Reoccurrence after 7 years - Atrial Fibrillati...

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Reoccurrence after 7 years

Steveh6874 profile image
31 Replies

Hi I ad an ablation in 2014 and was up until last week was afib free , then last week my heart seemed to judder and the afib kicked back in I was absolutely gutted , is this common after so long being afib free and will a second ablation sort this out , my minds in a spin at the moment as all the old horrible symptoms are back in full force I'm wiped out

Thank you

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Steveh6874 profile image
Steveh6874
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31 Replies
BobD profile image
BobDVolunteer

Some might say you have been lucky Steve. I'm 12/13 years since my last but have had other arrhythmias the last three or four years. Maybe time to contact your EP again.

Steveh6874 profile image
Steveh6874 in reply toBobD

Hi Bob Thanks for the reply , I've been in touch with my EP but on the old waiting list now , its just so disappointing after being afib free for so long

Thank you

Steveh6874 profile image
Steveh6874 in reply toBobD

Hi Bob Can I ask you please how as ablation moved on since I last ad one

Are they more successful and more accurate and have the techniques improved much

My last ablation took 4 hours and I was awake for it , is that still the case

Thank you

BobD profile image
BobDVolunteer in reply toSteveh6874

I'm no expert but I suspect that most of the improvements in methods and technology merely serve to make the operator's job easier. Does that transfer to better outcomes? Maybe where there is a highly skilled/ high through put EP at work. A forumula one car is technologically far ahead of my BMW but I would likely crash one in the first 300 yards!

Steveh6874 profile image
Steveh6874 in reply toBobD

Thanks Bob

Contra21 profile image
Contra21

How do you know you get afib or what feels like. I have ectopics and the terrify me

Not uncommon. Any reasons af might have returned now?

Steveh6874 profile image
Steveh6874 in reply to

Nothing different to trigger it I just felt a bit strange a little anxious as if my mind knew what was happening then my heart quivered and I was back in afib

CDreamer profile image
CDreamer

Very disappointing when that happens, sympathies.

Mine lasted 3 years so agree with Bob that you had a good run & yes it’s not unusual.

Steveh6874 profile image
Steveh6874 in reply toCDreamer

It is disappointing after so long I thought I'd cracked it

You were very lucky! My first AFIB ablation in early 2011 failed after 9 months. However, the 2nd one lasted 10 years of peace and normalcy.

EP's and their staff are all aware that it often takes two ablations to get the high success rates .... more often than not.

I know exactly how you feel .... as my AFIB returned in AUG 2020. I didn't have to wonder if it was AFIB. Once you've had it as bad as I did ... you never forget what it feels like. This time I had something new, though. Tachycardia and AFIB.

I contacted a world-class EP immediately. Underwent ablation on OCT 22. Recovery went well. On the mend ... and will be undergoing some imaging, possibly some minor ablation touchup, and possibly installation of a Watchman Device.

Was pleasantly surprised how advanced technology has bettered the ablation procedure in 10 years. It wasn't bad back then ...... but cardiac mapping, groin insertion healing, mobility, and recovery time were all better this time around.

I asked my EP's arrhythmia nurse and surgical assistant the same question on your mind .... is this that common after so many years of normal? She told me, "It's a progressive disease . . . "

Good Luck! with your treatment and ablation recovery, if you go that route. I suppose you will. I never considered any other options after going so long with good result after 2nd AFIB ablation. (btw ... my first ablation was for atrial flutter, so my recent was my 4th. When I go back in JUN or so ... that will be my 5th).

Consult with the best EP you can find ... even if you have to fly there. I never go with the mediocre local talent.

Pinsy profile image
Pinsy in reply toThe_Lord_is_with_Us

How do you know who is the best EP? Difficult to find stats in uk in my experience

The_Lord_is_with_Us profile image
The_Lord_is_with_Us in reply toPinsy

Well ... it's certainly not on a billboard .... and somewhat hidden information.

In my case, I did two or more days of searching and research on the internet ... and finally came to several clinics in the USA who specialized in AFIB ablation with the best results.

Then, I started contacting them for more info. Eventually, I settled on an arrhythmia clinic in San Francisco (a couple hours by plane away from me). The EP's were partners Dr. Natale and Dr. Steven Hao.

Dr. Hao performed 2 ablations in 2011. My recent one, in OCT, performed by Dr. Natale (who has branched off on his own and heads up a 14 doctor EP group in Austin, Texas).

In reading here, the UK has lot of differences in ablation treatment than the USA. Here ... you're kept overnight for observation ..... mandatory. In UK, seems they are sending patients home the same day. I also read here that many AFIB ablations are done with pill sedation. My first atrial flutter ablation was done that way (which I didn't care for), but the AFIB ablations were all under general anesthesia.

As a final observation, seems like in the UK they are quick to escalate things beyond ablation ,,, to pacemaker and ablate .... or to no more ablation recommended ...... or to med management and permanent AFIB for patients.

In the US, EP's, especially the better ones, fight AFIB to the bitter end ... and seem to accept all challenges no matter how complex. I'm wondering if the UK has enough quality EP's? Is there a patient overload ... so at some point they just have to 'stabilize' and move on? (I'm basing my observation on only what I've read here from UK patient experiences, so perception may not be entirely accurate.)

Steveh6874 profile image
Steveh6874 in reply toThe_Lord_is_with_Us

Thanks for the reply I'll be going for another ablation I hate having this horrible feeling again , your right you never forget it it wipes me out Good luck everything works out for you

Elli86 profile image
Elli86

Hi Steve. Sorry to hear that mate. 7 yrs sounds like a hell of a run though. Hopefully you’ll be able to have another one and get the same outcome 💪 I think I’d take ablations with runs of 7 yrs attached all day long. Hopefully you get it sorted mate.

How old are you Steve?

Steveh6874 profile image
Steveh6874 in reply toElli86

Thank you its another ablation for me as soon I can get one I am 54

Elli86 profile image
Elli86 in reply toSteveh6874

Oh right ok so you were pretty young when you had your first ablation as well. How long were you suffering AF before you had the ablation? I’m only 34 and had it for a year already 😩

Steveh6874 profile image
Steveh6874

It was a few years before I actually saw an EP my GP referred me to my local hospital and a cardiologist was treating me and as my EP said he was actually making my condition worse with certain tablets The cardiologist knew he couldn't do anything for me only try and control the symptoms with tablets , I was very angry when I found out and wanted to know why he didn't refer me on

I ad to find a EP at another hospital myself which wasn't easy to do

Elli86 profile image
Elli86 in reply toSteveh6874

🤬🤬 mate that’s ridiculous and everything that’s wrong with the healthcare system today! Unbelievable! Give them pills and send them packing! If he knew he couldn’t help then should have referred you too a specialist! Bloody ridiculous! I don’t blame you for being angry mate. Did you put a complaint in? Someone like that shouldn’t be allowed to do it to other people. What tablets was he giving you out of interest?

cuore profile image
cuore in reply toSteveh6874

You were lucky you got out of the clutches of the cardiologist. My GP did the same thing to me. Then when I became persistent, he referred me to the lousy cardiologist who had taught him and who was going to do the same thing -- just treat with tablets. I had to make a fuss and insist on seeing an EP. Unfortunately, in persistent the heart gets really remodelled, so now I have a remodelled fibrotic heart. I blow a fuse when I hear stories like yours.

Now to address whether ablations have improved. Seven years is a good stretch for technology. Other than the skill of the EP, keep two items in mind: the catheters and the mapping. Both have improved in seven years. If you Google them, you can view the latest ones being used.

Next is technique. A difficult ablation is for peri-mitral atrial flutter which is done in the left atrium. Ethanol infusion of the vein of Marshall is an advanced technique that not too many EPs use. The latest method of ablation, coming in about three years or so because it is in the trial stage now, is called Pulsed Field Ablation. It uses magnetic fields that target the actual cell producing the electrical signal and destroys it but does no damage to the adjacent tissue. That means there will be no scarring to block electrical signals which is the current system now that uses thermal energy either heat or cold.

Since you have experienced just one episode you may get a cardioversion first before jumping right away into a second ablation. It is always so uplifting to hear stories where an ablation has held for years despite that AF always lurking over our shoulder.

Steveh6874 profile image
Steveh6874 in reply tocuore

Hi thanks for the reply it was very helpful I cant believe things like this happen, I can only think it's the cardiologists ego that stops them referring on

I don't think cardioversion will work for me I've ad 4 and the longest one lasted just a week

I am interested to hear about the pulsed field ablation though but I suppose that will only be available in America for a long time

Thank again

cuore profile image
cuore in reply toSteveh6874

I don't think it's just the cardiologist's ego; I think that it is more lucrative to keep a patient than refer, plus it is laziness because it is time consuming to write a report to refer a patient. If the cardiologist sends the patient on, that cardiologist will not make the money. My lousy GP had me coming in for 11 appointments in one year until I became persistent when he had to refer me. At that eleventh appointment, I asked him what about anti-arrhythmic drugs. His reply was that he was not licensed for those. So, he was very happy to chi-ching the cash register as my heart was getting worse and worse. And, I also believe he would have been really happy just to continue to give me rate control drugs since he was even apprehensive about even mentioning the word ablation.

Steve S. Ryan (from the States) writes a blog explaining AF in layman's terms. He even has diagrams on Pulsed Electric Field Ablation. You might want to view his latest report.

a-fib.com/2021-af-symposium...

Steveh6874 profile image
Steveh6874 in reply tocuore

Thank you very helpful cuore much appreciated

Steveh6874 profile image
Steveh6874

I did complain but nothing ever happened I suppose I could have pressed it further but I was just relieved to be getting proper treatment, I ad to take take my medication in for my first appointment with my EP he took one look at the pills and put them straight in the bin and explained the harm they were doing I cant remember what they were called now , but I am still disgusted with the cardiologist playing with my life

Elli86 profile image
Elli86 in reply toSteveh6874

Sounds like a complete idiot Steve and shouldn’t be allowed to continue. How many people is he doing that too 😡 sounds like he still needs to be under supervision. I’d love to know what tablets he was actually giving you 🤔

Elli86 profile image
Elli86 in reply toSteveh6874

Just advice as well mate if your replying to someone directly then you need to click the reply button below their message otherwise they don’t get notified that you’ve replied 👍

Jetcat profile image
Jetcat in reply toSteveh6874

Hi Steveh6874 when I was first admitted to hospital after my first bout of AFIB aged 44 they ran tests etc and said my heart was strong, normal, no abnormalities, and I’m in good all round health so it’s lone AFIB. on my discharge I was given digoxin to start taking. I took one tablet and within a couple of hours my heart was banging out my chest. I walked upstairs and my HR was 130 BPM.!!! while I was laid on the bed to calm myself down considering calling 999 a hour or two had passed and my phone rang.? It was the cardiologist from hospital instructing me not to take the medication at all.😳 I told him what was happening and he said it will wear off but any pains etc and come back to hospital.!! I sat it out for another 6 hours and sure enough my HR was nice and slow again as the digoxin had left my system. On my next meeting with a different cardiologist she told me that you do not give digoxin to a young strong healthy heart and there had been a mistake made somewhere, she wasn’t happy at all. Thankfully that is the only single time ever iv been given the wrong treatment. but it just goes to show how mistakes can happen.

Steveh6874 profile image
Steveh6874 in reply toJetcat

Thanks for the reply jetcat It's pretty disturbing that this is happening, I only really realised he was treating me wrong when a nurse in confidence pointed out to me that I was basically seeing a plumber instead of an electrician , I think he would have been happy to keep me on tablets to this day

Luckily my EP was very good last time

Elli86 profile image
Elli86 in reply toJetcat

😬😬 that’s a dangerous one mate! Mistakes definitely happen and no one is immune to making them but Steve’s scenario sounds like pure negligence! To know that you can’t help and still carry on is not acceptable at all. If your out of your depth and know it then just refer to specialist

Jetcat profile image
Jetcat in reply toElli86

Totally agree.👍👍👍

Steveh6874 profile image
Steveh6874

Sorry didn't realise

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