Ablation: Saw my ep today at the royal... - Atrial Fibrillati...

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Ablation

barnes12 profile image
31 Replies

Saw my ep today at the royal brompton dr jonathan clague he said the medication is not working and he wants me to have a ablation I'm not keen and asked if I could try other medication he said no I was diagnosed over two years ago with paf I now feel worried sick stressed and terrified I just can't do this I told him that I am not having a toe he said he will do the job and put me on his list this damm af I hate it and the affect its had on me karen

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barnes12 profile image
barnes12
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31 Replies
Japaholic profile image
Japaholic

You have to fight it, don't give up and let it win. Have courage, overcome. It can be done and you have a good EP.

Try acupuncture for relaxation it works wonders for me

barnes12 profile image
barnes12 in reply to Japaholic

Thanks

Therealsue profile image
Therealsue

Hi Karen . I think our hatred of AF is what binds us all together! I'm sorry to hear that you're not keen to have an ablation. When I was first diagnosed, I was happy just to deal with it in my own way, but as it got worse - and as I understand it, AF is likely to get worse - and more intrusive into my life, I opted for ablation. I was naturally anxious beforehand, but I had it done under sedation and didn't feel a thing and certainly don't remember anything about it. I didn't have a toe as I suppose my consultant thought it wasn't necessary in my case, but with the sedation, I doubt that I would have felt that either. I was offered a GA but decided that I would recover more quickly from sedation and for me, that choice was the right one. Many on here do have a GA though. I had my ablation last May (not long to my one year anniversary) and other than a couple of episodes within the first two weeks post ablation, I've been AF free since. Anyway, if I had to have another ablation, I would certainly do so. Let us know how you get on. Sue.

barnes12 profile image
barnes12 in reply to Therealsue

Thanks sue

BobD profile image
BobDVolunteer

Hi Karen,. Jonathan is one of the best and from my experience always uses GA so nothing to worry about. You need to find a strategy to overcome this panic so maybe talk to your GP about CBT or hypnosis. It really is a no brainer if you ever want to feel normal again. I'd rather have an ablation than go to the dentist.

Bob

froggy4x4 profile image
froggy4x4 in reply to BobD

Agree with Bob.

barnes12 profile image
barnes12 in reply to BobD

Thank you bob

I've had two and would have a third without thinking about it much. Both were no problem at all and not much different to going to the dentist.

The first one I had under sedation and I was concerned about it because I'd be awake. In fact, although it took hours, time flew by, I felt very relaxed because of the drugs I assume, and it was absolutely fascinating. Second one I had under GA, I walked into the room, lay on the table, and woke up in my room. I went home the same day. They didn't ablate on the 2nd one because my AF had disappeared. First one kept me clear of AF and all drugs except anti-coags for 8+ years.

Personally I felt great after both and was back at work in days, nothing heavy though.

So many people have come on here and said how worried they are, then posted afterwards saying it was not a problem.

Hope it works as well as mine did.

Koll

PS. I had severe 24/7 AF so with the first one so guess they will have done a lot of ablating. I felt tight in the chest for about a week or two but I couldn't feel my heart at all :-) .

barnes12 profile image
barnes12 in reply to

Thank you koll

SuzieA profile image
SuzieA

I agree with all of the above. hopr you can overcome your fear, it will be worth it x

barnes12 profile image
barnes12 in reply to SuzieA

Thank you suzie

Jason1971 profile image
Jason1971

Hi barnes12, if the EP says that no other medication is going to work for you, then I would listen. One thing we know about AF drugs is that they haven't really come on much for a good while. Some people are very lucky and the meds work a treat and some like you & me they don't work so good, or you have bad side effects. When my AF started, there was no way I wanted an ablation. The meds worked a treat and I was happy taking tablets. Unfortunately I got some side effects of one of the drugs and the others didn't work so well. My EP said to me if I wanted a chance of getting my life back to normal and a better quality of life, then ablation was my next best option.

You don't say how your AF affects you. Does it make you ill, or stop you doing things? If so then an ablation has a very good chance of correcting this. If your AF is asymptomatic and you really don't want an ablation, then that is your choice. There are people on this forum who are in permanent AF who get by taking a good anticoagulant and heart rate drugs. I would have a look back over ablation posts on the forum and listen to the people who have responded in the previous posts. I'm sure it will put your mind at rest.

Good luck with what ever you choose.

barnes12 profile image
barnes12 in reply to Jason1971

Thanks jason

jennydog profile image
jennydog

Karen, I agree with all the above posts. I had my ablation last August. I had GA but no TOE. We all understand your alarm about it and the awfulness of AF. I remember how it affected every minute of every day.

If there are any questions or things that you need to discuss then please contact me privately.

Remember, no one would unnecessaryily volunteer for an ablation but isn't so bad that it deters people like Bob from having it done 3 times.

barnes12 profile image
barnes12 in reply to jennydog

Thank you so much jenny

Rellim296 profile image
Rellim296

You have a lot to gain from having an ablation and being brave and doing something that frightens you may well be as satisfying as improving your physical state. We've all been stressed and worried beforehand but you would miss out big time if you let your terror take over. What exactly scares you? That it may hurt or that it might go wrong or that it won't be effective?

barnes12 profile image
barnes12 in reply to Rellim296

Thank you for your reply everything I guess scares me

Rellim296 profile image
Rellim296 in reply to barnes12

I understand that. But I found the most painful bit was the INR test beforehand which was in the thumb for some reason. Ablation is a procedure with a pretty high success rate, depending on your circumstances - my EP offered me a 70% likelihood of getting rid of AF. As he has offered it to you, your EP clearly thinks it could be of benefit to you.

Do try to balance the many positives on one hand with your worries on the other. Very few of us have found fears to have been justified. That doesn't mean they aren't very real beforehand, but the nettle you grasp might not sting as much as you expect. You risk missing out on an opportunity to turn your life around.

I would add that I regret letting my AF and my reaction to medication develop and wish I had had last year's ablation a year earlier.

barnes12 profile image
barnes12 in reply to Rellim296

Thanks again

davegm profile image
davegm

Hi Karen

I do agree with the above posts and would advise that you consider having the

ablation offered.

I fully understand your feelings that AF is ruining your life and your hatred of it. A successful ablation can eliminate this AF from your life for a long time - if not permanently.

I have posted previously on here my experince of AF and I don't want to bore everyone again but will briefly recap.

I first experienced paroxmyal AF more than 20 years ago in my early forties. The episodes were unpredictable and debilitating and I felt it was literally ruining my life. The various drugs tried appeared to be either fairly useless or had the opposite effect of causing more AF. Ablation was a fairly new in those days but despite being afraid of hospital proceedures I actively sought a referral to an EP (the only one in the Merseyside area at the time) who agreed to an ablation.

I felt after 5 years that it was better to try anything than to live with the AF episodes.

The result was 15 years AF free when I didn't give this demon a second thought and carried on a very active life. This included riding fast motorcycles around Europe which I wouldn't have even contemplated if I thought an AF episode could come on at the drop of a hat.

Ablation may not necessarily be a permanent fix as in my case I had a return of AF symptoms about 18 months ago and had a second ablation without hesitation last June. This seems to have done the trick so far.

As for the proceedure last june I had a GA ( no TOE carried out) and to be honest you wont know anything about it. It really isn't anythng to worry about. You will fee sore after it and may get some symptoms in the first 6 months.

I hope my experience will give you some food for thought.

You can have a very good result and get rid of this AF you hate so much.

It's obviously your decision.

All the very best

Dave

barnes12 profile image
barnes12 in reply to davegm

Thank you dave

Mike11 profile image
Mike11

Having an ablation was the best move I ever made. I now feel 15 years younger and have got my life back. Of course I still panic whenever my heart makes the odd misbeat, but that's due to having had AF and so being so hyper-sensitive to it.

So please do go ahead. You won't regret it.

bridget54 profile image
bridget54

Oh Karen. I know exactly how you feel . Read my posts I too was terrified of having it done . I had an EP study and ablation done on Tuesday. Im now sitting at home eating a baconsandwich drinking a cup of coffee reading about other peoples terror. They are all so professional when youre there you somehow just go with whatever they say. I was treated so well and i had my ablation under sedation. I wont lie following the ablation which flew by ( 3 hours in fact ) I have experienced a bit of chest pain since but Im told thats normal for a few days after all the fiddling they do in the heart.BUT if this has helped stop Af and in my case SVT attacks then it will have been worth it. I want to get off the medication I want to fly abroad without worrying Ill have an attack I want to have a glass of wine every now and again I want to dance and I want to go to bed at night and not worry every night that Im going to be woken up by my AF. It is terrifying Karen but the hope it gives us outweighs it all. This website is frightening sometimes and other times its very informative. You will get to a point where you decide. Even 1 hour before I had it done my EP told me I could leave it if I choose to but I know how I feel in AF and I tried to remember that .I wish you well and youll be ok xxx

barnes12 profile image
barnes12 in reply to bridget54

Thank you bridget54

Firstly, like you I am dead against ablation but if and when it is necessary Jonathan Clague is my top choice....half the battle is already over as you have found one of the best EPs.

Secondly, if you are stable and able, I would explore the full spectrum of lifestyle changes incl supplements first, if you have not already been there. But caution here, it is very hard work, expensive and mentally draining with no guarantee of success.

My reason for delay is technology is rapid and any postponement without significant deterioation is likely to be beneficial.

Twelve months ago 2 cardiologists and an EP told me, after a AF hotspot of 9 episodes in a month that Ablation was best. I have Vagally mediated Lone PAF. I persuaded the cardio to double my Flecainide to 200mg/day instead and I have had 12 months trouble free.

Summary: It's a team effort between you, the medics and alternative practitioners. Which route depends on your individual condition, your interest in alternatives and your patience. Good Luck!!

FyldeWhite profile image
FyldeWhite

Hi Karen, I had an ablation in Feb and although there was no issues I have a vague memory of fighting the TOE I think they must have upped the anaesthetic as I don't really have much memory of the op itself and that was under local.

Unfortunately my ablation wasn't 100% successful, which my EP told me afterwards (I have an awkward heart apparently) and I now have a flutter and have to go in for another attempt, this time the EP is going to GA me because of my reaction to the TOE which made his job harder.

I'm not trying to put you off, just trying to show there are options even once they've started. Personally I'm happy to have them attempt another ablation as I don't want to walk at a snails pace for the rest of my life and maybe as Bridget says dance a little 😃 and I will have GA next time to give the EP the best chance.

barnes12 profile image
barnes12 in reply to FyldeWhite

Thanks fyldewhite

christine147 profile image
christine147

Excuse my ignorance but what is a toe. Good luck I too would feel the same as you but reading the posts clearly it has been very positive for many.

barnes12 profile image
barnes12 in reply to christine147

Laymans terms it a tiny camera that is put down your throat to check for clots

mikeymike7 profile image
mikeymike7

Hi Karen,

I tried anything for FIVE years to try to avoid the ablation. What a waste of time! I had the ablation in January and do not regret it at all. If the AF returns, which it may, I'll be first in the queue for the second one! It gives you hope!

barnes12 profile image
barnes12 in reply to mikeymike7

Thanks mikeymike7

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