After 2nd ablation 8 weeks ago this last week the af has returned everyday and isn't settling.
The arrirhymia nurse called me Monday and we discussed the situation and she then headed of to speak to my EP .
She called me back yesterday to say that my EP feels at 8 weeks I shouldn't be getting AF episodes. He has also said that he won't do a 3rd ablation as my heart has to muxh scarring on it from the first 2 ablations to make any difference!
So he wants me to have pace and ablate !
I am so upset . I'm only 56 and don't want to be pacemaker dependant at my age .
Dont know what way to turn now .
I'm having to send my readings via fibricheck to the hospital eveey say for next 7 days so they can assess the situation
Any advice welcome guys
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Sunnyann
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Hi Sunnyann, I’m so sorry your ablation isn’t keeping those rogue cells at bay. I’m wondering if you’ve been offered a CV to help put you back in NSR while you’re still in blanking period? That’s the route my EP took when I returned to persistent AF after a couple of weeks and it did the trick. 8 weeks does seem a bit soon to be jumping to conclusions.
Secondly, Have you looked into the possibility of mini maze as a future option? In particular the Woolf mini maze? I had my EP looking into this for if my ablation proved unsuccessful. I also had an equity release plan at the ready for if I needed to travel to Japan for the op!
Since joining this forum I have become far less afraid of the prospect of a pacemaker should I ever need one. Many here with pacemakers getting on with their lives quite happily and greatly reduced AF symptoms. So keep an open mind and make sure that EP of yours does so too!
I'm actually in af from.4ish each day till bedtime so cv isn't really an option .I'm just shocked to be honest at 8/9 weeks my ep is talking pace n ablate .
His opinion is I shouldn't be having af everyday at the point .
As u found out only yesterday I'm still in shock but will definitely consider the mini maze .
I feel myself that I must give it another month at least and won't rush into pace n ablate just yet
Something could be triggering it to start at 4 pm. What you are eating at breakfast or lunch or overdoing things throughout the day, low/high blood sugar. So many things to consider but because it’s so regular at the same time, there could be a trigger.
Pace and ablate seems very drastic at your age. I can understand how you are feeling upset.
There is another option that you could look into. That is a mini maze. There are a few surgeons in England who do various versions of it. It is minimally invasive surgery.
A few of us on this forum have had it by Mr Steven Hunter in Sheffield. I am the most recent. Others are enjoying life in NSR, which couldn’t be achieved by catheter ablation. You don’t need to live local to Sheffield, I live in Essex. You could ask your EP or your GP to refer you to Mr Hunter.
Search for mini maze in the box to the right of the screen. There are a lot of posts regarding this.
I was planning my surgery privately in London with Mr Hunter. For various reasons he has stopped doing private work until 2025.
So to answer your question, no he doesn’t practice in London.
There is another surgeon, Mr Paul Modi based in Liverpool. I did enquire and he is just starting private work in London. I don’t know any more than that.
All I can say is that it was well worth the journey to Sheffield. I am a widow, so my daughter and son in law took me and stayed in a hotel while I was in hospital.
I had an email from Paul Modi back in February. His first private clinic in London was only 11 days ago. There is no mention of a hospital in London for surgery.
Yes you can book a private consultation through the Keyhole Heart Clinic in London. Having said that Mr Hunter has been removed from their website, but it may be worth giving them a call. All they seem to be offering currently is ablation.
I had a private consultation using zoom, so only had the one journey to Sheffield.
No just Google his name and make an enquiry on the Liverpool hospital website. I am not sure which method of mini maze he uses. If hybrid or convergent that would also include a catheter ablation . I didn’t research that much, because I had already decided that Mr Hunter was the best man for the job, regardless of location.
Wellnhavw just spoken to Dr hunter secretary at Sheffield and she's taken my details and will speak to him and will contact me regarding a app ...so ball is rolling so to speak
You are very welcome. It is very difficult without our husbands I agree. I was lucky that my daughter and son in law were with me every step of the way. Still very daunting when I came home though.
Mr Hunter is a lovely man and very caring. If he can help you he will. You will need to provide latest ECG’s EKG’s etc.
Michelle has just emailed me his available dates for online consultation! 400 pound !!!!! I thought it would be 250 like normal first time consultation...that's an awful lot of money !!! 😱
That is the normal rate for top cardiothoracic surgeons. What he does is very specialised, that’s why there isn’t many surgeons who do this. Not only is the surgery minimally invasive, he also works on the beating heart, so no by pass.
Fair enough ...i did nearly pass out when I saw the price though 😂 but I see what your saying .It'll be on the phone as didn't fancy travelling from Essex to Sheffield for a half hour consultation
No I didn’t travel to Sheffield for the consultation. It was on line and lasted 45 minutes. Interesting I am in Essex too. If you have the surgery, you are admitted the day before, when all pre op tests will be done. Very effficient.
I did check Basildon Cardiothoracic centre, but they don’t have the expertise for this surgery.
Yes ....exactly . I'm under basildon atm and they are the ones that want me to have the pace and ablate ......whixh I desperately don't want. I may hold off for another month to be through the blanking period before I see Dr hunter I think.
Yes I am a Essex girl too. Who is your EP? I don’t have an EP, just a cardiologist. I didn’t have ablations prior to the mini maze. I met the criteria for the mini maze based on the fact that I just cannot tolerate any of the medication. Also because I have had PAF for 14 years.
A catheter ablation wouldn’t get me off of the medication, whereas the mini maze should get me off all meds, including anticoagulants 3-6 months after the surgery.
My EP is doctor Neil srinivasan...and before him for the first ablation I had Dr tan ......and I to cannot tolerate any meds .. I had every side effect going at the worst level ...even the bloodrhinners....I had to try 3 before I could find one I just about tolerate . I have gastritis so everything ans anything causes me stomaxh problems. So did you have to stay in hospital after the procedure and I've read that they make insitions on your chest? Instead of going up through the groin as with ablation
Yes in hospital for 5 nights after the surgery. I just have two small incisions, probably about half an inch each on each side of the chest under the arm. The difference as opposed to an ablation is that the scars are formed on the outside of the heart. This covers areas of the heart that an ablation can't get to. The recovery is longer than an ablation , but so worth it.
Also the left atrial appendage is clipped. This is where blood pools and forms clots in AF patients. removing the need for anticoagulants. I just can’t wait to be given the go ahead to stop them. I am on Dabigatran at the moment. I have had them all including warfarin.
I too have had gastritis and a gastric ulcer with bleeding caused by Rivaroxaban and have to be careful.
Oh yes .. my gastritis was acute on rivaroxaban I couldn't tolerate them and eventually they changed me to apixaban which for now seems bearable. I do take ppi for gastritis. ..been on them years but I know I need them as they gastritis is so debilating for me .I retesting to hear about the mini maze and your experience. I'm keeping my fingers crossed for you and I may well be following in your footsteps soon .
You couldn't have asked for a better reply than that of Mrsvemb I learned so much I didn't know about from your two way conversations. Good luck whichever path you take
How long are your AF attacks lasting for each day and do you know what your highest heart rate is during them? Do you think it could be something that you're eating for them to return at the same time each day?
Artificial sweeteners and food additives were a sure trigger for my AF attacks. I just wish I'd known that before I had any of my three ablations. My AF returned after all of them. I was then left in constant AF and continued to take a small dose of the beta blocker Metoprolol and Warfarin. My heart eventually settled into a rate I could cope with and it now flits between 60-90bpm constantly. At this rate I feel fine and can do anything I want. I await your response.
Hi ....sometimes they.lasr 2 hours ans rhen other times rhey are all nighters. I've eliminated all triggers from my diet ans I'm well hydrated . My heart rate dosent seem to go higher then 90bpm when I'm in af and I'm no meds apart from apixaban .
I've started sending my fibricheck reports to my ep now and see I shall see what they say .
But I'm not rushing into a pace n ablate ....I will definitely see you blanking period out and wait longer still ans I'm very interested in the mini maze procedure ......so will be looking into that which is less drastic rhen pace n ablate xx
Yes, I think the mini maze may be a good thing. If I needed anything more doing after my 3 ablations I'd probably stick my neck out and go to have the Wolf mini maze in either Houston or Japan.
Not too sure about Mr Hunter in Sheffield. I need to hear more success stories from people who have been to him.
I was told by my EP that I couldn't have any more ablations after my second one failed but did go on to have a third one 6th July 2016 which appears to have really helped. I've had no really fast rate AF since then.
I think you're wise not to rush into having a pacemaker and are looking at other options.
Hello there.I was in the same place as you last year. But being in my late 40s they were very reluctant to pace and ablate. The younger you are, the more reluctant, due to additional complications. And, rightly so.After (what was thought of as) 3 failed ablations we were looking at heart failure meds and rate control meds and try and hold off the pacemaker for a few years. Daunting but realistic plan.
Like you, due to scarring and going back into persistent AF within 48 hours of all ablations, they ruled out another ablation and/ or mini maze.
However... 5 months after 3rd ablation. I was off all heart rate/ rhythm meds in order to switch to heart failure meds and I went from being in high rate persistent AF to normal sinus rhythm. I have stayed that way for a year now, without any medication.
There is little explanation offered by the medics, but I can give you my view.
After 20 years of AF and 3 ablations within a year my heart needed that extended period to recover from the procedures.
I had got, in that period, other health conditions under control. Namely underactive thyroid. And HRT was helping significantly with the menopause. I'd lost some weight and had been taking good care of myself. (Not that I wasn't before, but with the procedures, I was extra good. Pretty much alcohol free for example. Haven't done caffeine for decades. Eat healthily. Exercise regularly, as best I can at any given time).
So I think the combination of these factors helped. Not in isolation, but collectively.
My EF has now gone from 43% to 64% so I no longer need meds for AF or heart failure.
Hence, my advice from my experience (not medically trained) would be to give your heart as much time as possible to heal before rushing into another procedure.
I hope this helps in some way. I completely understand your worry. I was dismayed at facing heart failure and a pace maker at 48 having lived a healthy, active lifestyle. It's very disheartening. And worrying. And, I feel for you.
I am told emphatically by my Cardiologist, EP and GP that the AF WILL return, and I have no doubt I will be back facing these choices again some day. But I would not rush into it. And I am extremely grateful to the EP and cardiologist for persisting with me.
Wishing you all the best. You're not alone in this. 🌸
Just to add that I note your heart rate doesn't get too high. Mine was stuck at 140 persistently hence the damage I think and the impact on quality of life. If they could have got mine down to less than 110 on meds, I would have stuck with that. At least for a few years to hold back the pacemaker route. Intermittent at the rates you are in sounds pretty "good" (i know that's subjective) so I'd definitely not be rushing into pace and ablate unless you , as well as your cardiologist, feel this is the only option. Apologies if I've missed something.
Hi. I'm a bit confused by suggestions about the mini maze as it still involves creating scarring on the outside and inside of the heart.If your EP says there's too much scarring for a further normal ablation, I would have thought that would apply to the maze procedure as well.
Is your Fibricheck telling you it is AFib?A.nd do you get reports from Fibricheck? I am only asking as I am a big fan of Fibricheck but the readings can be scary.At the moment I am getting really scary looking readings but after taking ECG afterwards which just shows arrythmias I sent readings to Arrythmia nurses.The response was Atrial ectopics with pause.They say the only way to treat the ectopics is with very aggressive drugs which cause side effects which can be worse than the ectopics.
As I said having problems for the last month (ablation Feb 23)or so & thought AFib back.Lightheaded,very tired and slightly breathless after exertion,can't take a regular pulse,feeling palps when I go to bed & Fibricheck showing possible irregularities & Emay which is Kardia equivalent showing Arrythmia.But Arrythmia nurse says ectopics.
Do you want to share or swap Fibricheck readings .On here or privately?
Hi I have had af for 20 years I had a pacemaker put in at 51 I'm 64 now I'm in and out of af used to go a couple of years then have an episode but just lately I've had 2 episodes in the last 8 weeks so my pill in the pocket flecanide I have to take 50 mg twice a day until I have an ablation in the next year. I must admit having the pacemaker has helped over the years but it was put in for bradycardia when my heart was going to slow. So my heart cannot go below 60 beats a minute it used to be 38 so when I had an af episode years ago it was worse. I usually deal with these episodes at home have to take 200mg flecanide all at once to cardiovert me from the inside now the cardiologist wants me to take them every day 50mg twice daily until I have an ablation but I've heard that sometimes ablation doesn't work.
I’ve read that a few took Flecainide for some time before and after ablation to help the heart get used to NSR. I’m trying that post CV and so far nearly 3 months and going well
Sunnyann, may I suggest you get a second opinion. After problems with my first ablation with a-fib coming back repeatedly despite a short-term success with cardioversion, my EP told me I had sick sinus syndrome and that pace-and-ablate was an option. Well I disagreed and got a new EP -- who vehemently disagreed with my first EP, and thank goodness for that. It's worth considering taking a step back before you make a decision. Best of luck to you.
Yes I totally agree ...I'm not even through the blanking period yet so I'm.going tonwait till I'm.6 months postnablarion before I make a decision but I'm definitely going to get a 2nd opinion
I'm so glad you're considering that. I had numerous a-fib episodes during the blanking period for all my ablations (but especially that first one); in fact, a few just past the 3-month period. As Bob said, the blanking period isn't set in stone that your heart's supposedly completely healed at that 3-month point.
Did you have Cryo or RF ablation? If just Cryo they are only doing the PV areas and you may have more areas requiring ablation. If RF, the skill of the EP is significantly more important to do it properly and thoroughly.
As someone else mentioned, has your EP suggested Flecainide or some other AAD to calm your heart post ablation? This may keep you in NSR and allow your heart to accommodate. Can you ask your EP about a Rhythm med?
Can you seek out another opinion? As others have mentioned, minimaze is also an option if done in the hands of the right doctor.
I had RF ablation this time ans was taken off verapamil a few weeks ago because my blood pressure was very low and my EP felt it may be the verapamil causing it .Annoyingly I can't tolerate flecanide. It makes me feel dreadful .
But I won't be rushing into pace and ablate for sure .....I just at this time think its definitely not right for me .
And once I'm through the blanking period and heading towards 6 months post ablation I will seek a 2nd opinion
Verapamil is a Calcium Channel Blocker (used for rate control and blood pressure) and not an AAD (like Flecainide). There are other AAD (Antiarrhythmic Drug) meds out there also (Multaq, Sotalol, Amiodarone, etc.). Some need a hospital trial to start administration and some have concerning side effects if taken in high doses. You could inquire with your EP or new EP what if anything may make sense to get you in NSR and keep your heart calm for a while.
If you do eventually need to investigate the Wolf minimaze (or similar) further in deciding your next best option, I have to recommend you read the illustrated Posts and Replies of saulger , who travelled to Tokyo from Greece to undergo a similar procedure with Dr Ohtsuka, a colleague of the inventor of the minimaze Dr Wolf. Lots of helpful information about the procedure to digest. Here's a link to his Posts ...
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Persistent AF - Success of Ablation?
