Ablation Booked....concerns.. - Atrial Fibrillati...

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Ablation Booked....concerns..

Simoni profile image
64 Replies

Hi all, I'm 57 and I have an ablation booked for early Feb at Royal Stoke.

I've been getting AF for the last 12 or so months, started when i was excercising, running or biking, it seems to be happenning more nowadays not just when i am excercising.

When i get it...which is most days for varying periods of time my HR is not massively high, I am on 2.5mg bisoprolol per day which is prob keeping it low.

I sometimes get rush feelings when in Af, but mainly a flutter feeling in the chest, apart from that i don't feel overly tired or any other symptoms from the AF as yet, apart from mental torture.

I had decided to have the ablation to try and stop it getting worse and get some normality, being able to excercise without going into AF all the time, not to go back to competitive sport ..but just to be able to enjoy it again... at the moment I'm not enjoying it.

However I am really beginning to worry about the whole procedure, how involved it actually is...and the possible complications, as i've been told that among the risks of stroke/bleeding/breathing problems that could be caused by the procedure, there is a ratio of 1 in 50 chance of a serious complication.

The more i read, the more i am concerned about what to do....I dont relish the thought of making myself worse by having the ablation....but if I don't do it...i'll be on drugs forever and always wonder would it have sorted me out...

I know it has to be my decision, but I'd appreciate others opinions please.

Ta Sam

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Simoni
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64 Replies
CDreamer profile image
CDreamer

Hi I think it normal to have reservations & fear building as the date approaches. Yes, there are risks and a few could be serious but they are very rare - and you are going to be in the hands of very experienced, skilled team team who will be monitoring you very closely.

I’ve had 2 ablations 7 years ago and the night before I manifested all sorts of physical symptoms which made me believe I could not possibly go ahead with the procedure but of course there was nothing physically wrong!

You know it already - if you don’t go through with it you will always wonder - I had so many affects from the meds that was my reasoning for going ahead in 2014.

DO read the AFA advice on preparing for ablation & recovering from ablation - written by patients who have actually had ablations.

DO expect symptoms such as ectopics and higher than normal heart rate - all explained in the info leaflet.

DON’T rush your recovery- you may need much longer to recover than you are led to believe so allow at least 12 weeks before you stress your body in any way.

Be prepared that you may require more than 1 ablation and/or continue to take drugs for at least several months after ablation.

Also know it’s not a forever cure - my AF returned 3 years following, I’m not alone as many posters on the forum had similar experiences but I wasn’t nearly as symptomatic & apart from anticoagulants have never taken another heart drug nor will I ever again.

As to the procedure itself - you won’t remember a thing - GA or sedation they will give you amnesia evoking drugs.

Don’t hesitate to ask any specific questions and read others experiences as many report how they are doing post ablation.

Hope some of that helps.

Simoni profile image
Simoni in reply to CDreamer

Hi Cdreamer, thanks for taking the time to reply, i think i just need reassurance from people like yourself that have been through it, i'll read all the literature and try to settle down!!

MS444 profile image
MS444 in reply to CDreamer

CDreamer, Your Post says your AF has returned but is not as bed as pre ablation? But it is still AF so is it permanent AF or PAF? Thanks for clarifying.

CDreamer profile image
CDreamer in reply to MS444

By 2017 AF episodes became very frequent again and advised that only remaining option was Pace & Ablate or Amiodarone. I had pacemaker implanted 2018 in prep for AV node ablation and stopped allow AF so cancelled the AV node ablation.

2018 - Oct 2021 when I caught COVID - 3 short lived episodes of AF when I had chest infections. Just had a some rough episodes due to COVID but now back in NSR and hope to stay that way. I don’t take any heart rate or rhythm drugs.

Wasp1954 profile image
Wasp1954

Best thing I ever did was have an ablation. Dec '18 at the QE Birmingham. My attacks of PAF were becoming more frequent and I was very symptomatic. There really wasn't an option given it can become permanent where ablation becomes ineffective. I was sedated during the procedure. I do recall some pain midway through and I did mention it to which the EP said "give him some more fentanyl". It was a breeze and no AF since!

Simoni profile image
Simoni in reply to Wasp1954

Thanks sounds like a good decision for you

simchag profile image
simchag

I have had 4 ablations. 1st in December 2007, 2nd in December 2008, 3rd in February 2020 and my hopefully last in June 2020. Be sure to have the best Dr. with the most successful operations to do the procedure. Dr. John Bullinga at University of Pennsylvania did my last ablation.6/20. I highly recommend him.

saulger profile image
saulger

Hello Simoni. I am in the same boat. AFib diagnosed February 2018. Was prescribed just 1.25mg Bisoprolol and it worked for a while. The Bisoprolol was too debilitating for me and I stopped all medications and was good (infrequent PAF) till this year.

Like you, I also fear the ablation and, having read many AFib sites, learnt that some sufferers need several ablations to succeed in pausing the AFib.

I am 75, also love to exercise at a moderate level with a little intensity thrown in, am low HR 53, low BP 100/60, no co-morbidities.

As my HR is low my AFib episode average 100bpm, and I am now on Flecainide 50mg twice a day and no beta blocker and no anti-coagulant.

Have you tried the anti-arrhythmia route with Flecainide or similar? It may help?

Also, have you looked at your diet and whether food intolerance is at play?

Lastly, have you checked your blood electrolytes: calcium, magnesium, potassium, sodium, vitamin D3+D2. There is much discussion on the web that correcting electrolyte imbalance and adding certain supplements is very helpful?

Many AFb sufferers swear by "NATTO" (Japanese fermented soya bean breakfast food), which I shall be ordering.

All the best. Saul

Singwell profile image
Singwell in reply to saulger

Hadn't heard of NATO but am a big fan of live miso. Works for me.

in reply to saulger

Please don't hesitate to contact AF Association for support & information should you need it: info@afa.org.uk / 01789 867 502

saulger profile image
saulger in reply to

Thank you very much, Kirsty.

Simoni profile image
Simoni in reply to saulger

Thanks Saul, i've tried flecainide but it makes me feel light headed, so its a no go, I also take magnesium supplements, I'll have a look at diet, cheers Sam

Lenlec profile image
Lenlec

I was similar to you. Had Af for about 7 years. Only got an episode once a month at most. And 100mg flecanide sorted it straight away. But my ep suggested ablation I was worried and reluctant at first but had it done sept 14 Coventry. No problems my ep said it was a text book procedure. Nothing since just 10 bpm higher resting heart rate. I used to run daily. But done nothing for 8 weeks or so now apart from a few brisk walks. I’d recommend going for it

in reply to Lenlec

Please don't hesitate to contact AF Association for support & information should you need it: info@afa.org.uk / 01789 867 502

Simoni profile image
Simoni in reply to Lenlec

Hi Lenlec sounds like a great decision for you, thanks Sam

Singwell profile image
Singwell

Yes I think it's easy to scare yourself. There are risks associated with all procedures. Your hospital has a good reputation I think - make sure your EP has a good success rate with the ablations etc - do your risk assessment. Although some people have a rough time post ablation, many do not. I did but it's totally been worth it for the improvements I feel. I need a top-up, which us not uncommon, but my QOL is definitely better 7 months on.

in reply to Singwell

Please don't hesitate to contact AF Association for support & information should you need it: info@afa.org.uk / 01789 867 502

Simoni profile image
Simoni in reply to Singwell

Thanks Singwell, much appreciated Sam

Rubymurray25 profile image
Rubymurray25

I always think where would I be on my AF journey if I hadn't had my two ablations and truly believe a lot worse off from where I am now, under control with minimal medication. I was really scared about having my first one done but when you see 5 professionals around you and the main man you trust, it really does eradicate the fears . Good luck.

in reply to Rubymurray25

Please don't hesitate to contact AF Association for support & information should you need it: info@afa.org.uk / 01789 867 502

Simoni profile image
Simoni in reply to Rubymurray25

Hi Rubymurray25, very reassuring Thanks Sam

iomhair profile image
iomhair

I think everyone has concerns but there are risks to every procedure. Besides, there are risks in not getting it done. After a couple of failed attempts I finally had a successful cryo ablation in Jan 2014 and have never looked back. The difference between before and after is immense. The problem with not getting it done is that AF gets worse over time. All the best.

in reply to iomhair

Please don't hesitate to contact AF Association for support & information should you need it: info@afa.org.uk / 01789 867 502

Simoni profile image
Simoni in reply to iomhair

Hi iomhair, Sounds like you had a great outcome, thanks Sam

Sfhmgusa profile image
Sfhmgusa

I had two ablations last year when hospital treatment was more risky with covid but no vaccine. It was a very good decision I am only on anticoagulants now and able to do everything and more (weight loss means I’m a bit fitter) that I could do before.

in reply to Sfhmgusa

We're glad to hear how well you are feeling. Please don't hesitate to contact AF Association for support & information should you need it: info@afa.org.uk / 01789 867 502

Simoni profile image
Simoni in reply to Sfhmgusa

Thanks Kind regards Sam

nmack profile image
nmack

Hi. I'm going through the same experience. I've had afib for two years with rare symptoms. I'm 68 and the doctor thinks I could live to 98 (I had to laugh when he said that). My afib has become persistent since May or June and ablations become less successful the longer you are persistent. He stresses QOL and I think he's afraid of me developing heart failure as I already have a moderately dilated left atrium. As you, I am very aware of the risks of ablation you mention, plus others. It's a tough position we are in. We'll regret it we don't get ablated and things get worse and our QOL suffers. We'll regret it if the ablation fails and makes us more symptomatic or causes a nasty side effect and really decreases our QOL. I'm leaning towards having an ablation with trepidation. I know this probably doesn't help much but I thought I'd let you know, you are not alone. Good luck with your decision.

in reply to nmack

Please don't hesitate to contact AF Association for support & information should you need it: info@afa.org.uk / 01789 867 502

Simoni profile image
Simoni in reply to nmack

Hi Nmack, like you say....tough decision for us, i hope we both manage to make the right decision for us, All the best Sam

KMRobbo profile image
KMRobbo

I had my PVi cryoablation at Royal Stoke. 3 years 10 months ago . No afib since. No drugs required for over 3.5 years.

Did you get the one in 50 from the EP / cardiologists? I believe they have to advise you of possible complications, and maybe for their insurance purposes and I think the stats are general UK ones.

More importantly ( IMO) did the EP advise you that you were a good candidate for a succesful ablation?

I was extremely well looked at Royal Stoke. I was out the same day.

Who is your EP ?

in reply to KMRobbo

We're glad to hear how well you are feeling. Please don't hesitate to contact AF Association for support & information should you ever need it: info@afa.org.uk / 01789 867 502

Simoni profile image
Simoni in reply to KMRobbo

Hi there KMRobbo Good to hear from someone who has had a successful cryo ablation at Royal Stoke, the hospital does have a good reputation as far as i know. My Cardiologist Dr Beynon said I have 75% chance of success, but also quite rightly told me the associated risks and their %ages.

Cheers Sam

KMRobbo profile image
KMRobbo in reply to Simoni

Dr Beynon did my ablation. IMO a very knowledgeable sensible man. He will follow up on you on the day, 3 months and 12 months, and was contactable if required.I watched a lot of my PVI ablation on the screen and found it very interesting .

Are you having a PVI Cryo?

Simoni profile image
Simoni in reply to KMRobbo

Thats great to hear, i thought Dr Beynon seemed very knowledgeable and helpful when i saw him, a very nice chap who really seems to know his craft.

Yes I'm up for Cryo Pulmonary Vein Isolation .

I imagine every procedure is different but how long did yours take?

Cheers Sam

KMRobbo profile image
KMRobbo in reply to Simoni

As I remember it took about 2 hours but I maybe wrong. I think sedation affects your track of time a bit. I think I was out of the lab at 12:30 ish . Elapsed time from going to the path lab is longer as they spend a lot of time setting up making sure you are comfortable and plugging you in to the monitoring and the sedation. I was lying along the big screen , I could not see all of it but did see a lot.

There are 4 pulmonary veins the actual time ablation for each is only a few minutes or less but again it seemed all set up time between the veins. I wasn't bothered , if they took all day and night to get rid of the afib it would have been fine by me.

When I came out I went to a recovery room for an hour or so just so you can be checked on, and I got a drink of water. They are keen to check that the groin entry point is not bleeding before you move . The Dr. also came to visit and advised the ablation was succesful and had stopped all the afib.

Once they were happy with me i went a general room for a longer, still in a bed. There I had a cup of tea and a chicken and stuffing sandwich and drink ( meal deal) I took with me. I think also took a book .

Again the focus is on ensuring that the groin heals enough for you to walk to your car and into your house and up to your bedroom at home. They are very focussed on the groin. ( by the time you are out of the lab they are happy with your heart). I was allowed to call my chauffer at 16:30 ish but as I live an hour plus from Royal Stoke it was 18:15ish before my wife got there. Once home straight upstairs to bed and you are not allowed downstairs for 24 hours. Going downstairs puts more pressure on the groin. I had no issues at all. In fact during the procedure I did not feel anything in the groin . I was surprised when they told be the catheter was in place as I did not know they had started!

I was not allowed to drive for 48 hours I think .

Simoni profile image
Simoni in reply to KMRobbo

Thanks for the info, its really helping me to come to terms with the procedure and what it entails from an insiders perspective, cheers Sam

Almost everyone has reservations and that’s only natural but it’s a very common procedure and it’s very rare for things to go wrong. In the extremely unlikely event that something does go wrong, you couldn’t be in a better place because they will have the equipment, knowledge and experience to deal with any eventuality so try not to worry and focus on having a better life.

There are two AFA factsheets available which I’m sure you will find very helpful. Suggest you print them and keep them close to hand for before and after your ablation. Good luck and please let us know how you get on……

heartrhythmalliance.org/res...

heartrhythmalliance.org/res...

Simoni profile image
Simoni in reply to

Thank you Flapjack, what you say makes good sense, Cheers Sam

Best thing I ever did. My QOL came back instantly and I feel normal again. Best conditions are when you are younger and it is early stages. My cardiologist/EP said there is a 3% year on year risk of it returning but in my case it would be even lower than that. Honestly I wouldn’t hesitate. When you are in PAF you forget what life without it is like but honestly I can tell you its sweet. Listen to all the excellent advice here - read all the info, accept its a slow climb back up again but honestly in my case worth every single second of feeling well again.

in reply to SilverliningsForNow

We're glad to hear how well you are doing since your ablation! Please don't hesitate to contact AF Association for support & information should you ever need it: info@afa.org.uk / 01789 867 502

Simoni profile image
Simoni in reply to SilverliningsForNow

Thanks SilverliningsForNow, glad you got a good outcome, kind regards Sam

secondtry profile image
secondtry

My rationale for postponing an ablation (offered by cardiologist & EP) was 1) I wanted to buy time to institute Lifestyle changes in case that worked 2) I was quoted a 70% chance of success with the likelihood of another needed, with no guarantee to come off the drugs 3) the procedure including the TOE beforehand did not sound a light undertaking 4) physically I was not in the best of condition 5) I hoped a postponement would bring better techniques and even a possible non-invasive solution.

So at age 60 I opted for just Flecainide 200mgs/day (not suitable for everyone). The result is excellent quality of life and just two very brief AF episodes over the last 7 years. The price to pay is I dare not go back to the old life and scared to rock the boat staying on the Flecainide which I guess eventually, if I don't wean off, will cause side effects unless I am lucky like one person here who has been on it for 35 years!

Best wishes.

in reply to secondtry

Please don't hesitate to contact AF Association for support & information should you ever need it: info@afa.org.uk / 01789 867 502

Simoni profile image
Simoni in reply to secondtry

Hi secondtry, thanks for the reply, I cant do Flecainide, have tried 50mg twice a day and all it did was make me light headed, so it obviously doesnt agree with me, all the best Sam

MS444 profile image
MS444

I decided to get an ablation in March 2016 because pill in pocket flecainide didn’t work and I had frequent PAF after years of slowly increasing frequency. Ablation worked but I needed a second ablation three years after the first. PAF returned coinciding with severe work overload, workplace stress, insomnia and exhaustion. The second ablation was successful and I changed jobs to one with a normal workload. I had ectopic beats after the second ablation but after 2.5 years they are now rare. I’m free of PAF. It shows how the heart function can change/recover slowly from ectopic beats over time and everyone is different.

in reply to MS444

We're glad to hear you are doing well after your 2nd ablation. Please don't hesitate to contact AF Association for support & information should you ever need it: info@afa.org.uk / 01789 867 502

Simoni profile image
Simoni in reply to MS444

Hi MS444, glad you got sorted thanks for the reply regards Sam

We are here to offer information & support should you need it, please don't hesitate to contact AF Association on: info@afa.org.uk / 01789 867 502

paulalex1313 profile image
paulalex1313

I had AF for more than 10 years before O was offered ablation, although it was a relatively new procedure at that time. I was taking varying amounts of Flecainide Acetate , the doses dependant on the doctor prescribing. I eventually had three ablation procedures and I still take two 100 g Flecainide Acetate tabs a day, but I have been AF free for Round 8 years now and it has been life changing and life enhancing.

Good luck with the ablation, which if successful , which is the most likely outcome, will make you feel reborn.

Simoni profile image
Simoni in reply to paulalex1313

Hi paulalex1313 glad you are sorted, thanks for your best wishes and for the reply cheers Sam

Tomred profile image
Tomred

hi simoni i have just turned down an ablation offer last week because i would stress myself worrying beforehand whilst it seems to be successful for many there are others maybe not so ; i read on here a few weeks ago someone saying they have had 20 ablations , this i think helped sway my opinion , plus the risk factors as you have mentioned , i opted for extra meds first to see how that would go , hopefully if i ever felt the need for an ablation that im not now put on the backburner , so to speak , i found this a very hard thing to decide upon. This forum is very good and you will get good opinions to help you decide.

Simoni profile image
Simoni in reply to Tomred

Hi Tomred Thanks for the reply Regards Sam

dave152248 profile image
dave152248

I have AF which started when I hit 50 and now i've decided to go for the ablation myself. I workout 4 times a week and the doctor told me never to workout when in AF as it could cause my heart to go out of control. I've now been put on blood thinners to reduce the chance of getting a clot. I'm only 57 and i feel AF has started to take over my life :( I use to get an attack 2 or 3 times a year, now i'm getting them 4/5 times a week. :(. Has anyone had a successful ablation where its gone for good?

Swamps profile image
Swamps in reply to dave152248

Hi see my post below it’s one of the best things I’ve ever decided to have doneBasildon cardio unit 👍

dave152248 profile image
dave152248 in reply to Swamps

I'm having my ablation at Basilon, who was the doctor that did yours there?

Simoni profile image
Simoni in reply to dave152248

Hi dave152248, intersting that your doc said dont excercise, i was told by cardiologist that as long as i felt ok even if in AF there is no need to stop excercising moderately, i get it most times i excercise amongst other times, Regards Sam

KMRobbo profile image
KMRobbo in reply to dave152248

I am coming up to 4 years afib free since my ablation . Is it for good?? I don't know, but I do know if AFib comes back tomorrow morning, I will happily have another ablation tomorrow afternoon to keep off the drugs and AFib interruptions to my life! I was 57.5 years old when I had mine.

I was also told to exercise. I was not a competitive runner, just did it to keep fit 10 or 12 nikes a week on two occasions. Afib not caused by running In fact for 20 months following being diagnosed with AFib, I used to go running to STOP AFib. 8 or 10 mins running and I was back in NSR. Sadly that trick stopped working an the 12th afib attack in 20 months . That was when I decided on the ablation ( decision helped by 8 days in afib 165 to 195 bpm resting and the side effects of the drugs regime I was then having to take to keep my heart in NSR).

Swamps profile image
Swamps

Hi I’m 62 now and was in a very similar position almost asymptomatic but did pass out once briefly just after getting up in the morning I was running up to 10 miles and never less than 5K and going to the gym so fit and healthy other than AF and occasional tachycardia

My ablation 8 years ago fixed me! No issues at all after what was a frustrating 6 month period where I thought they had made it worse! So be prepared for some interesting rythm’s and very low pulse rates (28 at rest on occasion and over 120 on others) it gets slowly better as you can do more and more but take recovery seriously slowly and sensibly use a pulse monitor and keep a real eye on your heart rate

I consider myself lucky to so far only have required the 1 procedure but I have on the whole kept myself fit ISH

Hope a positive post motivates and enthuses your resolve… Take it slow it’s very well worth it.

Listen to the arythmia nurses because the surgeon in my case seemed a bit enthusiastic on recovery times the nurses more realistic, above all listen with caution to your body and let it judge ( but that’s after 3 months) remember the ablation is not the fix it’s the scar that forms that does the work and that can take upwards of 3 months post procedure

Oh and I am completely medication free and in the years since I have completed the 3 peaks challenge climbing Snowden, Skaffel pike, and Ben Nevis in 24 Hrs and become a PADI Open water diver amongst other things👍

Good luck hope you have the benefits I have 🤞

Simoni profile image
Simoni in reply to Swamps

Hi Swamps, sounds like a great outcome for you, congratulations on all those achievements you list...fantastic, keep it up! Regards Sam

kalgs profile image
kalgs

I was exactly the same. Had my ablation 8 weeks ago . No complications. Quality of life a thousand times better . I didn’t realise how much the evilAF effected me .

I was a wake for the procedure no issues .

wilsond profile image
wilsond

I have said in detail before about my thoughts on this. I share your dilemma!.Since I have been diagnosed officially ( but suspect I had AF way before) at age 53 in 2013 I have had an up and down experience.

First PAF then AFlutter .

Was put on ablation list,then joint decision by EP and I to postpone,as on the lengthy waiting list of 12-18 months I had stabilised on meds and lifestyle changes on a big scale.

This was at least 3 years ago now. (Due to Covid )

I am still maintaining stability except for a few episodes of note,dealt with by extra meds as PIP.

The main issue for me that people don't seem to appreciate is this:

You may very well NOT get ' the main man you trust' on the day as described in the replies here.

So the whole point of researching and building trust is pointless without a guarantee of who is performing it. ( NHS)

I was told that it all depends on the list on the day etc ,this is UHCW (Coventry)

I understand there are risks,having had several other operations this is familiar.

I understand there can be quite lengthy responses by the body and I understand that there may be a top up required.

But this above really spooks me.

It's a difficult choice for many of us. If I was laid out by frequent attacks , could not tolerate meds,lifestyle changes had no impact ,and I got the EP of my choice doing it ,it would be an easier decision!

I hope all goes well whatever you decide to do. Please let us know how you get on. ATB x

Poncegirl profile image
Poncegirl

I had a cyroablation 8/2020. My afib was getting worse and the meds were taking it’s toll n me. My afib was going on for about a year. I met the criteria as a good candidate, best call I’ve ever made in my life. The key is being in good health other then afib, not overweight either. But the biggest key, your doctor. I went to Mayo

Poncegirl profile image
Poncegirl

Also, since ablation not one episode of afib or SVT. Only med is eliquis due to being over 70

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