for taking this last procedure?
Especially would like to hear from those who have already taken the jump, are you glad you have or do you wish you hadnt and from those of you who may be considering it and anyone else with a view.
Thanking you all in advance. Sue.
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Nannysue1
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Hi Sue, have you considered a mini maze as an alternative? What part of the UK are you in? I will leave others to comment on their experience of pace and ablate but I do know of people who have had the mini maze instead.
There are more NHS centres offered hybrid or thoroscopic maze that I realised as I’ve been doing more research. Are any of these surgeons in your area? I’m afraid you would need to do your own research on how many procedures they are actually doing but all do thoroscopic/minimally invasive afib surgery. X
Ignore Wolverhampton, I now realise that Coventry where Ducky has been offered a hybrid and Oxford who also has a surgeon are prob nearer you, but the other 3 are in London. X
I had already had a pacemaker for several years before I needed the AV Node Ablation just four years ago. Since then I have no longer been aware of AF, though episodes are still getting recorded on the pacemaker. And I no longer need to take Flecanide. Am under an NHS London hospital for cardiac and all my other health problems. First class treatment and outcome.
Thankyou fir taking the time to reply, that sounds positive
Hello Nanny, I’m not very knowledgeable about Pace and Ablate but I know someone who is. I’ve made CDreamer aware of your and if she sees it I’m sure she will get in touch……
Hi Sue I had the procedure in 2018 aged 70 very pleased with the result as I had very symptomatic paroxysmal AF and was continually going into hospital It was good to get my life back to normal
Sorry to hear about your heart issues. I hope they can be sorted out quickly.Regarding P&A, I've read patient's reports when an alternative thoracoscopic surgery (keyhole to the outside of the heart) sorted the rhythm problem.
I've also read report where patients were happy with the P&A route.
Hello Sue, I was in permanent AF for nearly seven years. I had all the drugs going two cardioversions and three ablations. My quality of life was getting worse, unable t walk up stairs or more than a hundred yards after being reasonably fit, swimming every week and able to walk where I wanted. I was offered Pace and Ablate at 71 years old and decided fairly quickly that if it was offered I’d accept. I had every confidence in my EP that it was right for me. I had my Pacemaker last June and my AV node ablation was meant to be after six weeks but didn’t happen until the end of December due to Covid. During the interim period I didn’t feel any benefit but after six weeks the difference was amazing. I came back from the hospital and walked up the stairs without thinking. The improvements have continued and I don’t regret it for one minute. I have no breathlessness, have lost weight (not so many drugs), can lay down flat in bed , dance and swim again and generally enjoy myself. Any questions please ask and good luck.Lynne
I’m 78 and in exactly same position as you. Flecainide has stopped working as have Nebivolol and Digoxin. I have a three day heart monitor from tomorrow and see the EP 7/7 re pace and ablate
Hi Sue, I’m following this with interest as have also been offered a pace and ablate. I’m 62, at present I’ve declined,choosing to keep it as a last resort, I haven’t really got a good reason for this except it feels very final and if new procedures like the hybrid mimi maze become more readily available it wouldn’t be an option if I’d already had a pace and ablate. I did talk to my EP in leicester about both options but he’s firmly in the pace and ablate court, maze procedures aren’t in an EP remit and he’s reluctant to refer me to a different hospital for a 2nd opinion. I know that’s not a great deal of help, and I’m sure others on here will be able to give you more educated advice, but I just wanted you to know that I emphasise with your dilemma.
Yes it’s not an easy decision and alway a what if, the more I read the more confused I become, knowledge may be power but sometimes I think gut instinct might be the best option.
You don't have to do what your EP says, its your heart and your life. He is but a qualified consultant advising you according to what he thinks is best for you. If his best for you is at conflict with what you are thinking (due to hearing about mini maze for example) just go and book a private consultation with a thoracic surgeon and get his opinion. It may cost a few hundred pounds for the consultaion but it may also be the best money you ever spend if it reassures you, leads to a right outcome and most importantly you get your life back!
I understand what you mean by “it feels very final”. Knowing the Ablation could not be reversed bothered me but medication made me feel as though I had been hit with a sledge hammer and that feeling was worse. So I went ahead. I was 75 at the time and struggling with daily tachy episodes. I have no regrets.
It’s something I had always thought, ‘it’s there as a last resort’ but then my EP told me he didn’t think it would work for me and that this was his conclusion because of the way my AF presents, (the symptoms I suffer- which I didn’t think were unusual). I hadn’t realised it might not work. So I guess that’s a question you need to ask. Sorry to add another hurdle, but best to know up front especially as there’s no going back. Needless to say I am really disappointed and if my next ablation doesn’t work then I don’t know where I go from there. Please let us know how you get on. Thinking of you and wishing you all the best.
I've already had my own EP and a consultant who specialises in HCM, say that I'm a suitable candidate but it's still just that last jump! I suppose, as others have said, what if something less final comes along in the not too distant future! Thanks for your input and good luck with your treatment, it's such a horrible condition isnt it.
Hi Sue, yes you’re right it is a horrible condition, initially it seems trivial but then you gradually find out all the pitfalls and problems. I have a friend with a much worse condition plus other complex health issues so I constantly tell myself it could be a lot worse! I agree about trying to hang on in case something less final comes along, but, then I wonder just how much damage the drugs are doing. That said I am too scared to ask the question. Its a real conundrum.
Hi Tricia, has your cardiologist rules out a mini maze also? There is a surgeon in Plymouth on the NHS - Malcolm Dalrymple Hay -, perhaps worth asking about if you feel it is something you might want to explore?
Hi Sue, I was going to wait and see how I am after the ablation, but no idea when that will be, so I will definitely look into it. Thank you for the suggestion and info. It’s a bit of a mine field isn’t it! Thanks again.
Having pace and ablate was the best thing I ever did. No more blue light trips to hospital because of crazy a fib. Can’t think of a single downside apart from the fact that I now need a new one as this has been in place for 7 years.
I think this is why, they wanted to delay me having it. I suppose that the older we get the less times we'll need batteries replaced!. How long do they give a battery and is the procedure to change it a difficult one?.
It’s quite a simple thing to replace the battery. Battery life is improving all the time but mine was 12 years and it’s constantly monitored through a mobile device which also records everything and is monitored by my pacemaker clinic. All done under a local anaesthetic and IV painkillers.
I have followed the ‘pace and ablate’ posts for years - one reason why I stay around - and I can only remember a couple of people who weren’t satisfied as opposed to delighted (usual comment) by the result. I looked up hypertrophic cardiomyopathy HCM and see it can cause some nasty arrhythmias. Do you already have a defibrillator pacemaker?
No I dont have a pacemaker, my HCM isnt severe and I hope that it stays that way!. I was on amioderone for 6 years and it kept the AF at bay up until 2 yrs ago and then stopped working.
Now just on Diltiazem but it's not proving very efficient for me, I have already tried bisoprolol and digoxin, both made me feel really unwell.
I've also had a couple of cardio versions.
I'm going to have a better look into the mini maze and use the links that Mummyluv has kindly provided, ahead of my consultation tomorrow
Hi, I am 68 I had a pacemaker implanted last July at LHCH to help control low heart rate due to high dose of medication needed as i was having frequent debilitating fast AF episodes. My AF and flutter got worse and i had a third ablation in February which did not help as they found i had multiple arrythmias. I was told the only option for me as the last resort was AV node ablation and to be totally pacemaker dependant. I had this proceedure done in April.I dont regret the decision as it has improved my life. i can sometimes feel a very slight flutter type sensation but this does not affect me at all. The proceedure is not a cure but manages the severe debilitating symptoms i was having frequently and I am able to make plans that i couldnt before due to the unpredictability of my episodes. Hope this helps xx
Thankyou for your reply. That's the main problem from my point of view as well. It's the not knowing when you're going to feel too bad to go ahead with plans that you have made.Although I'm in permanent AF, no 2 days are the same. Some days, I can manage quite well and then some days I'll have an event planned that I just cant physically get to because I feel so rough.
Would be nice to be able to plan without worrying if I'm going to be ok on the day.
Yes exactly, that was me, my life was on hold a bit even though I still work I have been able to work from home which has helped me to carry on working, now I am starting to get my confidence back to make plans and travel again to see family. Its not an easy decision but I didnt have another option and i am glad I did. But only you know if you think it will be right for you. good luck xx
Hi , I am in US and I was put on Metoprol twice a day for 3 months Dr. added Flecanide twice a day plus metoprol. Next i went into full blown flutter. Had ablation march. Started having blackouts. put in hospital and 3 days later pace maker put in that was in April. Still on drugs and having issue with this stupid pace maker, wish I had never done it. but maybe in about 6 months I will be singing a differ tune. Good luck with you checking out all this information. It is mind blowing
Hi Nannysue - firstly I would read the AFA Factsheet on P&A simply because it may answer many of your questions and prompt some to ask your cardiologist.
Secondly - Please be aware that there are MANY types of Pacemakers which are used for various reasons - so do ask that question and ask which type would be most appropriate for your circumstances. I was recommended to have RST or Resynchronisation Therapy Pacemaker which means both my ventricles are paced, whereas many people only have one ventricle paced which means there is a possibility over time of the ventricles becoming out of sync - leading to Heart Failure - at which point they would then insert a RST pacemaker - my EP was of the opinion - why wait for that to happen. This will be a matter of money unfortunately so my EP had to fight to get the funding for this - RST PM is x3 the cost of standard PM.
Thirdly - Be aware that a Pacemaker may not stop your AF, I was lucky in that it has almost eliminated my AF - I only get AF nowadays if I have an infection.
Fourthly - Although you may still feel AF - P&A should result in a great improvement in quality of life as your pulse will be regular, even though your heart will still not be 100% efficient, you shouldn’t be as symptomatic.
Also ask who will do the surgery and will they close with staples (you do NOT want that as it increases risk of infection). Ensure that they will close with stitches.
Infection is the biggest risk of having the implant and you want someone who is competent for the type of PM - not all the cardiology surgeons are as I learned - the hard way and had to have a revision.
As it happened, once everything was sorted, it was the best thing I ever did and because it worked so well for me, I did not then go ahead with the AV node ablation. Certainly the Pacemaker alone was the magic bullet for me and certainly a much less invasive surgery than mini-maze/hybrid which I think is absolutely the way to go for younger people in persistent AF but it couldn’t be an option for me and it’s not widely available yet in the UK but read MummyLuv’s blogs on that because there she is the expert!
Hope that helps.
PS - I’ll post links to my posts of the time I had the implant.
Thanks for all of this. I'm going to need the rest of the day to get through all of this.! Everyone has been so helpful. Its an actual minefield isnt it. Really glad that things have worked out for you.
Hi Nannysue after having two ablations which didn't work and being in Paroximal AF virtually every day for 18 months and changing my consultant. I eventually found one that said the pace and ablate procedure would be my best option. I had my AV Node ablation three weeks ago and the pacemaker was fitted 10 weeks prior to that. It is like a miracle has happened. As has been said in a previous post, it isn't a cure but it does control the AF and that is what my consultant told me. I am still recovering but actually starting to feel like my old self. I am not struggling to walk anywhere and life is beginning to be a joy again. Luckily I have no underlying heart problems and am only on Apixaban. I am 71 and would certainly recommend the procedure.Good luck I hope you are able to get enough information to help you make a decision.
Hi there and thank you for sharing your enquiry with the members. If you would like further advice or .guidance regarding treatment options and in particular the 'Pace & Ablate' procedure, then please do not hesitate to get in touch with our Patient Services Team at info@afa.org.uk or visit afa.org.uk
Thank you Tracy. Although I've been a member on here for some time now, I dont think I've quite navigated myself fully around the site.I'll definitely look into this. Sue
Hello, after passing out and after two ablations, I still had AF. Mid 2021 decided to have pace and ablate knowing that I would be dependant on the pacemaker. Twelve months on everything is fine, back to golf and no awareness of AF.Best decision I made as no medication other than a blood thinner
A pacemaker is more of an invasive procedure, and if your doc has not already discussed the risks of this, he/should indeed do so. I think the benefits far outweigh the possible risks. Since the pacemaker will steady heart beat, I think it's a good idea. It may be a possibility for me in the near future. Cardiologist has talked about it, but there are other things going on with my heart right now, so he's moved that idea to the back burner. When and if he says it's a good idea to do it, I will.
Greetings from Canada.I have HCM - not real bad - and undergone a number of ablations, cardioversions and don't tolerate the medications they prescribe all that well. Sound familiar?
The plan was to install a CRT-D pacemaker - Cardiac Resynchronization Therapy - Defibrillator. Which was done last Sept 15th. 2021. There are 2 leads instead of the one that most pacemakers have. I have had a number of check-up and they keep fiddling with the timing of the 2 leads to get the best pumping action. The last appointment was June 2 this year. The readjustment has improved my quality of life enough that I'm not sure I want to proceed with the AV Node ablation.
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