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Decision to make!

blackcat123 profile image
24 Replies

I haven't posted here for a long while but read the posts quite often. I have had two ablations. The first made things far worse. The second a year later, improved things so that I only had a few episodes during the next year. However, AF became more frequent again and I have suffered weekly episodes since last autumn. Just recently they have become even more regular. I saw my EP in December and he said he would leave things for a few months to see if things settled at all. He said I could try a couple of different medications (I had flecainide for a long time but stopped it a few months after my second ablation, it had never worked for me anyway!) or I could go on the list for a third ablation but that he couldn't guarantee it would help...I see him again next week and will have to decide what I want to do. I'm leaning towards another ablation but very apprehensive, as unlike most people, I found it incredibly painful. Pain relief and sedation seemed to have minimal effect. I saw every minute of the two hours on the clock while I was lying there.

I just wondered about other people's journeys and what they did and if anyone could help me make up my mind! What would you do in my situation?!

Thanks in advance for any advice.

Judie. x

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24 Replies
Kellyjelly profile image
Kellyjelly

I am on the point of having to make the decision as to wether or not to have my first ablation so I can’t imagine how hard this decision is for you.

Can you have the procedure done under a general anaesthetic instead of sedation?

It must be so hard to know what to do especially if your doctor can’t offer you more reassurance. I wish you all the best and hope someone can be of more help than me.

blackcat123 profile image
blackcat123 in reply to Kellyjelly

Thank you Kellyjelly, They don't seem to do ablation under general anaesthetic at the hospital I go to. I did ask last time but was told no.

I had no hesitation about going for my first as I was so keen to end the awful episodes and medication hadn't helped.

I hope you come to a decision that you are happy with. If you are very symptomatic and meds don't keep AF at bay then I think it's worth a try, but of course, it's very much up to you.

CDreamer profile image
CDreamer

I think it is a very personal decision and for me dependant upon how symptomatic you are with the AF, how you cope with risk and what are the chances of a third ablation successfully eliminating the AF and for how long?

Are you prepared to go through the pain to make the possible gain?

Maybe do a thought experiment -

Part 1 - imagine how you would feel if you decided to stick as you are and find coping mechanisms to live with the AF?

Part 2 - imagine how you would feel and what you would think if you had the ablation but it didn’t successsfully eliminate the AF?

Part 3 - imagine how you would feel and think going ahead with the ablation and it worked?

Which is the best fit for you intuitively?

Hope that helps.

blackcat123 profile image
blackcat123 in reply to CDreamer

Thank you CDreamer. I am very symptomatic when I have my episodes. It floors me for the duration of the episode which usually lasts about five or six hours. It impacts greatly on my life as I'm always afraid to go too far from home, especially on my own, as I worry AF will start and I will have a job making my way home.

The thought experiment was a great idea, and my gut instinct immediately drew me to no 3! Thank you again.

Buffafly profile image
Buffafly

I am increasingly considering that if ablation doesn't work for you a pacemaker is the way to go. EPs will always favour ablations but my cardiologist told me that a pacemaker used to be the only option if medication didn't help or wasn't suitable. Pace and ablate seems to be most successful from what I have read here. My AF has returned but I am not suffering in the way you are, I can understand you can't put up with that. Best wishes if you decide on a third try 💜

PS Could you not be referred to an EP at another centre? One that uses GA? Considering your situation I think you are justified in asking for that and a different EP might be more successful.....

blackcat123 profile image
blackcat123 in reply to Buffafly

Thanks for your reply Buffafly,

The day may come for pace and ablate but don't feel anywhere near ready to consider that yet.

I live on an island off the west coast of Scotland and am limited to the two hospitals that deal with ablations in Scotland. I go to The Golden Jubilee in Glasgow. I didn't find the first EP did a very good job in my ablation but saying that, it was cryo ablation and obviously my problems were in other areas too. I also suffered from some damage, (fortunately only lasting a few months) to my phrenic nerve.

The EP I have now comes highly recommended and he was certain he had dealt with all the problem areas. Maybe I'm too good a healer and ablated pathways became active again!

I will discuss the GA option with him again although I am aware that recovery from a GA takes a lot longer. I have had many during my life and always found this to be the case. Probably more so at my age. (61)

Thank you again.

Buffafly profile image
Buffafly in reply to blackcat123

Looks like you don't really have much choice, best wishes again and please let us know how you get on. I dread GAs myself, hopefully the pain management can be improved for you.

Kellyjelly profile image
Kellyjelly in reply to blackcat123

My mum lives on the Isle of Arran, blackcat123, I adore the west coast of Scotland 😊

There is no such thing as GA not being available for ablation, Waiting time is generally longer to get an anaesthetist. Pain considerations should not be a factor in your decision. Is your GP able to help you sort that out?

Does your EP use 3D mapping? I imagine this must improve the chances of a successful outcome.

blackcat123 profile image
blackcat123 in reply to

Thank you oyster. I will definitely mention the GA option to him again or at least discuss a way to manage my pain more successfully. As you say the fear of the pain involved should not influence my decision on another ablation. My gut tells me to go for it.

My EP does use3D mapping and as I said in my reply to Buffafly he was certain he had dealt with all my rogue pathways.

Thanks again for replying.

Could you ask for a general anaesthetic? I had that and it was over in a flash even though it was actually 4.5 hours no pain at all.

windsor1944 profile image
windsor1944 in reply to

Yes my Doctor always uses sedation and I'm out during the procedure. I have had many ablations with no problems

blackcat123 profile image
blackcat123 in reply to

Scoobisu, I have to say that sounds like heaven to me! I would be willing to go for number 3 if I was guaranteed no pain...

pip_pip profile image
pip_pip

I've. Had similar time scale probs to you. I was offered a third ablation and it sorted almost everything for me and I have been af free five years now , give or take an episode a year, after many years of misery. Have a third ablation. Definitely. Although my procedures were 5 hours + each I jumped at the offer. Lucky I did.

Phil

blackcat123 profile image
blackcat123 in reply to pip_pip

Thank you pip_pip! That gives me hope! Lovely to hear about a positive outcome. I could easily cope with one or two episodes a year..it would change my life for the better!

Barb1 profile image
Barb1

Who is refusing the GA? I don't think the hospital can, just longer waiting times. Don't take no for an answer. If it is EP, change your EP. All 4 of mine have been done under GA

dedeottie profile image
dedeottie in reply to Barb1

GA is much more expensive and it very much depends on the trust s policies. Here in South Wales there was no chance!

Barb1 profile image
Barb1 in reply to dedeottie

I cannot believe that nobody in S Wales can have an ablation under GA. Please question this.

dedeottie profile image
dedeottie in reply to Barb1

I wont be having any more ablations myself but Im sure there are others in South Wales who will let us know how they go on. X

sportscoach profile image
sportscoach in reply to Barb1

I agree with dedeottie money is a big consideration I have given talks to third year student nurses on AF from a patients prospective with the S Wales trust being referred to by dedeottie I know for a fact as it was a question asked during one of the lectures sedation is preferred because of cost, we don’t appreciate how some of these trusts are really struggling to make ends meet.

blackcat123 profile image
blackcat123

Thank you Barb1, As I said in previous replies, I will definitely bring the subject up again and ask the reasons as to why they won't do it. I don't know if it's hospital protocol or just my EP's. I'm glad I have all this feedback before I see him on Tuesday.

I also had to change hospital because they weren't doing anything for me so my gp asked for a second opinion from St Georges and bingo they've done so much for me. I've only been under them a bout a year they've done an ablation, sleep clinic, blood pressure clinic, genealogy testing I'm so pleased is asked for a second opinion. My previous hospital haven't contacted me in 18 months dispite monthly admissions to resus by ambulance for AFib. Good luck 🤞

Hi Judie,

I was in a similar place only in that I was facing ablation #3 and felt it was a crossroads. Not strongly compelled, yet not feeling good.EP said it was up to me.

I decided to research how I might be able to heal my heart so as to avoid going into AF. I discovered Metabolic Cardiology and long story short, almost 2 months into my exploration, the supplements have vastly improved my quality of life. I’ve shared in other posts what I’ve learned; you might want to search to learn more of the details and/or PM me.

Best wishes to you!

blackcat123 profile image
blackcat123

Update after my appointment. My EP was running very late and I got sent in to see one of his registrars. Wasn't all that happy but difficult to argue when the other doctor called my name out! Anyway, he really wants me try another medication rather than go for an ablation..he seemed to do all he could to put me off having another. Gave me all the blurb about how you can have life threatening and irreversible complications from ablation...which I am already aware of! I finally agreed to try another medication as I have only ever tried flecainide. He has prescribed Dronaderone, and I have read awful reports about it, though some good! It seems there are very few people on it and that makes me think there must be a reason for it.....🙁 I'm very anxious about taking it but need to bite the bullet and try I suppose. AF is becoming very frequent and I can't go on like I am.

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