I had my ablation on 25th March and just wanted to share how I’ve found the recovery so far.
In a word it’s been hard, both physically and mentally. Despite trying to keep my expectations low I think I expected too much from the ablation and from my body during recovery. Of course everyone is different and this has just been my experience.
My EP declared me virtually cured(90%) during the ablation and sent me home full of tentative hope. Unfortunately within 48 hours I was back in SVT, the episode lasted 4 hours and had much lower rates than I’m used to and didn’t descend into AFIB which hasn’t happened for over 12 years. (SVT is my trigger for Afib) so something had been altered by the ablation for sure but suddenly the hope of cure felt like it slipped away. Everyone reassured me it was a normal part of recovery and to rest and be patient and then I spoke with the EP and he assured me it wasn’t. I went on to have lots of little runs of SVT and started having ectopics too which was a new thing for me. I felt totally confused, an arrhythmia nurse said an SVT ablation is quick and easy to recover from and I should be fully back to normal by now, It was 8 days after the procedure. I didn’t feel well at all, my heart seemed very sensitive and worse than before. I rested to the point of ridiculousness but by the second week after another run of SVT I felt like I would never feel better and was regretting having the ablation.
My hospital lent me a Kardia that I can keep for 6 months so that I can catch the SVT the next time it happens, that has given me some comfort, knowing if it is still lingering at least I can catch it and make a plan with my EP.
At the end of the second week I decided that my heart would be well on its way to being healed and I felt like I should try and transition from rest to recovering. I have tried to do a bit more each day and gently push myself, my heart is incredibly sensitive and I’m getting used to the new way it reacts to things and trying not to be scared. I have had some really good days in the last week that have made me feel like there is light at the end of the tunnel but just when I feel like I’m turning a corner I can have a bad day with my heart just feeling off.
So that’s where I’m up to, I wish I was able to say I rested and then went back to normal feeling great but that’s not happening yet. I’m not sure if things will get better from here or if this is my new normal.
One of the hardest parts of the ablation for me has been just not knowing if it is truly gone, the 4 hour episode so soon afterwards really rocked me. I don’t know where I’m headed in terms of recovery, I don’t know if I’ve reached it yet or I’m still recovering. I’m trying to hold my nerve and stay positive. I’m trying to get used to my heart reacting in new ways without being scared. I’m trying not to feel disappointed.
So this is where I’m up to, sorry it’s not more positive but it really is still early days and I’ve had some really good days.
Onwards and upwards as they like to say around here 😊
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Kellyjelly
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Ive not had an ablation( yet anyway) so cannot speak from experience. I have read lots of others reports of rocky road for a few months until the heart settles. Be hopeful as you are in the early days. If it is ok with you, I will pray for your recovery and that things settle down soon. 💜
This is one of the many reasons why we compiled the fact sheet on recovery. Doctors just DO NOT understand what it is like. Think of your groin wound. If that is still showing bruises then what about your poor heart. I was past my second ablation before I learned about the three month "blanking period"! I too expected to be dancing out of the ward next day and another reason why I have spent the last eleven years warning people on this and a previous forum and trying to assure them that this is quite normal. It would have been so easy just to go away and enjoy my finally better life.
Even when we produced the fact sheet some doctors expressed surprise at some things like for example the migraine aura which few even knew happened.
At least you know now and will be better prepared for any new oddities as they come along during the next three to six months.
Thank you BobD, I have read the fact sheet so many times and clung to it when I’ve felt really awful. It has been so helpful. Although after the nurse told me that an SVT (AVNRT)ablation is different from an AFib ablation and doesn’t have a blanking period and is very easy to recover from I felt that maybe the factsheet didn’t apply to me.
I think that what I have learned from this is that you just have to hold your nerve and listen to your own body and read the factsheet!
Hi Kelly Jelly you had a really tough time anyway so being told you should be up and running after a week or so is crazy. It’s like the other lady says your heart has been messed with so it needs time to heal. My ablation went well in 2013 it lasted for 3 years then I had the most awful year of my life and I went back into AF with a vengeance. I was quite well at first but my oh my I new I had had it done. So you must rest rest and more rest. Your body will tell you when you have done too much and please watch the exercising. You have a good day. Xx
Hi just read your reply and you mention migraine aura? I had my abulation 3 weeks ago and same as Kelly shocked at recovery first two weeks completely wiped out and felt strange third week more like myself but I have had the strangest funny flashing lights ocassionally when its seems concentrating with I also have slight headache I have never had this before is this something related to procedure? Sue
Yes of course it is. It is caused by the transeptal puncture when they move from the right to the left atrium. Another thing we mention in our fact sheet.
When I had this experience of the migraine aura, no-one had told me it could happen. I thought I was having a stroke and called an ambulance. The crew did not pick up on this as a possibility even though I had told them I had just had an ablation. When it passed, I was told to go the the GP who had no ideas either. It was only when I called the arrhythmia nurses on the Monday morning who said 'Oh yes, that can happen'. I don't think I have ever read your factsheet - where do you find it?
I can't remember who said it on the forum but I recall someone once saying that it would be good if EPs could wear a vest for a few hours which gave them af and then they would really know what it was like.
As helpful and kind as they are in the main unless they have had a session of af or svt or any other arrhythmia it's hard to understand how bad it can be. I sadly find they give unrealistic time frames of getting back to normal post procedure and then as patients we are scared ridgid when we have symptoms we aren't expecting.
The reality is our hearts have been scarred by ablation and need time to recover, heal and forgive us for the onslaught they have been through. Things will improve its early days.
It's lovely to hear from you Kelly. I've been waiting for the update on how you were progressing after your ablation.
I know it's a boring thing to say, but it's still early days for you and as Bob has said, you need to give it at least 3 months for your heart to heal and form the scarring that blocks those awful rogue beats. However, that doesn't mean to say that you can't report how you're feeling each week on the forum. It will help make others, who are awaiting ablations, aware that recovery is hardly ever quick.
You'll probably be dancing in the light at the end of tunnel in a month or so.
I know you are right but I just felt so confused when I was recovering because the arrhythmia nurse made a big distinction between AFib and svt ablations. I thought an ablation was an ablation and after reading everything here I initially expected things to potentially take a few months to settle down but the arrhythmia nurse was adamant that SVT ablation was easy to get over, It completely threw me.
I’m now just trying so hard to accept that I must just listen to my body and try and be patient.
I'm so sorry it hasn't been an easy recovery. It is early days but I also understand that it is confusing that EP expects you to be better and not having SVT. Have you managed to capture it with the Kardia? How long before you see your EP again?
That's good news really. You could have your phone ready and wait for the moment but I don't think that is healthy mentally. Do you have anything interesting but not too physical to do? I had my ablation for AF and flutter 10 days before Christmas so I had plenty of distraction! I looked at my Kardia notes yesterday but there aren't many tracings. I did develop an awful cough after Christmas which was not surprising as I had family staying at Christmas and New year - not advised but it took mind off my heart. If I had another one at a more convenient time I'd plan something beforehand, preferably watching the Olympics......
Thank you for your kind reply 😊 I’ve hardly touched the Kardia since I got it, I definitely couldn’t sit waiting with phone in hand to catch it, like you say that’s not good for you. I am actually really busy, I’ve been planting seeds in my polytunnel today, very gentle and relaxing in the lovely warm sunshine. 🌞
My understanding is it takes a little time for an ablation to settle down. Three months seems to the mooted period. It sounds though like it is already helping things a little.
I think it`s best not to have any expectations for any treatment for a-fib. That way you won`t be disappointed if it doesn`t work. My next CV is in May - I expect nothing from it - that way I won`t be disappointed if I go back to sinus the next day. However I`ll be delighted if it works.
Thank you Paul 😊 I totally convinced myself before my ablation that I had no expectations so that if it didn’t work I wouldn’t be disappointed. All very good in theory but the reality has been difficult to deal with. I hope that over the next few weeks I will feel better. After reading what everyone had said I’m definitely trying to be more patient.
Best of luck with your CV, I hope so much that it works for you. 🤞
Hi Kelly, it’s good to hear from you about your recovery. I had my ablation for SVT two days after yours and it’s been tough. I keep thinking I’m recovering well and try to do a little more but then I’m absolutely exhausted the following day. I spent 4 hours in hospital on Tuesday as they suspected I had a blood clot due to my breathlessness and sharp pains in my chest. An x-ray and blood tests didn’t show any clots fortunately, I was given painkillers and told to rest more.
As you’ve said before... we have to give our hearts the best chance to heal.
Thank you so much Lola555, I’m so grateful that you have shared that with me. Knowing that you have had the same type of ablation and that you are finding it tough of course makes me sad but also makes me feel reassured.
I’m so sorry to hear that you have been in hospital, that must have been very frightening. I’m happy everything checked out ok.
You are absolutely right, I need to be much more patient than I am.
Take really good care and hoping you feel better soon. X
I too had doubts on recovery after the experts said I would be as new in a week. Like you I had an EP study which resulted in an ablation for SVT but the Doc said that I still have MAT which will be treated with Meds. Even though the SVT ablation is not as prolific as a typical AF ablation it does typically have longer and deeper burns that can take just as long to heal, maybe occasionally longer? Looking back on my recovery so far, I see now (not at the time) that whilst I had doubts, recovery was and is improving, yes not going the right way every day and yes being worst some days before improving. It seems to me that your recovery is very similar. I can say that keeping an eye on my heart rate and BP did make me change my meds from initially being on Bisoprolol 2.5 and Digoxin 25 to being on nothing for a few weeks and now just on Bisoprolol 1.25 both rate and BP have levelled out and doing more activity. But I am not as good as new yet, still cannot do too much, still get the odd ectopic still get a 2 or 3 second run of fast rate (not sure if it's SVT but probably is). Taking too much or the wrong meds for you condition can make the arythmia worst or change it (Flecainide made my arythmia go into flutter) so I am pleased with being able to adjust my meds (within reason) according to my recovery and think this has helped. I would be interested to hear what the EP told you. Keep up your good spirits, I know it's hard but you do appear to be going in the right direction.
Your updates on your ablation have been so helpful and it’s really good to read your reflections on your recovery. If I think back to day 1 and how I felt to how I feel now I am actually so much better. I remember reading one of your updates and you were feeling like things were going rather slowly, I’m possibly in the same place, I need to have more patience.
It’s interesting to know that the burns are often deeper and the healing takes just as long. From the replies on this thread from other people that have had an SVT ablation it seems like the recovery process has been very similar for all of us.
I’m pleased that you are feeling better and really hope that you continue to feel stronger over the coming weeks. In terms of medication I’m still not taking anything, I can take flecainide as a pip if I have another sustained episode. I have been really tempted on the bad data to take it to get some peace from all the thumps and bumps but I’ve resisted.
The EP said that he was very disappointed for me that I had a 4 hour episode of SVT so soon after the ablation, he said that it wasn’t an expected part of recovery from the procedure. He arranged a Kardia and said it was really important that I record it if it happens again. He didn’t seem overly concerned, just disappointed. I haven’t spoken to him since the second day after the ablation, I figured that he will only really be interested if something sustained happens. I can talk it all over with him at my follow up appointment.
It sounds really good that your EP does not believe you need any medication. I am of the opinion the the EP's are not necessarily the best people to know how recovery can go. My EP said I would be good as new in a week, then when I had a 4 hr arythmia (around 3 days after the ablation) I was ambulanced to A&E, only to be told by my Cardiologist (not the same person as my EP) and my GP that this was to be expected and to come off my medication. Certainly my recovery is very much more in line with the fact sheet than the EP's prediction. I would continue just as you are, slowly, but slowly recovering, perhaps keep a check on your pulse rate and BP, if they start to increase (as mine did at around 5 weeks) I would talk to your Doc to see if they recommend medication.
It's tough going isn't it? I empathise with your physical and emotional ablation after effects. I am 4 weeks post ablation now and I do feel better but my naughty heart keeps on doing it's own thing, having a right little tap dance when it feels like it. I am doing better emotionally when that happens but boy, it would be lovely if it just settled down altogether! Anyway, I just wanted to say, I that hope things improve for you and that you're doing really well coping with all those horrible symptoms. It's a lot to deal with, so be kind to yourself and don't overdo things x
Hey there KJ. You have been given great advice and encouragement in the replies above, which is why this forum is so good. Great and honest people. After my ablation my heart was kicking and bucking around for a few weeks before starting to settle down some. I was sooooo discouraged during those episodes and thought I had made a big mistake having the ablation. It took all of three months and then some for my heart to be ready for my flecainide to be removed. I am two weeks into that and have had some more kicking and bucking and some longer lasting episodes (3-4 hours) since. Mine seem to be brought on by sudden exertion or stress but most usually clear fairly fast (10-20 minutes). I had been on flecainide for almost 10 years! My body is still adjusting and I am hoping that in time I can also get off of the beta blocker. With all the bumps along the way I must say it is fairly exciting to spend most of my hours and days in sinus rhythm with no flecainide coursing through my veins! Hang in there and give it more time - I think it will be quite a while before you know the whole result of your ablation. Wishing you the very best!
It’s so funny that you mention the flecainide. I was on flecainide for 12 years and stopped it a few weeks before my ablation and haven’t taken it since(EPs instructions) it just occurred to me yesterday that the flecainide May have been suppressing so much more than just the SVT and AFIB, and some of what I’m feeling is just my heart when it’s left to its own devices. Add the ablation to the mix and it’s no wonder things are a bit bumpy.
I wish you all the best and long may that NSR continue 😊
That’s also what suddenly crossed my mind when I read the reply of Jafib. True you did take medication a lot of years. So it can perhaps be possible that you don’t know your “true” heart anymore, because the medication is giving a false feeling of how your heart is behaving when “naked”. You also had it a long time, 30 years and you had the svt that was setting off the Afib, so it was a little complicated.
The nurse said that svt has no blank period like Afib. But even if this is true (if I think of it logically, they also burned in your heart, so what is the difference, where did she get this information, did your EP backup her story of this no-blanking period? Perhaps you should ask him?), your heart has to adjust no?
I see it more as domino stones. You got of the meds, they then fixed your svt. This 2 events alone already have set your domino stones to roll and your heart is perhaps coping with all this new elements?
I’m not a doctor, far from, just a theory popping out this minute...
Does it make any sense to you what I’m babbling about 🤨😜?
You have put it way better than I did Anna! That’s exactly what I was trying to say. Maybe this is how my heart is but it’s just been masked by the flecainide. I love the analogy of my naked heart, my poor heart must really not know what’s hit it!
I will talk it over properly with the EP when I see him in 6 weeks. I have no idea where the nurse got this from and later a different nurse said she wasn’t sure when I told her what the first nurse said.
Your reply made perfect sense, not babbling at all!
Sorry to hear you’re not having the recovery time you’d hoped for, 3 weeks post ablation. I know they say 3 months but it’s only human to hope that it may go better than that. Keep on doing your lighter tasks in the garden- a perfect therapy.
Thinking of you 😘
I will be posting an update on my 6 week post ablation soon.
If it helps my heart did all sorts post ablation inc A Fib A flutter. Finally 2 months after the op it is beginning to settle.down with only 1 episode of A Fib since the 23rd March.
I have been proposed for an ablation; one of the things which I anticipate will be very stressful is exactly what you describe- the uncertainty and symptoms *after* the procedure. However, disconcerting your symptoms are I think you have to remind yourself again and again that the heart is still inflamed and that medical opinion is unanimous that you need to wait for theee months to get a clear picture of the situation.
“Many people experience some atrial fibrillation or atrial flutter following a catheter ablation due to inflammation of the heart tissue. For this reason, the first three months are generally considered a "blanking period" in which success or failure should not be judged.
Some folks have said that their afib following catheter ablation was as bad as before, or worse. That is due to the inflammation, and the arrhythmia is often different from that experienced previously. As the body heals and the inflammation resolves, the afib and atrial flutter generally go away.”
I had an ablation for SVT and was told by an arrhythmia nurse that this type of ablation doesn’t have a blanking period and recovery is quick and easy. Thanks to the lovely people here who have had SVT ablations too I now feel reassured that the information she gave me was not necessarily correct.
It just goes to show the power of words, her statement regarding the type of ablation I gad undid all the hard work and preparation I had done leading up to my ablation. I felt like I had been through a lesser ordeal than the majority of people here who have been through an ablation for AFib. I wondered if the atrial fibrillation factsheet was applicable with an SVT ablation. It really undermined my recovery.
However one post here and connecting with people that have had the same ablation and have felt the same as me has given me so much reassurance 😊
It does seem odd that the nurse would say that there is no blanking period for SVT ablations as they, like AF ablations, involve pushing catheters into the heart and, hence, I would have thought, also inflaming it. You could speak to one of the cardiac nurses at the BHF helpline for clarification on: 0300 330 3311. They are very knowledgeable and might be able to reassure you about post-ablation symptoms too.
Thank you for your help, I actually might give them a ring. 😊
Up until the arrhythmia nurse said that to me I made no distinction between an SVT and AFib ablation. I understood that some ablations are of course far more complex than mine and definitely would require a longer recovery but I just figured that the procedure was the same.
Kelly, you have been through so much in your journey with SVT and Afib, and I am really sorry that you are one of the ones who didn't have an instant improvement (and there are some). But listen to all the replies, many have been through what you are going through now and improved over the weeks and months that followed. And best of all, you seem to have a really empathetic EP who will be looking out for you. Everyone is thinking of you.
I’m so glad I posted, it is so reassuring to read that other people have felt like me after the SVT ablation. My EP is really lovely, I am lucky I think he will do everything he can to help me if it doesn’t settle down.
Kelly, I had my ablation a week before you if you remember. I was taken off Bisoprolol immediately but told to take one when I felt I needed it. That has been 50% of the time since the op, some days good some like this morning not so, have had etopics all morning. They also warned me that I could have an episode of SVT in the first month or so. Remember its the scar tissue we need to form to block the signals, this can take up to 3 months. They did say to me 95% sure they got it all but if I needed to have a 2nd it would be a much less onerous and quicker procedure.
Thank you so much, I do remember 😊 sounds like my recovery is very similar to yours. I’ve never had ectopics before the ablation , they are really horrible. I’m sorry you are having lots of them and I hope they settle down soon.
It looks like you were given more realistic advice on what to expect during recovery, it’s so reassuring to me that you say they told you that you might have an SVT episode in the first month. How I wish the advice was standardised, it’s so difficult to hold your nerve when you feel like this and you have been told you will be in great shape after a week.
I hope so much that you won’t need another procedure and that you continue to recover well.
I’m so sorry you’re feeling like this. I hope you recover quickly. I had my ablation for svt in February. It really isn’t a simple recovery. I think your nurse knows nothing and is reading out of a text book!! The first week of my ablation I struggled to get off the sofa. The second week I managed to do small things. The third week I was still in lots of pain and out of breath with racing heartbeats on such little movement. The hospital called (courtesy call apparently) to see how I was. I explained how I was feeling and she asked me if I knew the echo following my ablation showed I had fluid around my heart? Erm no....was rushed in for emergency scan, ecg and bloods....fluid was still the same so apparently that was good news. Ecg showed abnormal st and t wave (apparently that’s ok). Was sent home. Had four weeks off work, went back on reduced hours. Back to full hours now. Still have pain. Had a run of svt yesterday (only five or so seconds) followed by intermittent chest pains all day. I feel ok but it isn’t easy, so please take care of yourself and if you’re concerned, pester the hospital or gp. Listen to your body and just take total care of yourself. I hope you get better soon x
Thank you so much for your kind and helpful reply. 😊
It must have been really scary to find out that you had fluid around your heart, no wonder you were struggling with breathlessness and pain you poor thing. I’m glad it is settling down bit by bit.
Your story has given me a new perspective, to know that you are still having the odd run of SVT has really highlighted to me that I am at the very beginning of the healing process, I need to be much more patient.
I’m wishing you the all the best and hope you feel better every day.
Tough going by the sound of it Kelly, hang in there and I think others are right from what I've read, it's a long road and first three months expect ups and downs x
Hi Kelly - sorry to hear that you are not as well as you had hoped to be post ablation. It is so disappointing to be having problems now. It is emotionally draining to go through ablations, with all the expectation of healing this horrible condition . I went into one ablation for AF perfectly okay that day and came out of surgery with a horrible AF episode which lasted 12 hours. But these conditions of our heart are like trying to grab slippery jelly, they often change and can suddenly settle down. So I do pray that you will find the ablation has helped and if it does not settle, then I hope the EP can soon have another look at you. xx
Oh dear so sorry to hear all that , just keep sharing your thoughts , a problem shared is a problem halved! Keep on touch with the EP that did the ablation , surely he should give you some answers as to why you are feeling this way It’s not nice , I’m as you know hoping to have an ablation in the near future and this does not bode well , so I will be asking my EP a lot of questions, I am getting plenty of ectopics at the moment and they are not pleasant at all , making me miserable ! Now resorting to small dose of Valium to keep me calm , thinking of you and hope you do feel better soon , wishing you all the best , x
It’s never easy deciding wether to share your experience especially if it isn’t completely positive, I was very mindful of the fact that there are many people in the decision making stage and others whose ablations are imminent and the last thing I want to do is scare anyone. I just want to reassure you and anyone reading about my experience that despite everything, if in the future my SVT isn’t completely gone and my EP offers another ablation I would have it without a doubt.
My EP is really lovely and he has said that he wouldn’t class a 4 hour episode of SVT two days after a successful SVT ablation as a normal part of recovery. He has organised a Kardia for 6 months and now it is just a case of wait and see. After posting here and all the lovely replies I am more hopeful that things will settle down as time goes on.
Take really good care, I know how you are feeling it is so hard to live with this awful condition.
I’m so much more hopeful after all the replies I’ve had. I just need to be patient and wait and see. The important thing is that it’s not the ablation that is to blame its this horrible condition and it’s even more important to remember that there are lots of options still available if it hasn’t been a complete success.
I had my SVT ablation on a Tuesday and my EP said take it easy Weds/Thurs back to normal on Friday. It was not at all like that for me and I am relatively young (at the time 29) with allergies and mild asthma. It definitely took at least a month before my heart wasn't so sensitive any time I stood and I would say 6-9 months before the ectopics lessened. I also had some really bad anxiety to work on - I only had SVT for 2 years - just 3 episodes - but it really took a toll on me mentally. I am just past a year and finally getting to the point where I am not as anxious, meaning my heart is quieter and slower now. I'm read a lot in the forum before my ablation so I was definitely prepared for it to be harder than the EP made it out to be.
I was told almost the same by my EP, he made it sound like a walk in the park. I also did so much reading and thought I was really prepared for the recovery. It wasn’t until the 4 hour run of SVT and the arrhythmia nurse saying that an SVT ablation is quick and easy to recover from with no blanking period that I started to really doubt wether I had made the right decision. It made me feel like either it hadn’t worked or I was just a bit of a weakling 🥴
Reading your timeline of recovery really puts it into perspective, I have to be more patient and realistic. I also have to forget what the arrhythmia nurse said and listen to my body and all the advice I’ve been given today by lovely people like you that have taken time out of their day to reassure a stranger.
Wishing you all the best and glad to hear you have successfully tackled your anxiety and your heart is quieter.
Hi Kelly, I endorse what everybody else has said about the blanking period. It seems to me, thinking logically, that a scar is a scar whether it is for an AF ablation or an SVT ablation. It still takes 3 to 6 months to form. My EP told me after my ablation not to get down hearted if I experience runs of AF as this did not mean the ablation had failed.
I've had a few runs of AF but for the most part my heart is behaving itself in Sinus rhythm.
I think you will have a better idea of where you are after 3 months.
I totally agree with you about the scar. How can it be any different? I really wish I could communicate to that nurse how undermining that comment was to my recovery.
From posting here today I have learned that there really doesn’t seem to be any difference between the two ablations in terms of recovery time frames.
I hope your heart continues to behave, wishing you all the best 😊
Hi Kelly. I have been following your posts for a while. I know you've been having the SVT/afib issues for many many years, but you have learned a lot of new information and had a lot to process both intellectually and emotionally about this condition and years-long trauma in the last couple of months! It will take some time to continue to sort through all of it.
I do think that since these sites are mostly focused on afib, and atrial flutter and SVT are really different animals, it's hard to know what applies in one's own case. I was diagnosed with afib, and opted to try the medication route first as I had doubts about letting someone inside my heart; however, the medication "converted" my afib to flutter, which I then had an ablation procedure for (the flutter ablation is also a different procedure from afib ablation). Within 2 weeks I was experiencing symptoms again and I went through more than a year of jacking up the medication and still not having good results. It was really, really disheartening and discouraging because the whole time I was questioning whether I just "had unreasonable hopes" of what to expect. Doctors are SO wishy-washy here about afib and all things related to it. They think a 70% success rate is something to write home about!
But, I'm happy to say that as the result of a second ablation procedure from the very best and most expert ablationist I could find here, I learned that my hopes weren't unreasonable. He discovered that the first ablation had in fact failed (though my doctor for that ablation certainly never brought that up as a possibility!) and he performed a second ablation (this time for afib, so I can hopefully get off all medication, as I'm only 48). 7 weeks later, I'm a week from stopping medication completely and seeing what happens, but so far, I haven't had a single ectopic beat even since the procedure. (That's pretty amazing, as even on the maximum dose of medication I was having a lot of runs of SVT and ectopic beats before.)
I don't know enough about the health care system in the UK - I'm in the US - to know whether this is advice that one can follow without a large trust fund(!), but in my case, I feel that the thing that made all the difference was to seek out the very best ablationist. (My first ablation had been at a VERY well regarded hospital in Chicago, so I had assumed I'd get premium results, but it was a teaching hospital, and it turns out that a fellow performed the procedure with my doctor merely supervising. For all I know, it was his first atrial flutter ablation.)
I also took my time moving on to that second ablation procedure - it was serious to me to have someone crossing into the left side of my heart via transseptal puncture, and I really do believe that the "skill and experience of the operator" are GIGANTIC factors in success for someone my age with no real health complications. My symptoms and the drugs I was on were stopping me from exercising, and I couldn't get away from the ectopics and runs of SVT, but I did get away from having debilitating episodes so didn't feel like I couldn't live my life and, say, go on a vacation or RSVP for a party.
So, all this to say, the game isn't over for you. It's a roller-coaster for sure. Give yourself time to adjust to where you are now, and to see where things go. Check out what options you might have. If you can, don't restrict yourself to just the doctor you've seen thus far.
Thank you Karen, that was such a helpful and interesting reply😊
You are right, I feel like 60% of my knowledge regarding my condition has been learned in the last few months and most of it from this site! I thought I was quite well informed until I came here and had to navigate my way through an ablation.
In the uk the AFA forum is really the only place to get really good advice and support for any arrhythmia problems and when I first arrived here I thought that PAF was my primary diagnosis, it turns out that actually SVT is and that is also my trigger for AFIB and Flutter. So it’s all very new and very complicated and it seems that I learn something new every day.
I’m so inspired by your story and so thrilled to hear that your tenacity has paid off. I agree it is a very serious situation deciding wether to let someone burn parts of your heart, I ran away from it for years and years.
I am going to take all the advice you have given me, at the moment the most important thing is to wait and see where I’m at after a few months of healing. I will take it steady and make sure I really think about my next move if I have to make one.
Wishing you all the best with your final step towards living medicine free , what an exciting time.
Mine took six months before I actually had my energy Back and was able to exercise and do everything I did before. Everyone heals different so some don’t take as long as others but I think after sometime you will be glad you did it. My energy level now is great and I can do all the stuff I love... it been 10 months now .... hang in there it does improve.
As always, thanks for your honesty, Kellyjelly. Your posts are especially important for someone like me who is considering an ablation, trying to balance the risks and benefits. In general, I wonder if doctors underestimate post-surgery recovery times. So hang in there. There are people all over the world on this forum who are cheering for you.
As always your replies are just so lovely and kind 😊
I was scared to post about how I was feeling because I don’t want anyone to be put off or feel like the whole thing has been awful. It really hasn’t, what is awful is this condition, not the ablation. Having a heart that gets muddled up about how to beat is awful, the ablation is just the treatment. My daughter asked me if the ablation was as bad as being in hospital for 20 hours with a heart rate of 240 (my normal during an episode) it doesn’t even come close. I would take 10 ablations over one sustained episode of the various arrhythmias I have suffered with, lying there for hours and hours wondering if it will ever stop.
I think recovery is so nerve racking because you are willing it to work, you want it more than anything and you just have to wait and see. You are told in percentage terms at the time the success/ failure of the procedure you’ve just had. You go home and you can’t see anything, you may still have symptoms but you have been told you are virtually cured, it’s very bizarre.
I love the fact that there are so many people from so many places all helping and supporting each other. That is good heart medicine ❤️
No, honest feedback is so important, especially because this is such an individual affliction. And you seem to have the most complex condition imaginable! I would dread having a heart rate as high as yours gets! Mine peaked at 196 and that was before I was on appropriate meds, so I only have an inkling of what you must have suffered on a regular basis. I don't know what I would have done - other than panic, I know I would have done that.
That’s pretty much what I do, panic 😂 no matter how many times I have it I still react the same. My poor brain just doesn’t seem to get the memo that death isn’t imminent 🥴
196 is really high, I imagine you would have felt awful at that rate.
Oh Kelly, please don’t lose hope. It’s not even been a month since your ablation. My recovery was very slow, much slower than my EP predicted. I still don’t have all my energy back and my ablation was 15 February. I’ve also had some sense of uneasiness in my chest and it instantly causes me worry. I feel your pain! It’s true, everyone’s course is different. As we speak, I am back on a monitor for the next month due to some brief runs of svt. But I have had much better days of late and with each passing week, I do feel better overall. Some people have reported up to 6 months or longer before they feel recovered. Take it very easy, I know it’s hard not to feel discouraged, I have my days too, but it’s not the end of the road. Even if you need another ablation, at least you know now what to expect and won’t be as scared. Sometimes a second procedure does the trick. I’ll be keeping you in my thoughts.
It’s not that I’ve lost hope, it’s just that I got very confused regarding the SVT ablation and wether the recovery from that was different as the arrhythmia nurse suggested. Also the 4 hour run if SVT was really hard to deal with so soon after the ablation and it was completely unexpected.
I feel really reassured after posting here and hearing that lots of people have felt the same as me after an SVT ablation.
I’m sorry you have been having more SVT and I really hope they get to the bottom of it 🤞 I’m glad though that in general you are feeling better.
I am hopeful that I will soon be feeling better too.
Hi Kelly. Considering what a nervous wreck you were a few weeks ago, I think you are moving forwards very well. We all hold out hopes that Ablation will be our saviour but as I have discovered, you have to bide your time. I have had to be cardioverted since my ablation in January. I have been amazed at how much better I have felt. Two weeks of having fabulous days but it could all change in an instant. Having had an ablation and a cardioversion, at least we have learned that they are not procedures to get anxious about. They are a piece of cake. With so much money being put into Cardiac Research we can rest assured that they may come up with a cure for the dreaded AF. Kelly keep up your positive attitude and don't let set backs destroy your positivity. You have already come a very long way.
When I think back to how poorly I felt and how scared I was before my ablation I actually feel like a different person.
I think that you are right, only time will tell how successful it’s been and thankfully on this forum I have learnt that it takes some people more than a week to recover.
I’m so glad that you are feeling so much better, it must have been scary having a cardioversion after your ablation. Like you say though you now know that those things you have feared are more than doable.
Thank you for your kind words. Take care and long may our NSR last 😊🤞
When the chips are down which you are likely to get the odd day, just pat yourself on the back and congratulate yourself on how far you have come along.
Great question, I am definitely happy I had the ablation I had to do something, I was really struggling. I am so glad I faced it and gave it my best shot even though I felt scared. At the moment some things feel better, my heart doesn’t race as much when I eat, that was one of my most debilitating symptoms outside of my episodes of PSVT and PAFib. I have had some really good days where I definitely feel better than before. Some things are a bit worse, I’ve never had ectopics before and I’ve had quite a few since the ablation. My heart feels different and I’m not sure how it’s going to react whereas before I knew if I breathed a certain way or moved a certain way I could sometimes stop it going haywire, now those things don’t seem to work. I’m just trying to get used to it and get my confidence back. I’m definitely more anxious because I’m not sure what to do anymore if it goes into a bad rhythm which is silly because I know what to do really but I just feel on red alert after the episode of SVT post ablation.
So overall yes I am really glad I had the ablation, I will have another one if needed, without a doubt. I think it’s too early to know if I feel better overall but I am getting there Day by day. 😊
Post ablation I went back into what I believed to be afib for 2 hours 6 days later. It resolved while.. I was peeing. Obviously, your hr elevates when you pee and this seemed to do it.
I was absolutely devastated but many more experienced afibbers than me told me it was all part of the blanking period.
I also had much increased sensitivity. Suddenly lying down quickly, leaning forward, to the side or bending over would cause a short run of ectopics, followed by palps. This was an entirely new problem.
Since then, it gradually healed and I had a period of about 4 months where it was almost perfect.
Then I started having a whole host of new health problems and it all went tits up (excuse my French) for me again and now, as you've seen in my post that you responded to, almost anything seems to irritate my heart now.
Nurses, specialists, doctors, family and friends can offer all the advice and reassuring words they want but they can never know how terrifying anything in this area can feel when you experience it.
Thank you for your kind reply, I can tell you feel my frustration and confusion as I wade through the recovery process trying to hold my nerve and stay positive. It’s not easy. Today I’ve been to a garden centre for lunch with my family and tried lying in the sun reading for a few hours when I got home but I can’t relax because my heart is bloody racing and lolloping about and making me feel like sh*t 🤬🤬🤬
Not a problem. I literally had a new question every 5 minutes for about 3 months before I gradually learned when it was OK and when I should ease off.
All I can say is that almost anything that happens during the first 3-4 months following your ablation is probably to be expected, or 'normal'.
But don't feel bad or silly for feeling as I'd everything that happens is completely awful and scares you.
I found a lot of help on the afibbers forum too. Those guys are hugely experienced and can provide a lot of scientific papers and a lot of advice from experience.
I actually found the heart rhythm specialist nursing team less help than people who'd spent 25 years dealing with it.
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