Hi,
I need your help again please.
Following consultation I have been offered an ablation.Also invited to take part in study.
1.standard care group who will have a single treatment initially.
2.a repeat study group,who will have the initial treatment followed by a second treatment 8-10 weeks later.
The purpose being to monitor both groups over a 12 month period and to see how many from each group get AF again.C
Well. Good luck. I've had AF for 12 yrs approx. finally 1yr ago last August I had my ablation and drugs reduced , all was well and discharged from treatment in the February after , having been told that I would need the op 2/3times by the royal Brompton. Anyway all was well until last August the anniversary of the op I had AF attack, then again in October and now over Christmas , so my consultant has referred me back for a second one. Pacemakers have been mentioned but some time down the line. Now attacks are controlled by pill in the pocket flecanide A straight hit of 300mg only immediately at the time only no more after that.
No idea what is happening yet for second ablation I await royal Brompton appointment. Good luck with the procedure and future trials
Thank you for your response and wishing you luck also.C
Forestoke- would you please let me know who you had the ablation with at the Brompton and also whether flecanide works well as pill in the pocket?
I have had my first appointment there and offered ablation when symptons worsen
Hi Rosy, I use pill in the pocket Flecainide 100mg with 25 metoprolol. works! Takes a few hours but better than 190 bpm for 10-12 hours. I don't feel good taking anything everyday and feel in increases the frequency of the episodes. Hope this helps. We are all different, I don't think there is a "recipe" we can offer to each other without discussing it with the doctors who have the details behind each of our scenarios. Good luck
thanks Iris..How often do you have AF episodes and does flecanide upset you at all?
I have non stop palpitations, but the rapid AF is only about 2x per month. It is knock out though. I don't know how people deal with it that have it all the time. When I take the flecainide, I don't feel good for a few days afterwards, which is also why I don't take it everyday. The pill in the pocket works for me in that sense. All that said I just got my date for the ablation! Whatever your scenario is, you have all my compassion!
Flacanide works for me also had to stop the Bisoprolol due to extreme tiredness and confusion..at moment 50mg flex at night.
Good luck with the next ablation.c
Hi Carol is this with Derek Todd? I know he does studies like this .but thought there was no patient choice and you got what you were given without option. If given the option I think I would go for no 2. on the basis that few people get results first time anyway.and presumably the patients in group 1 will have to wait a year for repeat if theirs doesn't work,
Bob
Yes Bob,Just re-read patients will be "assigned" to one of the two groups.I am under Dr.Gupta, didn't see him personally although apparently Dr. Gupta will oversee the ablation which itself will be performed by registrars.I didn't make a decision there and then.As quite honestly don't know really what to do.Carry on with meds or ablation.I am just mulling it over at the moment and weighing up all the pros and cons.
Really the choice should be easy especially after attending conference last year and hearing that an early ablation is preferable.Hope you are keeping well.Carol.
Hi, I think I would go for number 2. I'm being treated at Liverpool, but not with either of the Dr's mentioned. I'm 9 weeks PVI and the palps have returned and started to become more frequent, regular and persistent about 2 weeks ago. I got an appointment very quickly for last Wed, the 12th, but am not being seen again for a further 6-8 weeks and am back on the drugs. The Registra, that I saw felt that I would most likely need another op, which of course I was warned about initially, just don't know how long I will have to wait. Also if the beta blocker I've been started on does n't suit, as past ones have n't, I'll have to go back to Amioderone, which of course I don't want.
Hi Carol, I'm facing the same dilemma. I was offered an ablation last Tuesday, but not part of a study. I've been waiting ages to see an EP, but now I've got what I wanted I'm getting cold feet! I wasn't at the HRC but have read the available transcripts so know that sooner is better than later. I'm thinking it over. Do you only take a nighttime dose of Flecanide? Good luck Liz
Hi Liz,same here nearly two years down the line finally got to this stage of EP consultation.
When at the conference in November I was instilled with confidence about the Ablation but sad to say that new found confidence is disappearing fast.My line of thinking is that once the heart has been tampered with there is no going back to it being how it was prior to the procedure.(which at the moment is a relatively healthy heart) touching wood.
The Registrar and myself made a joint decision that I would try the Flecadine as a pill in the pocket to see how I went on.I must say that didn't last long as by Saturday morning having not taken my Friday night dose was back in AF.
Initially at the start of this journey Bisoprolol once a day and Flecadine twice daily however, I was finding it so difficult coping and trying to function daily with the side affects of these drugs that I stopped taking the Bisoprolol two months ago and reduced the Flecadine to one a day as anything was preferable to feeling so horrible all the time.
I have seen a difference whilst still getting the flutters and AF episodes and other symptoms I am coping better without the tiredness.
Liz I will be interested to see what you decide and I wish you luck.Carol x
Hi again, I can't believe I am doing a u turn at present having been so keen, but the EP I saw last Tuesday doesn't feel there is any need to rush and neither do I. I agree with you that there is no going back.
I have been fine on Bisopralol apart from some nights when I can't lie down. Sitting up straight and my heart behaves, lie down and I can get lots of ectopics and some short AF runs. I was blaming the Bisopralol for lowering my heart rate too much and I'm still not convinced otherwise as I believe beta blockers are not the best for vagally mediated AF. The EP wants me to try Flecanide and to go back and see him in 3 months with my decision. He was so pleasant and I came away feeling empowered, my choice and all that, which was great until the cold feet started!
I was interested that you only take a night time dose of Flecanide and thought this might be a good idea for me as my pips and squeaks are always at night, so why take more than I might need? I'll suggest this to my GP and see what his reaction is.
Ages ago I bought a book that SRM grandma suggested called Beat your A-Fib by Steve s. Ryan, which is directed towards the American system, but I've found it very helpful, especially concerning the questions which could be asked about ablation. I think a lot of what is in the book is on his web site. BeatYourA-Fib.com. You might like to check it out for ideas.
Let me know what you decided too and I hope everything settles back down again soon.
Liz
Lizzily beta blockers and digoxin shouldn't be used for vagal AF My EP said only flecanide is suitable- and only if no underlying heart defects.
You sound like me- only Ok if sleeping upright!
I decided to wait untll symptons increase and the balance of risk changes and then go for ablation as . hopefully, that would last for some years!
Hi rosyG, Thanks for replying. Yep, I know all about beta blockers and vagal AF but my EP felt that as I have responded well to Bisopralol apart from at night, then it's best to continue for the time being, introduce 50 mgs of Flecanide x2, and after a couple of weeks to quote him " I can tweak the Bisopralol and see what happens". My Echo was fine and no other problems. I'm having a trial of 3 months then going back to see him to discuss ablation again. It's this sooner rather than later for the best outcome for an ablation that's making me feel pressurised as my symptoms so far are manageable, and will be even better if I can sort out night times. Mind you, I have only just made an appointment to see my GP for the Flecanide as I'm not keen to take it. It's the lions versus the crocodiles as BobD would say! all the best
Liz
SAme situtation, frequency of episodes has gone up and they are rapid. Just been proposed the ablation as well. Excellent EP... I do pill in the pocket method, can't stand the meds everyday.
Hi iris1205, Thanks for your reply. I was so impressed with my EP too, gave me loads of time and I've been lucky as I've been fine on Bisopralol apart from at night. Have 3 months grace to continue thinking it all through. Good luck Liz
Hi,
Having read the notes again l don't think l will have a choice if l decide to go for it but will be allocated.
I am sorry just your AF has returned and l feel for you and fingers crossed you don't have to wait to long for next ablation.It seems to be the case that one treatment is followed by a second and third.l wish you luck.C
If it was me i would opt for 2nd option as stated previous doesnt always work first time . Plus we should help with research and education as much as we can if able to do so. Your decision ultimately and good luck with whatever you decide x
I would take part in a study if one was offered... Not sure such things happen in Wales, but good luck with yours!
Lis
Yes l will take that route if it is an option..l believed l was prepared and knew what questions to ask but l was quite nervous and didn't quite grasp or ask the questions that maybe l should have asked.I shall contact the Hospital this week and speak to the Consultants Secretary.
I had asked my GP before hand what questions should l be asking and he jokingly replied "all the difficult questions that you ask me"
Diolwch yn fawr....Thank you.C
3 1/2 years, first 2x year.... am at 2x a month now - rapid AF 5-12 hours! I found in the beginning if I took the flecainide often, it calmed the rapid part a bit but made it worse as an ongoing feeling - and blurred the lines between AF and palpitations. I only took it daily for about 4-5 days. I don't like the feeling on it at all. I am just getting very tired of the intense episodes and the nonstop palps now. Setting up for the ablation....
Thank you for the information Iris- very helpful to me as , although I may be wrong, as Flecanide is the only possible drug for me, I thought i would wait until my episodes are more frequent and, if they are vigorous like when first diagnosed in August, I will go for ablation.
The EP I saw was great and said I can just ring her secretary when ready!!
Good luck for the 26th!! Please let us know how you get on Iris-
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