Ablation Fear, to ablate or medicacte - Atrial Fibrillati...

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Ablation Fear, to ablate or medicacte

rosie321 profile image
43 Replies

Hello, This is my first post and i never expected to be writing on here, so sorry in advance, for this long post! I am 52 year old woman, have never smoked, i do not drink, been vegetarian since the age of 7, am slim, do yoga and pilates and have always considered that i have a very healthy lifestyle. My dad had a severe stroke in February and he did not know that he had AF, I then found out that my uncle and his son also have AF. After years of my intermittent palpitations that were getting worse and worse, I wore a 24 hour monitor. I was diagnosed with AF in June and immediately put on Bisoprolol, which makes me feel tired. I still have daily skipped beats or palpitations and it tends to be worse at night, first thing in the morning, when i am tired ( which is most of the time) and after eating! I was sent to see an EP and he advised that i have an ablation. I have spent 2 months changing my mind about this on a daily basis- should I, shouldn't I? i would like to come off medication but reading about all of the risks with an ablation i am so scared. If I don't ablate, will my AF get worse and become permanent? Will i need stronger medication ? Will having an ablation cause other complications? I have no clue what to do as its such a difficult decision. Any help, advice or opinions will be greatly appreciated.

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rosie321
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43 Replies

Hi rosie,Don,t be afraid of having an ablation,it,s a procedure not an operation.I had mine done August 2013,nothing to it,took about 21/2 hours was awake some of the time but felt nothing.Kept in over night and then sent home.Also that year had a pacemaker fit.Now off all meds and feeling fine.Walk 3to4 miles most days and had no problems so far touch wood.Hope this helps and as Bob will tell you he would rather have an ablation any day than go to the dentist.

rosie321 profile image
rosie321 in reply to

thank you

mikeymike7 profile image
mikeymike7

I had my first big AF attack on top of Ingleborough, thought I was in deep trouble, then spent the next five years avoiding the ablation option. Over this period, my AF got steadily worse so that I had bouts lasting up to 9 days and I was in AF for 21 out of every 28 days.

Flecainide was good for about a year, but I eventually bit the bullet and had a PVI cryoablation a year and a half ago. Transformed my life! Only had 2 AF attacks since and both were early doors and short-lived.

Regrets? You bet - I could have had an ablation 6 months after the Ingleborough incident and still regret not taking the opportunity as I wasted so much time faffing about, scaring myself rigid reading the internet and listening to so much crap from non-specialist medics.

My advice? See an EP ASAP and if the ablation is a viable option, take it!

rosie321 profile image
rosie321 in reply tomikeymike7

thank you

Rellim296 profile image
Rellim296

Opinions are divided on the forum and AF affects us all differently. However, in answer to your questions, it will get worse over time and could become permanent. Yes, you will eventually need stronger medication. It tends, unfortunately, to be a downward path.

Ablation really is the way forward most likely to improve your lot but people are understandably reluctant, and some, who have weight to lose or lifestyles to improve, often opt to go along those routes or try medication or take supplements instead.

The more AF you have, the more you'll get. And the more entrenched it gets, the harder it is to treat.

There is no guarantee that an ablation will improve your situation. Although it can do so, as you know there are very small risks that it could go wrong and a fair chance that it won't be quite as magic as one hoped.

Personally I wish I had gone down the ablation route more swiftly than I did, as I believe it's a nettle well worth grasping and I feel I took too much medication for too long. I've had three ablations with no complications or problems. I still get AF now and then, but I don't need daily rhythm control medication and I feel very fortunate to be as I now am.

rosie321 profile image
rosie321 in reply toRellim296

Thank you , from your comments, I am now clearer that it will get worse and it is good to know that ablation was the route that you took and you no longer need rhythm control medication.

pottypete1 profile image
pottypete1

Don't hesitate ablation is safe and successful for the majority.

Pete

rosie321 profile image
rosie321 in reply topottypete1

As long as i'm in the majority!

pottypete1 profile image
pottypete1 in reply torosie321

Negativity never did anyone any good.

I am in the minority where early success is concerned but I still support ablation as the best option.

Doing nothing certainly is less likely to bring a good resolution.

I hope the support if the forum members helps you make a decision.

Pete

rosie321 profile image
rosie321 in reply topottypete1

Thank you, it probably sounds negative but im just scared to be in the minority!

pottypete1 profile image
pottypete1 in reply torosie321

Not at all - in fact perfectly understandable.

Whenever I am in AF I am scared I will stay in AF for the rest of my life, despite the fact that for 25 years I have been in and out of AF regularly and every time I have reverted to NSR.

Pete

Finvola profile image
Finvola

Hello Rosie and welcome to our world - and it's safe to say that none of us wants to be here. It's a horrible shock to discover that we have 'a heart condition' and need to cope with it on a daily basis.

I have been taking rate and rhythm control drugs since diagnosis three years ago and have no AF but the drugs do have some side effects - fortunately mine are, so far, minimal. But - I am 20 years older than you and at your young age, if an EP advised ablation, I'd jump at it - even though I would be scared too.

AF is normally progressive and according to my EP will progress even though the drugs are suppressing symptoms - he says probably because of natural ageing. The rate of such progression is unknown as it seems to be very specific to an individual. I am assuming my drug load will increase as my PAF progresses, in which case I may seek intervention - if I'm not too old by then.

Regarding risks of ablation - there is an overall 5 per cent risk of serious complication but such risks are dependent on many factors over which we have minimal control. One we can control is to entrust our hearts to the best EP we can find - with a good record of performing AF ablations in a good hospital.

Best wishes to you in making your decision - ask, ask and ask all questions you can think of when you next see your EP.

rosie321 profile image
rosie321 in reply toFinvola

Thank you, i agree- ask, ask, ask so today i booked a second appointment with my EP and have a list of questions at the ready.

BobD profile image
BobDVolunteer

As others have said , ablation stands the best chance of giving you a life free of meds (apart from anticoagulants of course) and much improved quality of life. As another person wrote recently most of the risks described are theoretical rather than real and from earlier days before EPs had so much experience. They are also explained as much to protect the doctors and NHS from law suits in these litigaous times. Do understand , however, that ablation is part of on going treatment and may need to be repeated at some point in the future. Many people find relief after one procedure but others may need two or even three.

I have also pointed out on many occasions that reading posts here about ablation can give a one sided view since only those who have not had success tend to remain here. Those for whom AF has been terminated seldom hang around for long. Nice to see some good reports above.

Bob

rosie321 profile image
rosie321 in reply toBobD

Thank you Bob, ablation seems to get a thumbs up on here! Although I am still in 2 minds!

Had my ablation in 2005 and it worked straight away and I came off all drugs except anticoagulants, which was great because the drugs were doing my head in. I got a bit of AF back 8 years later but only a tad. The ablation was no trouble at all but like you I was worried, who wouldn't be?

I had a second a few years back to nip what had returned in the bud. But it had to be aborted for other reasons. Hope to be offereda third as and when but other drugs are working well, so no problems at the moment.

Koll

rosie321 profile image
rosie321 in reply to

thank you

Jonathan_C profile image
Jonathan_C

You can find very convincing reasons and stories not to have an ablation if you look for them - but you can find many more and more convincing positive reasons and stories if you look for them.

I am booked for an ablation in January and have spoken to two EPs about this. The stats suggest a success rate of about 63%, both mentioned 1 in 200 chances of certain risks and both said to me that at worst I will be where I am now if it fails. "Now" is in rhythm but on 2x tambocor and a beta blocker - which I am keen to get off.

rosie321 profile image
rosie321 in reply toJonathan_C

Thats the problem, depending on what i read changes my decision!

rothwell profile image
rothwell

If ablation is preventing afib attacks then why take anticoagulants? I have had paroxysmal afib for 3 years with very occasional awareness of heartbeat...I take bisoprolol but efuse anticoagulants. I wear a fitbit and check my heart rate many times a day to ensure rate and rhythm . YesI am aware of the stroke threat but the threat of an internal bleed is just as strong if on anticoagulants. So why keep on taking them if heart structure iis without problem and ablation has stopped the afib ?

PeterWh profile image
PeterWh in reply torothwell

No. Overall the risk of a stroke is many times higher than the risk of a bleed obviously the exception proves the rule and a few people are more at risk from a bleed.

PeterWh profile image
PeterWh in reply torothwell

How do you know that you aren't having asymptomatic AF episodes?

rothwell profile image
rothwell in reply toPeterWh

Mainly because I don't know what an asymptomatic episose is....what is it? I check my heart rate many times a day with my fitbit and it seems OK . So would an 'asymptomatic' episode not show up? Thanks for responding and please explain.

PeterWh profile image
PeterWh in reply torothwell

A Fitbit may not be accurate if in AF or pick up AF.

Asymptomatic is that the person does not feel any symptoms at the time it is happening. However there can be symptoms or effects present. For instance that heart rate may go up but not sufficiently for the person to feel it.

An AF episode can last from anything such as seconds (say 30) to minutes to hours to days. Particularly if you are doing things your heart rate may be elevated and therefore you don't feel it. There are of course many other symptoms over and above increased heart rate.

Barb1 profile image
Barb1

If AF is left untreated there is a chance that it can cause Cardiomyopathy in the heart. That US something else you need to take into consideration

rosie321 profile image
rosie321 in reply toBarb1

Hi, this is new to me, what is this?

Barb1 profile image
Barb1 in reply torosie321

Untreated AF means that the heart is under a lot of strain and its muscles can thicken, the heart can become enlarged and cause it not to beat as effectively. The good news is that all that can be reversed when back in Sinus Rhythm.

rosie321 profile image
rosie321 in reply toBarb1

Thank you for the information .

Sarah57 profile image
Sarah57

Hi Rosie

I am 58 and had my ablation in April. Like you it is a family history as do yoga, Pilates, no smoke,drink , eat well, slim etc etc but after 18years of PAF and pill in the pocket, mine got worse over last few years then I met an EP who suggested an ablation. I thought about it for 4 months, did lots of research ,then bit the bullet and did it! Off all meds, no AF and gaining the quality of life back I once had. Stand alone AF has good results form an Ablation so your choice, but I don't regret it at all!

Do be aware though, it does take time to recover from and you need to listen to your body, so don't expect to feel really " healed" for at least 6 months, although of course everyone is different!

Good luck and I have found really practicing Mindfullness did help to get me in the zone!,

Best wishes

Sarah

rosie321 profile image
rosie321 in reply toSarah57

Hi Sarah, thank you for your reply, it is good to hear that you also have a similar lifestyle to me and also have AF. My EP suggested flecanide, is that the "pill in the pocket"? Do you take that as needed? So far i have been considering ablation for 2 months and today booked another appointment with my EP to ask more questions. It feels like a big decision and my uncle and cousin have both had ablations and think i'm a wuss! My fear is keeping me in indecision.

Thank you again

Sarah57 profile image
Sarah57 in reply torosie321

Hi again Rosie

I was given Soltalol 20 years ago at just 37 , and used it successfully for about 18years before the menopause changed things I reckon! My AF became more often and I rather "ostrich" like just started more Soltalol on a regular basis although a few years ago they said Flecanide would be much more effect so it sounds the right PIP for modern treatment. I live in Brighton and after 4 months of indesicion, I got offered a place on a Trial called The Avatar Trial. This is going on around the country and it is comparing succes with Ablation verse drug therapy. Goggle it if it helps with more information. You really do come to AF at the right time as advances in Ablation techniques have improved greatly!! (Not a lot of consolation I know...) I left it 5 months before attempting real exercise again bit my Yoga and Pilates is so much better as I don't trip into AF lying down, and I can brisk walk for a couple of miles 5, 6, times a week which I had become unable to do. It is totally for you to find the right time, or decide that PIp works well for you, but in my experience AF does progress over time. I think I waited too long and experienced a couple of pretty miserable years before making my decision. Having said that, maybe April was the right time for me?

Keep in touch if you would like too.

Sarah x

P.s. I have returned to work, but decided to cut right down,(I am a Primary school teacher) and now doing just two days as I rocket a long towards retirement! Second best decision I have made ! Good luck. Oh also maybe get on "the list" (I did that as soon as I was offered it) as you still don't have to go ahead, but with NHS as it is, you still might have a long wait?

rosie321 profile image
rosie321 in reply toSarah57

Thank you Sarah, that's all so helpful. Yes my name is down on the list and i have made another appointment in November to see my EP again to as more questions!!! I will look up the avatar trial and have a read. I will keep in touch. Thanks again x

Polski profile image
Polski

Your diet may not be as healthy as you think. Vegetables do not contain all the minerals etc that they would have done in the past, so it is easy for us (vegetarian or not), over years, to become short on certain minerals and vitamins etc. The fact that you have this problem suggests that your heart is missing something(s) important, possibly magnesium (research previous posts on here about testing for, and taking, magnesium).

I found that taking L-carnitine made a big difference to me (the best food sources of this are not vegetarian) - see 'The Sinatra Solution - Metabolic cardiology' A good multi-vit-and-mineral for three months could also help, as all these things work together.

So there are things you can do by way of supplements/diet etc (see a good alternative nutritionist) which could lessen your symptoms, and will increase the success of an ablation when you do decide to have one. (See also drjohnday.com and also drjohnm.org)

rosie321 profile image
rosie321 in reply toPolski

Thank you so much for your suggestions, I will look into the multi vitamins and drjohnday.

rosie321 profile image
rosie321

I was due to go tomorrow for an appointment to get anticoagulants pre ablation, as I had put myself down on the list to be ablated. Today I cancelled the appointment for tomorrow and made another appointment with my EP to ask MORE questions. When I wore the 24 hour heart monitor it showed that my heart was out of rhythm from several seconds to 3 hours and i feel the AF daily, but today i have only had few skipped beats, so my indecision continues......

I'm 4 hours post my ablation, please don't feel scared of the procedure, the worst part was the cannula in hand, the rest just a dream👍👍👍

PeterWh profile image
PeterWh in reply to

Everyone told you it would be!!!

rosie321 profile image
rosie321 in reply to

Hi juggsy75, how are you doing now? At what stage of having AF did you decide on an ablation? Were you on medication for AF? I am still undecided and going back to see my EP in 3 weeks to ask more questions.

in reply torosie321

Hi Rosie, I was 18 months into AF, only had 3 episodes and using bisoprolol as PIP, I wanted to try to nip it in the bid early if I could

rosie321 profile image
rosie321 in reply to

Hi juggsy75, thank you, i have daily palpitations and skipped beats and been on bisoprolol since June. I am seeing my EP again on 18th November to ask more questions. How do you feel now and have you stopped all medication?

in reply torosie321

Still early days as I'm only just under 2 weeks since the ablation, still get the odd missed beat but they're subsiding in numbers day by day,

As for meds I have to take 2.5mg bisoprolol, lansoprazole and 5mg apixaban daily for 6 weeks until my follow up, I believe as long as my 48 hour monitor dosent show any breakthrough episodes I'll be taken off the meds, at least that's what I was told however I'll go with what my EP recommends, my chads/vasc score at present is 0

rosie321 profile image
rosie321 in reply to

Hi Juggsy75, i hope you are are the mend, sounds good so far. Let me know how you are doing and how your follow up goes. Good luck.

Easternmost profile image
Easternmost

Hi Rosie,

Did you have an ablation in the end?

Our ‘profile’ sounds very similar and I am due for an ablation in a week. I just wondered how you were doing?

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