I had my AV node ablation yesterday and wanted to say thanks for the support on here from others who've been through it.
The procedure went without hitch. It took less than a minute to ablate the node and then there was a wait while they do the pacemaker tests and make sure they've got all the cells ablated. I didn't feel a thing. Not much sedation needed apparently for such a short procedure. I've not had any bleeding in my groin. Back to the ward within an hour then laying flat 2for hrs then sitting 2for hrs then ambulatory for an hour then home. Bish bash bosh! And now the luxury of a regular heartbeat.
I wanted to share my experience because I was so frightened beforehand. I hope this can give a positive perspective because you read about a lot of the problems on the internet.
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Tototcx
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Jolly well done! It really does seem like a miracle doesn't it. Just take good care with your recovery as I found that it really has taken me about two months to start feeling able to participate in normal life.
I'm glad you saw my post because you've been so helpful. I feel tired today but I'm taking it easy for a while. Just have to wait and see how I recover I guess. But I want to go back to work soon and of course I have a 1year old to look after! My sister is going to help though initially.
I am so pleased that I have been helpful. Keep in touch and let me know how your recovery goes but remember to take it easy! Gloria
Wonderful to hear you have had such a positive experience! You may find our info sheet on Recovering from Ablation useful: heartrhythmalliance.org/afa...
If you have any questions, or would like any support or guidance as you recover please feel free to contact our Patient Services Team info@afa.org.uk
Thanks so much for your reply and the info. Actually that's really useful because I didn't get any written advice about recovery although they told me a lot on the ward. But I was so full of adrenaline and sedation I can't remember any of it apart from stop the amiodarone..(.hurray! ) X
Well done to you for going through this ! I hope I may have avoided it but not necessarily having had ablation no 4 a year ago ( but still holding on). I had so many medics in hospital suggest it to me but my EP wanted to give it another go.
Hello, so happy that it’s gone so well. Mine AV node ablation was done in Dec and I still sometimes find it hard to believe that I can walk up the stairs without being breathless and bend down without dizziness. Please take it easy and give your body time, then enjoy every minute of your new life.
So glad to hear you are doing well! Does this mean you are pacemaker dependant now? I am on the waiting list for an ablation, however, I’m not sure if the pacemaker would be the better option for me. My uncle has had 3 ablation’s and still not out of AF. My cardiologist said he could do a pace & ablate, but that would mean my heart is solely dependent on the pacemaker, or he can fit a pacemaker and just double my meds. The problem is, I am going into AF about 2-3 times a week, but when In sinus rhythm, my HR is dropping to 43-56 so it’s too low to give me any other permanent meds. My mother was offered a pacemaker in her 50’s which she declined. My cardiologist is sending me all the literature on both ablation/pacemaker’s. Pacemaker will not cure my AF, but it will make it safer to take more meds. Good luck 🤞 xx
I think I was offered the pacemaker because I'd hit a brick wall in terms of medication and I'm too high risk for a PVI ablation so I really had no options left to me. Flecainide stopped working and I can't breathe or walk anywhere with beta blockers for rate control. So I was put on amiodarone but you can't stay on that for long so pace and ablate it was. I wasn't happy about being totally pacemaker dependent but it's all about Risk and Benefit isn't it really. My AF was coming almost weekly before the amiodarone and I used to get a really fast ventricular response...130-180 variable which wouldn't revert to NSR with any rate control drugs. I'd be in A&E for 12 hours at a time with constant monitoring and it's so very frightening and really horrible... it's not really the tachycardia that frightened me but the irregularity. It's really awful. I had no quality of life either. Couldn't work for fear of it happening there. So you can see I'd nowhere else to go with it. Just keep talking to your cardiologist. That's their realm of expertise and they really know a lot!
So far, being totally pacemaker dependent feels quite good actually. No fear of fast AF hanging over me!
Me too had my AV node ablation in April and although sometimes feel the flutter my heart rate stays consistent. But having problems with BP meds which is a annoying after having the AV done.
I was wondering if I'd still feel the AF and what it actually felt like cos I had only got the fast response. It's a shame for you re BP meds . There's a lot of hypertension meds so I'm sure they'll find one that suits you x
I have seen a Dr today and changing my meds for Bp. When I say i can feel the AF/Flutter its nothing like before and i does not impact on my life at all, like it use to. I am so glad I had it done I can make plans with confidence and not have to cancel, because I was back in Resus for the umpteenth time.
I'm so glad you've got new drugs. At least you have a chance of a new normal! Yes it'll be good to get confidence back about so many things. It'd be even better if covid would disappear too lol
That’s amazing! So pleased for you! When my AF hits it is also the same rate. At times it’s reached 220! After a rest and double the Flecainide, sometimes triple, I do come out of it. I think I will have to weigh up the best options. My cardiologist seemed to prefer the ablation first, it’s just I read so many successful pacemaker stories. Good luck again and thank you for your reply xx
If I'd been able to get the PVI ablation I'd definitely have tried it first..even though some don't work don't underestimate the ones that do. But I was too high risk for the PVI. Cest la vie! Good luck
I have been in permanent AF since last December and a couple months ago became extremely symptomatic with shortness of breath and fluid build up. I recently had a pacemaker put in a week and a half ago. The plan is to have the AV node ablation the first week of September as long as their isn't a reaction to the silicone 🤞 that coats the device and leads. So far so good! I was resistant to the AV Node ablation because of the permanency of it , now I feel I have no choose if I want to have quality of life. It is good to hear you had a positive experience and are doing well.
I get the feeling from reading around, that most people are a bit nervous about becoming "pacemaker dependent". Its only natural I guess. I was. But as you say, its a last resort and QOL is everything. I'm now 33 days post av node ablation and the actual procedure was easy peasy! I'm now getting used to it. Sometimes I totally forget that I'm pacemaker dependent and have no inkling its all happening in the background and then sometimes I'm very aware of my heartbeat. I'm told that this goes away with time as it all becomes normal. The fact that its totally steady and will never waver from this beat is quite nice actually. My own heart biology was letting me down so something mechanical/electrical is better tbh and I've also been told that they never really go wrong so I've got to work on building my own trust in it and that takes time. I'm not sure how it'll feel when I go into AF again yet. I had paroxysmal AF . I cannot imagine having permanent. Absolutely horrible. I;m sure you will feel immediate relief! Good luck !
Knowing that an AV node ablation is not reversible does make it scary to most of us. It has been extremely helpful finding discussion on the topic to help allay fears and provide an understanding of how others with a-fib felt before and after the procedure. Being in permanent a-fib is absolutely horrible yet when the medicines stop helping we tolerate it until our quality of life is significantly reduced mainly to avert becoming pacemaker dependent. We will still be in a-fib (even if it doesn't affect our quality of life) and pacemaker dependent. I am glad I made the decision to schedule the AV node ablation and look forward to increasing my activities and improving the quality of my life.
This is really good to read for me. I'm on the list for this. Having taken amioderone for 6yrs, with no problems, it stopped working 2yrs ago and since then I've been in permanent AF. Like you, the ablation only route isnt deemed appropriate for me, with only a 30% chance of being successful. My AF is currently being "controlled " with a mixture of Diltiazem and Digoxin but , although bearable, it's all over the place and I flip from it being "ok" to feeling awful. I'm feeling quite nervous of being pacemaker dependent but like you, think I've reached that stage to just be able to get on with my life without all of the symptoms you've described. Dizzy when bending, heart racing, breathlessness etc. Think Im going to go for it but my knees are knocking together. Pleased to hear it's gone well for you.
It's not an easy decision to become pacemaker dependent but when the benefits start outweighing the risks you sort of have nowhere else to go! I never progressed to permanent AF so only paroxysmal but the fear of it happening was horrible and when I ended up in A&E 6 times over last Xmas it became obvious they needed to do it. Amiodarone has worked for 6months but they won't prescribe for longer for me. I'm only Day 2 post ablation. I can't feel the pacing at all but I'm constantly checking my heart rate I guess that will change. There is definitely a confidence coming that the AF symptoms will never come back. The pacemaker can't be any worse than my own dicky heart! X
Thank you so much for posting this. I see my EP next Tuesday on the very same matter. I’ve worked my way through Nebivolol, Digoxinand 300 Flecainide a day but nothing is working and episodes are now every other day.
I'm glad it helps. Every other day AF episodes would be horrible. I was truly a very frightened pace and ablate patient. The pacemaker is a longer procedure and it's healed so well but the AV node ablation was an absolute doddle lol. I have to confess that I was excruciatingly worried but they were all so empathetic and supportive. Honestly,, it was far easier than blooming root canal treatment!! 😁 Good luck. Xx
I'm so glad everything turned out well for you. It was once thought by my previous EP that I would need the procedure, later found that I didn't, but it's good to know it was such an easy one for you, if I ever need it in the future. Well done!
Great stuff I'm really pleased for you. I have been told that pace and ablate, Amiodarone or do nothing are my options. Pace and ablate is sounding a lot less daunting after your post.
I'm glad it has helped you. I was more worried about the actual procedure than what came next and the ablation was nowhere near as bad as my fears. I think my next hurdle is learning to live with it and confidence is time related. I can't feel it pacing at all and I thought I would but I truly can't. It's early days but for the first time in 7 years I am free of the worry of getting fast AF again. I truly hated it. And now I'm pacemaker dependent. It's a scary thought when it pops into my thoughts but the reality is that my heart actually feels calm. Far fewer ectopics too. I feel hopeful again.
Hi, I've just read your post after being away from this group for a few years while living abroad.
How are you getting on after two months? When I eventually get a cardiology appointment I'd like to ask about pace and ablate, because I have no quality of life now. I need some hope that there is a treatment that may help me live a normal life.
hi there. Its been a bit up and down. Getting the settings right for me is proving to be trickier than I expected. It's much more complicated than I thought. But I'm getting there. X
When you say complicated, what do you mean exactly, please? I've been in permanent AF for two years now, and pretty incapacitated with it, after 10 years of intermittent but increasingly longer episodes and palpitations since childhood. My consultant is recommending pace and ablate but it's very difficult to find out beforehand what it will be like afterwards. I don't mind if I'm similar or a little improved to now if I know in advance. After three ablations and numerous cardioversions I was always told I could get back to swimming, cycling, etc but it never happened and I don't need the disappointment again.
I'd recommend looking for info on the Pacemaker Club online. There's a wealth of resources on this forum.
My current problem is that I'm not permanent, only paroxysmal AF so I have a mode switch which changes the settings when I go into AF. This is something that I have had to get used to...it feels wierd...and also I have a Rate Response setting which increases your heart rate when it senses an increase in movement. Sounds good but atm mine is set a bit too sensitive so my heart pounds at stupid times for example when I wash my hair! My cardiologist says its trial and error getting the settings right. I think if I were in permanent AF anything would be better tbh. At this point, its about Quality of Life.
The other thing I didn't know beforehand was that there are different types of pacemaker. I have a CRT-P type and there are others which just pace the ventricles. It's been a bit of a steep learning curve tbh but I like to know everything! Lol. Good luck x
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