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Atrial Fibrillation Support

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It seems to me that most people have gone in for Ablation of one sort or another. Is it just me or does everyone get it done?

35 Replies

I have been diagnosed with AFIB in and out for about 8 months and trying to learn all the facts. This Covid has thrown a wrench into the medical care system in Canada and I'm sure world wide. So, getting to talk to these doctors is not easy. I talked on the phone with my Cardiologist today but he wouldn't even give me my blood and urine test results until the end of the month when my next phone appointment is scheduled. Said he was too busy.

He has never once mentioned Ablation to me. Neither did the emerg cardio at the hospital. Thank you in advance for your kind input. Thank you to all that take the time to respond to others. God Bless.

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35 Replies
BobD profile image
BobDVolunteer

The important thing to understand is that there is no cure for AF and any and all treatment is only for symptom control and therefor quality of life (QOL) . Ablation can be part of that ongoing treatment but is not the be all and end all . Here in UK it is common for patients to be tried on a number of different drug regimes even before ablation is considered. There is no right and wrong approach with either rate or rhythm control being tried. Life style changes are also extremely important and their benefit can not be underestimated.

If the ablation route is considered then it is not uncommon that it will need repeating sometimes many times. I had three before my AF was terminated but after some eleven years other arrhythmias arrived in my life which have not been so easy to deal with and are ongoing. Was it worth it? Yes for me it was.

in reply toBobD

Thank you Bob for your usual informative and clear explanations.

Paulbounce profile image
Paulbounce

There's normally a 'route' they follow Mrhermyl. In the UK - but of course it might be different in Candada.

From my experience a CV is the first port of call to return you to sinus. It sounds frighting but I can assure you it's not. After that you may be given another one (and asuming you are back in sinus) it shows an alblation is more likely to be succussful for you.

The next step (for me) was a third CV with med's (flec) to help keep me in sinus - it's working wonders after about 15 months.

When / if it stops working an ablation might be on the cards. The fact I can stay in sinus this long suggests it could well work.

I think it's unlikely an ablation will be suggested at this stage for you. However this is a matter to discuss with your cardio.

One other thing to consider - Google 'ablation mapping'. Work though the usual crap on the internet and check out trusted sites. Technics are improving all the time and it's worth an hour of your time to research it.

Good luck and enjoy your day.

Paul

in reply toPaulbounce

Thank you Paul. Lots of things seem different over here.

PlanetaryKim profile image
PlanetaryKim

I don't know the answer to your question, Mrhermyl. But I too am in Canada. And another Canadian member posted this comment on a post of mine earlier today, saying that BC in particular (and maybe all of Canada?) is very slow to move AF patients to ablation, instead treating with drugs for a long time: healthunlocked.com/afassoci...

in reply toPlanetaryKim

PlanetaryKim, I agree with you. It sure seems that way to me in the 8 months I've been dealing with it. It has been mentioned once.

Thank you for your kind input.

secondtry profile image
secondtry

My chosen route is to postpone an ablation until my QOL is so poor that the decision is made for me. Until then I maximise lifestyle changes on all fronts e.g. on breathing see James Nestor's new book Breathe) and hope less invasive procedures emerge e.g. Vagus Nerve stimulation implant

Caro57 profile image
Caro57

Hello

First - if you have a general practitioner (I don't know the Canadian system) they may have access to your blood results.

Second my hubby has had AF for about 12 years. He had numerous cardioversions and ablations before arriving at a pacemaker with central node ablation so he is now pacemaker dependent. It has controlled the AF; of course, it is still going on in the upper chambers of the heart - but he feels much better.

in reply toCaro57

Thank you. Yes I did get my very general overview of my test results through my GP.

I'll still have to wait for the Cardiologist to get the full story. Not right in my books.

I too was wondering about the pacemaker route. I'll have to explore it.

Thanks

Caro57 profile image
Caro57 in reply to

I should make it clear he ended up with a pacemaker because the cardioversions and ablations didn’t stop the AF for any length of time - it wasn’t the first choice.

I hope all goes well, so frustrating in these difficult times

in reply toCaro57

I don't particularly like the idea of scarring the heart and in most cases it doesn't work for long as with your husband. So why go that route from the start. Yes, it would be good if it worked.

Finvola profile image
Finvola

I’ve had PAF for about 13 or 14 years, diagnosed 7 years ago and symptoms treated successfully with Flecainide since then. Both my cardiologist and EP advised against ablation at the moment - I am stable on Flec, it appears to agree with me, my age(!!!!) and if things change I can opt for ablation. The age reason was not given to me but to my GP - 😂😂

I’m in Northern Ireland and I’m happy with this option.

in reply toFinvola

Thank you, Good info to know.

No, we don't all get it done.

I was diagnosed in 1986. My doctors actually cautioned against it when it first came out and now, since it often takes repeated ablations, my current cardiologist does not recommend them.

Also, at least in the US, some insurers will not cover multiple trys. It can easily cost $25,000 to $30,000 in the US.

in reply to

Thank you. Personally I'm of the same mind. I see that some have gone through it multiple times and yes at sufficient risk to worry me.

Here in Canada I don't know how the insurance looks at this.

Madscientist16 profile image
Madscientist16

I am in the US. Upon my diagnosis of AF I was just offered meds, and when it would come back, the doctors would just up the dosage or just throw another med on top. I ASKED for my ablation. I could not stand how awful the drugs made me feel and they were not even working...After 16 months with AF, I had a cryo-balloon ablation and have been AF free since.

in reply toMadscientist16

Glad it has worked out for you. Why is it in America and Canada you have to ask for it?

The sad thing I see on here is that so many fail and need another and yet another procedure.

Some have had numerous procedures then end up with a pacemaker.

Madscientist16 profile image
Madscientist16 in reply to

In the US, I think we have to ask for it because the insurance companies don't want to have to pay for it. Ii is too bad that ablations are not more successful. I believe it has a lot to due with many different factors such as: age of the patient, how long they have had AF, individual anatomy especially of the pulmonary veins, lifestyle of the patient, the type of procedure being done (cryo vs RF), hospital resources and talent of the EP. Just like AF itself, ablation is as individual as the patient. I am happy I had mine and would do it again in a heartbeat. Pun intended. :)

cuore profile image
cuore

You must live in Ontario , not B.C. , to have been referred to a cardiologist so soon, within eight months of your paroxysmal AF. Your blood and urine tests can be accessed online via Lifelabs/ehealth. It is not the role of the emergency doctor to discuss ablation since they are not the ones to make the decision.

Cardiologists are general heart doctors. The specialist in heart arrhythmia is an electrophysiologist who is the one that does ablations. To truly discuss ablation, have your cardiologist refer you to an electrophysiologist. Have him/her refer you now since it may be months before you get an appointment, especially if it were B.C.

These medical appointments are in greatly collapsed time. So, to "learn all the facts" do lots and lot of research.

You do not mention what sort of treatment you have been put on by your G.P. The trick is not to get to persistent AF if ablation is the eventual route you may choose.

I live in B.C., Canada. The medical system through waiting time and lackadaisical attitude got me to persistent AF when I could have had an ablation at the paroxysmal stage . Don't let it happen to you.

in reply tocuore

Hello Cuore. I was seen by a cardiologist in the ER who referred me to the current Cardiologist. No one mentioned Ablation. Only drugs , blood thinner and Beta Blocker.

No treatment at all by the GP. Only blood pressure medication.

Frankly, I don't like the idea of scarring the heart. I will look for other options.

cuore profile image
cuore in reply to

A GP is not licensed to prescribe anti-arrhythmic drugs, only the rate control drugs for AF. A GP can prescribe anti-coagulants. Clinicians do follow the guidelines for AF. You might want to read up on these guidelines and specifically for the province you live in.

Again, you must not live in B.C. because it is unlikely that you would have been seen by a cardiologist in ER, at least I wasn't. The Canadian guidelines follow the old AF guidelines whereby you must try drugs and failed first before an ablation will be offered. If you are elderly good luck because Canada is stingy in offering ablation to the elderly. So you need not worry that you will be offered ablation right away. And, even if an ablation is offered in Canada, it's a long, long road to fruition.

You do not mention how frequent your episodes are, but definitely adopt lifestyle changes first. Good luck to you.

In terms of scarring, if you get to persistent and left to live with AF, your heart will be remodelled. I do not know which is worse, scarring or remodelling.

But, if you have an ablation early on whereby only the pulmonary veins have to be ablated, you are lucky since there is a new procedure called Pulsed Electric Field whereby there is no burning of the heart. It is not readily available yet. Do, if you get to the ablation stage, pass that by your electrophysiologist. If I remember correctly , Montreal may be doing some trials, but then we are in Quebec.

in reply tocuore

In the US there is no restriction on GP's prescribing anything, except every type of doctor now prescribes opiods at their own peril.

My mother used to receive all her prescriptions, from every specialist, through her internist. The thought was that by seeing everything in one place, they would be more likely to pick up harmful drug interactions.

Adasian profile image
Adasian in reply tocuore

I had a similar experience. Been in persisten AFIB for a year. My heart specialist is now having me wear a Heart Monitor to determine it but I have an Apple Watch that does ECGs and my blood pressure monitor also shows Afib. I asked why I wasn’t offered an ablation in the beginning and he said I started out with paroxysmal Afib and now it is persistent. He said there are risks with ablation and since I did not appear to be having major inconveniences he stuck with meds. Now I am concerned with the Digoxin I was on as I read from some posts that it can cause memory issues. I have to wait and see. I am on 1/2 a 2.5 biosiprolol once a day and Xeralto. Don’t usually feel my Afib but get chest pains when my rate goes high. Usually it is in he 70s or 80s. But has gone as high as 120 on odd occasion. On the money motor next week. Worried persistent Afib can damage my heart. I live in Ontario, Canada

cuore profile image
cuore in reply toAdasian

I really do wish Canada would get its act together and not let patients irresponsibly fall into persistent AF and left to live in AF, especially for a year in your case.

I suggest you read this article by Dr. Haissaguerre in Bordeaux, France, the inventor of the ablation procedure, specifically the part in terms of how many rotors have developed at the year stage. :

afsymposium.com/library/201...

You might want to read up on the ATTEST trial which is the latest thought in approach to AF:

a-fib.com/2020-af-symposium...

In my opinion, the reason your "heart specialist" kept you on meds is a cope-out. Plus, I bet he is a cardiologist and not an electrophysiologist. If you research the percentage risk factor for an ablation you will find it very low --some articles say about 4%. Due to the inadequate functioning of the AF system in Canada, specifically B.C., I had to go to Bordeaux, France whereby I had to have three ablations with no complications at all. I currently have been in sinus for 15 months.

Do feel free to contact me because I have been through the mill in the Canadian system.

Adasian profile image
Adasian in reply tocuore

Thank you so much for all the information you provided. I have read it and will discuss it with my heart specialist. I did ask him when we last spoke why I wasn’t sent for an ablation. Now, as it said in the article, I have gone into persistent Afib. I learnt so much by being on this site and didn’t know enough to ask the right questions before. Going on a heart monitor on Monday to confirm my Status. I will certainly be more assertive with my questions, though because of Covid wouldn’t be able to talk to him for another week. So hard to know what to do as we are all different. Thanks and will keep you informed of my next step.

Bambi65 profile image
Bambi65

Welcome to our Afib book. We all have our chapters in this book, that tell of our experiences with dealing with Afib, which I call "my monster". Here is a bit of my chapter.

We, my monster and I, have been together just about 5 years. We share this body, but I control the head. Have been to a few Cardiologist and EP's , here in the states, both in California and now here in, Florida (aka, hot as hell) . Early on, I did try some of the meds, Beta blockers, rate reducers, etc, which did not work for me. The side effects were more sever than the monster. I also hate putting any foreign chemicals in my body.

However, last year, at the strong suggestion of my EP and my husband ( a surgeon) , I agreed to an ablation in just 3 weeks. Two weeks later I cancelled it. My reasoning: it does not cure Afib. It usually has to be repeated several times. The risk factor, and lastly it is to scab, freeze or burn, the heart "closing the bridge" so to speak. I dont want my heart to be scabbed from the inside.

I did agreed to take anticoagulants, only because it "may" stop a clot from being formed due to being in AFib. Ive made peace with taking that chemical, although it took 4 years.

Today, with all the experiences over the last few years, I can always tell when the monster is lurking just waiting to rear up, and then sometimes it just surprises the hell out of me. No reason, no definite triggers. Im in and out of it 2-3x a week, with HR of 140-190. Sometimes its for 30 minutes, and it has stayed once for 30 hours. What I have learned here is that this monster will not kill me. Its all about quality of life. Im a farm girl, raised where you have to push through, no matter what. Like I said before, the monster and I share this body and I control the head. I dont run to the hospital or call the doc because Im in Afib. I just continue on the best I can. I keep my Kardia with me, and write in my appt book (highlighted in yellow) each time I go into Afib. Looking back in the months and now years, I can see when my monster rears its head. Last month, I went 16 consecutive days without any AFIB. Thats a first for me, for us. This month, well, not as great. But I still laugh and enjoy each day.

Before this horrible virus, my husband and I traveled all over. I never allowed the fear or anxiety of "what if" the monster shows up . I live my life on my terms. I enjoy everything I do, and can do, and want to try. My Afib creature goes where I go, we are a team. We took 15 hr flights, we rollerskate, we swim, lots of bike riding, walking, and my newest hobby is learning how to teach my border collie to herd sheep on command.

I talk with my EP, for routine check ups and the tests he does to check the size of my heart, stress test, blood test, etc. No history of diabetes, high blood pressure, etc. All great I may add. I really like, trust and respect my EP's and doctors. However, they are MY consultants, period. I listen to their advise, then get myself informed, then ask more questions and I make the decision for me. So for today, I choose to continue my plan no meds, no surgical intervention. I take supporting vitamins, acupuncture, and keep looking for alternative treatments.

So, welcome to our book club. Many great chapters in here with lots of experiences. You are in a great place with great people. Welcome.

in reply toBambi65

Thank you Bambi65, very well put. It certainly helps to have a good circle of doctors to give you council. One of those being your husband !

I'm still a rookie at this. What are your thoughts on Pacemakers ?

Bambi65 profile image
Bambi65 in reply to

My thoughts on Pace Makers... hmmmm . Well this is my opinion....... Preface- Im against surgical interventions as a first or second or even a 3rd response to a physical problem.

Unless it is "only option" left, all other methods have been tried, and failed, and all holistic measures have not worked, and there are no underling cause which would cause heart failure, well in that case maybe.

in reply toBambi65

Thank you for your thoughts.

Adasian profile image
Adasian in reply toBambi65

Thanks for your post as I was wondering what my best alternative was, but like you prefer the non invasive route. Unless warranted.

cuore profile image
cuore in reply toBambi65

Hi Bambi, I have read your posts before. You are doing a fantastic job. Keep it up. In my opinion, the trick is not to let the AF become persistent. May you never get to persistent. It would be informative to have a chapter about those that reached persistent with their action and thoughts.

Bambi65 profile image
Bambi65 in reply tocuore

Great idea.

doodle68 profile image
doodle68

Hi Mrhermyl :-) no ablations here and not likely to be .

I have symptomatic P-AF and the episodes have increased in frequency, but I am living with it .

I have no intention of letting anyone loose in my heart unless there is no alternative , I am a 'bird in the hand' kind of person accepting that which I have and not always chasing something better.

I am 71 now, live alone and am very independent. If I was younger I would probably view things differently. I would also consider ablation if it offered a definite cure, but to gamble what I have now for the possibility of improving my quality of life when I could make things a whole lot worse doesn't make sense to me.

Also, it is unlikely one Ablation would work for me, I would need more than one and I don't like the thought of continually adding irreversible scarring to my heart. More than one ablation would entail traveling far from home, I don't like towns, lots of people around me, hospitals full of germs so I have done the best I can to help myself with lifestyle changes and medication.

Bambi65 profile image
Bambi65 in reply todoodle68

well said, and I totally agree with you. Scar tissue is thick and dense, Dont want that inside my heart either.

in reply todoodle68

Thank you. Looks like we think alike.

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