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Ablate or medicate that is the question!

Pigleywigley profile image
21 Replies

So I was diagnosed July 2020. Had approx 12 episodes where I don’t self convert without PIP up to March 2021. Then nothing (sssshhhh 🤭) AFIb free - in remission since March. Made lots of lifestyle changes (some chocolate & wine slipped back in) but changes still in place.

Been referred from my local hospital to specialist teaching hospital. My consultant has ‘all 🦆 in a row’ ready for the specialists to do surgical ablation, surgical because of abnormal congenital heart defect. So can’t have catheter. Appmt has come through. Eeek 😨

I’m interested in the experience of others who have gone into remission?!

My goal is medication 💊 free and excellent quality of life. They are offering dronederone or surgical ablate. Surgical ablate says 60% chance (for me of success). Regardless of what it says about dronederone im not interested in taking it.

So why either if I’m in remission 🤷🏼‍♀️ I’ve read all the books John Day & understand fully ablate early! But if I have no symptoms……..

Oh wise ones v interested in your views & similar experiences. 🥰

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Pigleywigley profile image
Pigleywigley
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21 Replies
EngMac profile image
EngMac

Some chiropractors think AF is caused by neck and spine issues. If by chance you changed something that could affect these, then maybe you miraculously found your temporary or permanent cure or found it by some other means. Considering the risks presented with drugs and surgery, I think I would postpone any of these for now. I assume they can be an option in the future. Most heart doctors don't think there is a cure, so they may encourage you to continue with the operation since this is what they do. Would you cross a highway if you had a 66% chance of making it to the other side and there is no urgent reason to do it today? Or, if you do make it, you could be worse off than you are now.

Apparently humans are poor at assessing risks which may be evidenced by people who choose not to get vaccinated for Covid 19.

Remember it is your "life" ; and, more importantly, only your decision.

Pigleywigley profile image
Pigleywigley in reply toEngMac

Now that’s interesting! Two shoulder fractures and dislocations right shoulder……. The body is fascinating 🤨 (& infuriating!)

In answer to your very thought provoking question! No I wouldn’t.

😱

CDreamer profile image
CDreamer

It’s very difficult to comment on another’s circumstances- all I can do is imagine how I would be in your position, based on my own experience and limited knowledge but I find myself echoing EngMac’s comments.

If Lifestyle has improved your QOL & you haven’t had episodes since March I think I would want a higher chance of success than 60% before I agreed to a surgical procedure.

I would want to know why’s ands wherefores of why it was recommended and why now? If it’s just about waiting list I would want to know what would happen if I wanted to delay to see if AF returned. Would I have another shot at this procedure if I said no now?

Much might depend upon just how symptomatic you were with your episodes and you also need to take into account any risk factors for you that continuing AF episodes might lead to?

I wouldn’t want to take the drugs on a daily basis - period. But that’s based on my experience of drugs - others seem to tolerate them very well.

It has to be your decision so maybe ask for appointment to discuss your concerns before making a decision?

Pigleywigley profile image
Pigleywigley in reply toCDreamer

Thanks CD I don’t tolerate drugs well and not only that the side effects can be worse than the AF!

jeanjeannie50 profile image
jeanjeannie50

I agree totally with the two excellent responses you've already had. In your situation I wouldn't have an ablation right now. I've discovered that a healthy diet is the way to go. Do you take any form of supplements?

Let us know how you get on please

Jean

Pigleywigley profile image
Pigleywigley in reply tojeanjeannie50

Magnesium taurate Jean. The ones recommended by Dr Gupta. Other than that relatively balanced diet with a probiotic drink.

secondtry profile image
secondtry

My normal reaction would be to turn down the ablation and use that decision as a driver to double down on the Lifestyle changes over years not months.

However, due to your heart defect it sounds like your drug options may be limited to those with more side effects. So, you may wish to put your cards on the table with your consultant and ask for the appointment to be rescheduled a further 6 months ahead to give the lifestyle chances a limited window to prove themselves.

Whatever the future holds don't be beaten up by others or yourself on your decision as using Engmacs analogy of crossing the road, the alternative may have resulted in a more serious accident.

Pigleywigley profile image
Pigleywigley in reply tosecondtry

Agree! I think I’m ready to press postpone for now & have all my questions ready 👍

Hi! Just to try to shed some light on arrhythmia in general, so it might help. It is not like many other disease - you contract it and have to fight it. If you are treated with correct medication, you get healthy again and can almost forget about it. A single bout of arrhythmia can show that you are prone to it. It is quite individual what kind of arrhythmia you will have as the first and how long it will last. Personally, I had at the age of 17 what I now classify as sinus tachy and than had no arrhythmia for about 30 years, at least not that I was aware of. Than had another bout (I suspect that it might have been ventricular tachy, not sure), also for a single day, than again nothing for years, until I was 55.

The rule is that there are no rules - your being AF free from March is very short period of time to be able to say where you are now. You may have pause for years (you look youngish in the photo), but may have some kind of arrhythmia tomorrow, and it may be any kind of arrhythmia. People switch between very different kinds of arrhythmia, so concentrating only on AF would be wrong.

What can be done...? People concentrate mostly on the diet since it is the most "visible" interaction with the surrounding world, but if the chiropractors from ENGMAC's comment are right, than the physical activity may be the main disturbing factor. In my opinion, physical activity IS the most influencing and it involves all the activity, including sex, lol. What for the healthy people is a "normal" everyday activity (climbing the stairs, running, lifting grandchildren, standing in one place for a long time, ...) can be arrhythmia provoking for us here. So, be careful about your physical activity, avoid well known food triggers, add some of the supplements, avoid stress as much as you can and...you may need no medication or intervention. Fingers crossed!

Pigleywigley profile image
Pigleywigley in reply to

I do exercise daily but nothing to extreme as I keep my heart rate in a safe range. My heart has never beat normally. From the day I was born, abnormal is normal to me but AF episodes when they came were long and unpleasant! I’m 48 so the drug factors feature heavily for me in not taking them!

in reply toPigleywigley

You may have some heart abnormality, but it was doing the job quite well until now - you are 48 after all... Be very careful with the exercise and physical activity. The intensity and the HR do matter, but some of the exercise may cause trouble. People complained about pushing the car for a jump-start, cleaning the snow from the driveway and many more. Yoga, for instance, is the mine-field.

Singwell profile image
Singwell

You have lone AF in terms of non heart factors I believe? Also younger than many here. If Dr Rupy of Drs. Kitchen Podcast can be in remission for years, why can't you? That would be my thinking. Well done you!!

Pigleywigley profile image
Pigleywigley in reply toSingwell

Well sing well that’s interesting I must look them up! Not quite sure what you mean re lone AF but I have an abnormal heart structure was born with an atrial septal defect - large hole in wall & closed with an amplatzer device 20 year ago.

Megams profile image
Megams

~I had ASD closure late 1980's when in early 30's - told I had faulty electrical circuitry and that there was nothing that could be done back then so lived with this until I developed auto-immune issue 6 years ago.PAF is part of my life now and told by EP that it is not connected with my previous ASD. This came as surprise as always led to believe my "faulty T waves" were part of my genetic defect.

Presently on Metoprolol + Rivaroxaban - both have awful side effects which knock me sideways but alternative i.e stroke not an option.

Have been considering ablation but presently reluctant due to other circumstances.....

I appreciate your concern on where to from here but being 8 months free I would be inclined to push your window of opportunity out a bit longer.

Good luck with your decision :) ~

Pigleywigley profile image
Pigleywigley in reply toMegams

Hey Megams fellow ASD here! I had my closed age 28, 20 years ago! With amplatzer. Interesting 🤔 I’m led to believe mine probably is linked!!

Megams profile image
Megams in reply toPigleywigley

~Lovely to connect Pigleywigley - interestingly enough my Cardiologist said it was connected.When referred to EP was told it wasn't........

Please stay in touch - will be lovely to follow your journey.

My PAF not sorted - I just go one day @ a time as covid/delta active in Auckland NZ presently and still in lockdown.

Warmest wishes in meantime ~ :) :)

Pigleywigley profile image
Pigleywigley in reply toMegams

Just read your story! Wow 🤩 you have so much going on. I looked up PMR v interesting about the inflammatory response. AF can be linked to an inflammatory response & interestingly I have major tendon/Achilles issues & swelling of the heel & ankle - haglunds. You do wonder don’t you how all of this links up! 🤷🏼‍♀️

Megams profile image
Megams in reply toPigleywigley

~I juggle a few balls Pigleywigley & always searching for answers - we need to be our own best advocate.Been trying to reduce steriods by only .50mg which is miniscule since Sept -my system extremely sensitive.

Never felt so bad, heart certainly not happy nor the rest of the body so back to the same ole dose .........

Tendons/ligaments issues always there - gentle stretches each day help.

They say genetics play a part with PMR, stress + other factors.

Onwards & upwards :)

wilsond profile image
wilsond

Echo the above comments . I have had the same dilemma I have AFib and flutter and a weird aortic valve.I have been diagnosed since 2013 and have managed , eventually,to reach a stable state 85-95,% of the time.

I like you made big changes to my lifestyle.

I do also take a slow release rythym med and a tiny dose of rate control,which I can up if I get an episode.

Your circumstances for drugs may differ because of your heart structure. Incidentally my near neighbour has been on dronedarone for 5 years and sings it's praises,although I too would be anxious about taking it ,( and amiadarone) as I've seen several comments on side effects here.

I too am on the ablation list at a teaching hospital,but have bought time to consider my options rather dramatically by breaking my shoulder! I will remain on medically deferred list for now until I get my next clinic appointment.

I think if I were you it would be an idea to email your consultant if possible or contact them via their secretary and ask for a telephone appointment to discuss your options and to ask the questions you have put here.

I was told in recent weeks from my cardiologist ( I am under an EP for arrthymia and Cardio for valve) that ablation is absolutely for quality of life and not therapeutic. It's for those with terribly symptomatic AFib that respond poorly to other interventions.

All the best to you x

Pigleywigley profile image
Pigleywigley in reply towilsond

Hi Wil got an Appmt Dec so will discuss all there! I’m thinking a delay but I would literally have it in a ‘heartbeat’ 😉 over drugs any day. Hope that shoulder ok!

wilsond profile image
wilsond in reply toPigleywigley

Getting there thank you ! Ribs still sore though! Fell doing some gardening.. dangerous sport !

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