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Confused

oldbootsgb profile image
28 Replies

Hi,

I have had two Cardioversions both of which dropped me back into Afib within a day or so. My cardiologist a Professor at Guys Hospital whom I was referred to by my local hospital Cardiologist after the first cardioversion dropped out, offered me the option of an Ablation or a change of medicine and another cardioversion and seemed quite happy for me to go straight for an Ablation.

However, I chose the second Cardioversion which again dropped back within a day or so. When I went back to Guys for my next consultation at which I was going to ask for the Ablation to go ahead, I was asked if, after the Cardioversion (which, as I said didn't hold for long) I felt any difference or not. I replied that as I went home after the procedure and rested as I'd been instructed to do I really hadn't had time to feel different. I was then told that as the Cardioversion obviously hadn't made any difference to how I felt then there was no point in having an Ablation.

I said that when I had left home that morning I was full on ready to say let's go for the Ablation, I was then faced with a full list of all the negatives of having surgery, of having parts of my heart being burnt away only for it all to have a low percentage of success and especially so as I had felt no difference after the Cardioversion it really wouldn't be likely to help at all but if I wanted to go through all that and push for the Ablation then they would go ahead and do it for me!

Well, after that 180 degree change of attitude and despite my pointing out that I really had no time at all to know if I felt better after the Cardioversion I was at a loss to decide on taking the next step. So, I left Guys wondering why the big change of attitude and went home to ponder my situation!

Now, despite extensive research and through reaching out around the World to all my friends as to whether or not I should have felt NOTICEABLY better in the short time the Cardioversion held, I have been unable to find any articles or firsthand reports that said they noticed a big difference straight off the gurney! So, where do I go from here? It seems reckless to go for an Ablation and the risks of surgery against the advice of my Consultant/Specialist/Professor!

However, on the otherhand I'm sick of feeling crap all the time (I do have other issues that might be the cause of the restlessness/feeling crap or at least contributing to it) and I don't understand WHY there was a big change of attitude between my two visits to Guys and I really can't believe that I would have felt instantly improved straight after having the Cardioversion!

Any suggestions or comments welcome.

Regards

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28 Replies
Mazza23 profile image
Mazza23

I felt better as soon as I came round after cv as I was in NSR lasted about 4weeks had cryoblation in sept have had a few bouts of AF that have resolved have now been in NSR for about 6 weeks

pottypete1 profile image
pottypete1

To be pedantic an ablation is not surgery as apart from a couple of small holes in your groin and a small puncture between the right and left atrium - nothing is cut

Ablation is a safe procedure the risk of complications is very low. I have had 5 and I have just agreed to a 6th ablation.

On your other question it seems that you need a second opinion as it seems very strange that on the failure of two cardioversions you have been told that an ablation is not appropriate.

I understand how stressful this situation must be for you so I hope you resolve this matter soon.

Best wishes

Pete

Emsysy profile image
Emsysy in reply to pottypete1

Pete, I'm intrigued. Why go for even the low risk of an ablation when the previous 5 have, presumably, been unsuccessful ?

After having 2 procedures and a cardioversion I was advised more would be of no use.

pottypete1 profile image
pottypete1 in reply to Emsysy

The reasons I am prepared to keep trying are as follows

1. I have very bad symptoms when in AF and my quality of life is completely destroyed.

2. I have put up with this for 25 years the first 15 with only drugs to 'help'.

3. My Consultant Cardiologist EP says that there is still a chance that he can be successful.

4. Whilst the statistics are as Bob has said later in this thread in that there is a risk of death and a risk of complications the statistics are world wide. My own statistics are that I have had 5 procedures and am still here to tell the tale.

5. If I do not accept the offer of another ablation then I am left with putting up with this awful condition that when I am in it ruins my life.

I would finally say that anyone who has no symptoms must understand that AF is not life threatening in itself but it must be understood that having the condition Atrial Fibrillation increases the risk of stroke.

If you have no symptoms and you can carry on with your normal life I can totally understand why someone would be happy to live with it.

Pete

JonathanPittsCrick profile image
JonathanPittsCrick in reply to pottypete1

Hi Pete,

Have you discussed with your EP the option of a pacemaker and AV-node ablation? – it has an almost 100% success rate and can relieve the symptoms of AF just as well as the complex left atrium / pulmonary vein ablation whic seems to have proved very difficult in your case.

pottypete1 profile image
pottypete1 in reply to JonathanPittsCrick

Hello Jonathan thanks for your comments

Yes I have, if you read my post of 2 days ago "Report of today's consultation with my EP Cardiologist..............." you will read my thoughts on this option and also a number of replies from other members of this forum.

Right now AV node ablation is not for me.

Best wishes

Pete

Emsysy profile image
Emsysy in reply to pottypete1

Pete

Thanks for your response and I wish you well. I've had AF for 11 years; permanent for the last 3/4 years with what I consider very little symptoms. Just the odd day when anything (physical) seems hard to cope with. I like to think I keep fit and can manage to hold my own pretty well with my peers in various activities (table tennis, badminton, cycling, walking).

I guess I'm one of the fortunate ones and I do count my blessings.

azriverrat profile image
azriverrat in reply to Emsysy

I am going for number four. First one did not do upper chambers. Second was a failure. Third did get the afib. Forth hopefully the flutter. Plus have on third and now forth got a top ep. Cardioversion never held to even leaving the hospital.

sleeksheep profile image
sleeksheep

The first time I had a CV I felt way better as soon as I came out of the anesthetic , but I had been feeling really lousy before that, couldnt even walk up two flights of stairs without being dizzy and breathless. But since then on my next three CV's it didnt make a noticeable difference as it was performed a lot earlier after going back into AF.

Latest one has kept me in sinus rhythm over six months now and with a change of drugs has made a big difference.

Although each of mine have held a minimum of four to ten months before another AF episode.

RoyM profile image
RoyM

Hi I can relate to your situation. I was in PAF for a number of years and then in march 2016 went into persistent AF. I am lucky and have no symptoms at all. My life is in the main much as it was PRE - AF I still swim, cycle and walk without much restriction apart from age lol I was scheduled for an Ablation in May last year and on the day I was due I had a discussion with the EP actually just before going into the cath lab. The EP was willing to go ahead but because I was being bothered by the AF he felt the risks of going ahead far outweighed the benefits he could achieve by the Ablation. So, the joint decision was to cancel the procedure. I am still in persistent AF and still pretty much symptom free. I am due a cardioversion on the 24th Jan.

BobD profile image
BobDVolunteer

OK. Lets start at the beginning. There is no actual stone bonkers certain cure for AF BUT ablation stands the best chance of improving quality of life (QOL) if successful. ANY treatment for AF is purely about improving quality of life. This may be drugs. ablation or a combination of both. Drugs may include anti-arrhythmic drugs or merely drugs to reduce heart rate such as beta blockers (eg bisoprolol ) or calcium channel blockers (eg dlitiezem). In addition obviously one considers stroke risk and ant-coagulates accordingly. This latter situation would not normally change after ablation since there is no evidence that ablation reduces stroke risk.

So having established that no treatment actually changes materially life expectancy (although there are some exceptions) lets look at QOL. If a patient is in persistent AF and cardioversion fails to produce NSR there is little point in ablation which is unlikely to work. Should NSR be produced and the patient feel greatly improved QOL then attempting ablation may be appropriate even though this may entail several procedures (not surgery as has been pointed out already). Should NSR be produced even for a day or so and the patient not notice any difference then QOL is unlikely to be improved. Most people would notice straight away that they were in normal rhythm, and be able to tell, many shouting hallelujahs to the heavens as they wake up. That you were not aware of the changes as soon as you came out of sedation would suggest that this was not the case.

Now ablation is generally a safe procedure but there are statistical risk which theoretically could include death. Now why if a procedure is unlikely to change your QOL would you want to take those risks? I don't think this is a case of about face. merely that all the facts had not previously been explained. Sadly this is not uncommon due to the time constraints placed on doctors, We patients always need to educate ourselves so that we actually know what questions to ask.

Hope that helps.

Stucoo profile image
Stucoo in reply to BobD

Bob, I am in persistent AF, asymptomatic and am due a cardioversion next week. I never really noticed a huge difference when I was last cardioverted apart from no longer being able to feel my heart jumping about when trying to sleep. What I have been unable to find out is what are the long term effects of being in persistent AF if there are no QOL issues and the heart rate was controlled ? Is it likely that a few years down the line I would become symptomatic and/or possibly end up with an enlarged heart or even heart failure if left in AF?

Thanks,

Stuart

JonathanPittsCrick profile image
JonathanPittsCrick in reply to Stucoo

So far we do not have any evidence that restoring sinus rhythm definitely improves the outlook for people with persistent AF. This is mainly because there are a wide range of reasons for people to have AF in the first pace and the particular reason (e.g. high blood pressure, alcohol, cardiomyopathy) may, in itself, cause long-term adverse effects whether-or-not sinus rhythm can be restored by drugs or ablation. Also we don't know whether the drugs or ablation procedure may themselves have adverse effects further down the road (in 10+ years time) or if they will still be working – and most people with AF would hope to be still going strong in that timescale.

What we do know is that longterm AF, with proper anticoagulation, is compatible with living to a ripe old age and, with adequate rate control by drugs +/- a pacemaker, a good quality of life. So any relatively recent "wonder cure" needs to be assessed carefully and applied where it can do the most good. In the case of LA/PV ablation this is in people with bad symptoms due to paroxysmal (starting and stopping by itself) AF and no structural heart disease.

A-U-B-Y profile image
A-U-B-Y in reply to JonathanPittsCrick

Good morning, I'm new to all this and apart from being told on the 19th of December that I had AF , after being rushed to hospital with a heartbeat of 180, I'm at a loss to now what kind of AF I have

I've had an echo gram and been put on Bisoprolol 5 mg and Apixaban, but I'm still waiting for follow up visit to clinic. Should I book a private consultation

I also have a problem with my tummy and I'm due to have a body and bowel CT scan in a few weeks. Will the scan affect the AF in any way as I'm terrified that the procedure will make my AF worse

Saw my gastroenterologist yesterday but forgot to ask this question ,although he knows about the AF

Your thoughts on the matter would be greatly appreciated

Thanks in advance

Aubrey

Tbernst profile image
Tbernst in reply to BobD

Hello Bob,

I have read that AF is in most cases progressive and over time remodels the heart, especially the left atrium which becomes larger and less efficient. Over time the atrium develops more sources of electrical disturbance contributing to the progression from PAF to persistant AF. Rate control can limit the symptoms and rhythm control can in some cases reduce the damage but at the end of the day the heart suffers. The only thing that can stop AF is ablation and the earlier the better according to many of the posts I have read. AF rarely just disappears on its own. The second generation cryoablation technique seems to provide the same results as RF ablation but is easier to learn, the procedure is faster and the choice of center less critical. Any procedure requiring GA does have its risks but then so does anticoagulation. I am surprised there is not more enthusiasm on the forum for early ablation.

BobD profile image
BobDVolunteer in reply to Tbernst

I am a great fan of ablation having had three and AF free for many years BUT it does carry risks and nothing is for nothing. If you read Jonathan PittsCrick above he is one of the top men in UK so take notice.

Tbernst profile image
Tbernst in reply to BobD

I had a look at his resumé but I am covered by French health insurance so UK is not an option. In any case I prefer to try Cryoablation first but would like to find a center using second or third generation equipment (Arctic Front Advance or Arctic Front Advance Plus). There are a couple of differences in treatment between France and England - all ablations are done under GA and they seem to update the technology more often. There does seem to be similar problem of backlog and over emphasis on the risks involved with ablation and under emphasis of the damage caused by the rhythm and rate control drugs we take and the possible dangers or anticoagulation. I am in and out of AF on a daily basis with a resting heart rate of between 50 and 80 and an occasional bout of flutter so AF is nothing dramatic. The combination of bisprolol and AF limits any kind of physical activity and as things can only go downhill from here. Ablation success rates have improved over the last few years so I might get lucky and one will be enough. My AF seems to be preceded by ectopics and in this case PV isolation is particularly effective. We'll see.

Thank you for your encouragement

BobD profile image
BobDVolunteer in reply to Tbernst

You will not find me argue against early ablation but in UK money seems to talk. Cryo ablation early on has a good success record but as I keep telling people it is not so good if AF has developed to other areas of the heart as it can not be used other than in the four pulmonary veins. That is why early intervention is so important.

Tbernst profile image
Tbernst in reply to BobD

Indeed. After a few years of AF irregular signal sources pop up everywhere apparently. I have managed to develop a flutter circuit in the last year or so which they will have to go after with RF. As you say ablations do cost money and the managers must pale at the thought of sending everyone with AF to have at least one but if they counted the cost of hours lost to sick leave, careers cut short and the cost of dealing with unnecessary strokes they might reconsider.

cuore profile image
cuore in reply to Tbernst

I had not found this forum two months ago which is why I am replying now. I prefer your line of thinking. Unfortunately, my GP was old school and kept me on rate control until I swiftly went into persistent, whereby after a 40 day wait I saw a cardiologist that I also feel is old school. Yes, I am concerned about remodelling -- a topic that appears to be dismissed by many. I have to have a cardioversion (scheduled April 13/'17) before I can even see an EP.

Exasperated profile image
Exasperated

Hi Sorry to hear you are at a loss to comprehend the attitude of your consultant regarding your A/F. These days Doctors, let them be consultants or otherwise will only give a patient information regarding their complaint with the view that you are the one ultimately, that will decide what course of action to take. It is what is known as "Informed Choice". This attitude was brought about by patients being all too ready to blame the medical profession if the outcome was not what they expected and sue the Dr. We on the receiving end, want guidance from the professional we think has all the answers. Unfortunately we can end up in a catch 22 situation.

Feeling better after a medical procedure is different for everyone, as one size doesn't fit all. Having had my second Ablation I speak from experience because I am still feeling ill four months down the line. You say there may be other issues that could be a contributory factor to you feeling "cr..". I would advise you to have those issues addressed first and then you will possibly be in a position to make a decision about your A/F treatment. Believe me I'm having several investigations carried out to determine why I'm feeling so ill post my Ablation. Good Luck.

jayjaybee profile image
jayjaybee

Like you my hubby had first dccv and went into nsr for only a few hours. He was honestly unable to say whether he felt better as most of the hours were overnight or recovery time. When speaking to EP nurse she said, if asked, to say that he felt lots better. He did so and was offered a second cv supported by amiodarone or an ablation with the caveat that the ablation was unlikely to be successful. He chose amiodarone which proved to be tolerable and after 2nd cv we didn't hope for much success.....but he has now been in nsr for nigh on two months and feels greatly improved. No breathlessness and with reasonable energy. He has to see consultant again in February and decide a way forward. His QOL in AF wasn't too bad but afterwards far better. Next decision is whether to take up ablation if offered.

Mike11 profile image
Mike11

have the ablation - you have nothing to lose and the whole rest of your life to gain

Jonty_13 profile image
Jonty_13

I had two failed cardioversions and now onto my third ablation. I have felt better after each ablation and i now can get along without and drugs until i stress the heart with exercise. So the ablation for me has improved my quality of life whilst i do understand that it is not a cure and may require more than one. Read the book 'how to beat AFib' for a really useful summary of the issues with the various option. Lifestyle changes will also help. Healthy eating etc etc.

best of luck

jonty

Spoiler profile image
Spoiler

You dont mention the drugs you are taking, they are a big factor in having a successful cardio version. My first two did not work, I was on cardizem the first one and betapace the second one and the third one was Rhytmol, that cardio version lasted 20 months being on that drug. Since then and 4 more successful cardio versions and new drugs, I have been doing well. Whatever drugs you are taking also is a major contributing factor as to "How you feel". The cardizem and betapace made me feel exhausted, out of breath and sleepy, neither . Rhytmol or flecainide has made me feel that way. Ablation has been offered but I have not felt confident in the risks. Hope this helps.

Beancounter profile image
BeancounterVolunteer

Hi Oldboots, this is a thorny problem isnt it.

I am like you persistent AF two cardioversions, the second with Amiodarone only put me back into NSR for a few hours, and I did not know the difference.

You've a lot of comments here, and some excellent ones, but I can only really take you down my decision path which was away from an ablation and agree with my EP.

1) I am amost asymptomatic, I live a pretty full life and in 95% of ways AF does not interfere with that life, although Machu Picchu is off the bucket list (altitude) and I won;t be skydiving either. But I can and do travel generally wherever and whenever I wish.

2) The longer you have been in persistent AF, the lower the success rate of an ablation, now this is a double edged sword, because of course if your AF gets worse delaying will mean a lower chance of success. Many on here say that AF is only ever progressive, but I can only say that for me it has not been so. Although diagnosed 4 years ago, I am pretty certain I have been in AF since at least 2008 with no worsening of symptoms. THis of course may not be the case for everyone

3) The drugs I have to take now are simply a NOAC and very low dose diltiazem, and to be honest if I forget to take the diltiazem I do not notice the difference, if I were on a much higher cocktail of beta blockers or calcium channel blockers then I would lean more towards an ablation and long term drug use is never preferable for me.

4) Ablation can have complications, but in most cases they only talk about the serious complications which are very rare indeed, and for most people with symptomatic AF I suspect not enough to prevent wanting an ablation. BUT there is also the risk of taking you from asymptomatic, to symptomatic AF, which for me is not a path I wish to go down.

Remember the longer you have been persistent the more defined are the WRONG pathways the electrical signals are going down. And there is a form of "scarring" which also takes place, again the longer persistent the more extensive the scarring. This is what makes ablation less successful, now as they ablate those pathways to try and make them go back through the AF node and into the correct path they could effectively ablate you into some form of symptomatic AF then requiring multiple ablations to try and correct.

So sit on the fence and wait for it to get worse? or jump in early and have an ablation?

I can't answer that for you, it's a personal decision with your EP hopefully, it is entirely possible that at some stage in the future my AF will get worse and I will have to consider ablation or other treatments, but I can sit back and say "I had 8 good years"

Will leaving it untreated shorten my life? Well as Jonathan says (and he is highly qualified so do listen to him), there is no real evidence either way. There are some who have strong views on the subject and tell me my life is shortened by 5 years, and my "internal answer?" is that I would rather have 15 years of good quality of life working and travelling, than 20 years of symptomatic AF.

For me, if your quality of life is good, and your drug regime small or limited only to anti-coagulants, then I would defer ablation, but you must talk this through with your doctor.

Be well

Ian

irene75359 profile image
irene75359

Reading this thread has reinforced why the daily update (to me) is essential reading. From the original post onwards, one-by-one all my questions were answered. My sincere commiserations to those of you who are suffering, but thank you so much for sharing and sparking off such an informative thread. I appreciate this forum each and every day.

oldbootsgb profile image
oldbootsgb

Hi Again,

Firstly I’d like to thank all of you who have taken the time to respond to my post/this thread with education, suggestions and encouragement.

Further to that previous post I’d like to add some further background to add to the picture of my situation.

With regards to previously mentioned background issues there are factors relating to injuries which means that I am nowadays not able to live a very active lifestyle and therefore my QOL is already degraded and the AFIB doesn’t neccersarily have a direct bearing on that!

However, on the otherhand prior to those injuries and while I was certainly trying to live a more active lifestyle AFIB may have played a part, although it will be hard to determine whether or not that is so as I have been living with my injuries since 2002!

Prior to that time and for many years I have suffered from very high blood pressure, whenever I was seen by a different health care professional (which was often as I was living a nomadic lifestyle in the USA and had seasonal allergies and issues) this matter would be mentioned but as it appeared to be a background issue nothing more would be mentioned about it and this was a pattern that continued for many years and after I returned to the UK in 2004.

After returning to the UK I was seen by quite a few different Healthcare professionals as I moved several times and most Doctors practices I attended appeared to rely heavily on locums. Then one day I experienced what I believe was an Angina attack and this encouraged me to attend a surgery where I was again treated by a locum who not only observed that my blood pressure was very high but that my pulse was irregular too. It was this revelation that set me on the path towards cardiac treatment.

Now, I cannot of course know whether or not my heartbeat had been irregular for as long as my BP had been high but I also cannot rule it out. What I do know is that for many years since way before the accident that caused my injuries in 2002, I had struggled with physical exertion, I suffered shortness of breath, I had trouble sleeping and no matter how long I relaxed or slept for I always awoke tired and never refreshed.

As for my medications I am on:

For Heart & Blood Pressure:

Rivaroxyban 20mg Once Daily.

Lisinopril 20mg X2 (40mg) Once Daily.

Bisoprolol 20mg Once Daily.

Amiodipine 5mg Once Daily.

...................................................................................................

For Pain Relief:

Buprenorphine 70 micrograms per hour Transdermal Patch for Pain replace tri daily.

Rewisca 200mg 1 capsule X 2 daily (for pain).

Amitriptyline 20mgs at night (for pain).

Oxycodone 5mg capsules 1 X 4 times daily as required (for pain)!

.......................................................................................................

Sertraline 50mg once daily (anti depresent).

.......................................................................................................

Tamsulosin 400microgram modified release once daily (for waterworks).

........................................................................................................

As far as determining what course I’ll take I’m even more confused than I was before. If I had a plumbing problem or car trouble I’d call a specialist and they would determine the cause of the problem and prescribe the remedy, I fail to understand why doctors can’t or won’t do the same, the fact is that most of us are unqualified to make the right decision for a number of reasons and may very well choose the wrong path, it’s madness to leave those decisions in the hands of the unqualified!

Regards,

oldbootsgb

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