Persistent AF - Success of Ablation?

[clanmags]

After being told by my Doctor, and an NHS adviser, that I would be put at the back of the queue for NHS treatment if I paid for a first appointment at the cardiology unit of my chosen hospital, I have (finally) made a private appointment with an EP at the hospital and been told that this will help to get things moving quicker! It took me a little while to realise that the first appointment I was given on the NHS would probably be very general and I would then have to wait again to see the EP. I have been in persistent AF for over 4 months now and still angry that nothing was done during all the years it was paroxysmal. But...we move on. What I am now worrying about is whether an ablation will help (if offered) now that my AF is persistent. Has anyone with persistent AF had good results after an ablation? Thank you in advance. Without the information on this site, I would be waiting a further 5 weeks for a first appointment at the cardiology unit without knowing that I needed to see an EP.

[Perrylees]

Hi Clanmaggie

I had an ablation after being in persistent AF for about 9 months. I never had paroxysmal AF so perhaps a little different to you - just woke up one morning and there it was 24/7! Anyway.... I had my PVI ablation at the end of March and have been in NSR ever since - so far not even any short episodes of AF. Pre procedure I was told there was a 60-70% chance of complete success and so far so good ( everything crossed). Of course it's early days but hopeful results so far!!

The ablation itself was not that bad and If I need a 2nd sometime I don't think I would hesitate to go for it but hopefully that won't be necessary!

Hope this is of some help

Ruth

[clanmags in reply to Perrylees]

Thank you, Ruth, for your reply. I feel a little better knowing that an ablation can work even when one is in persistent AF. A 60-70% chance of complete success is worth going for. Here's hoping....

Maggie

[PeterWh in reply to Perrylees]

I was told that the belief is that those who only discover that they have AF when they are in persistent AF did actually have paroxysmal AF previously but that their AF incidents were asymptomatic or mildly symptomatic (often attributed to other things) or were unaware of them because the AF incidents occurred in their sleep. I was only found to have AF when it was persistent and definitely fall into category 2 and obviously quite possibly both the others.

[Perrylees in reply to PeterWh]

It's possible I suppose but if so I had absolutely no idea..... When I went into persistent AF I was immediately very symptomatic so that doesn't seem to make sense / seems strange at least ?

Ruth

[PeterWh in reply to Perrylees]

Not necessarily because at that point you may have had 1 and 3. Also like with real electricity the fault initially can be a slight leakage it trickle but when it finally breaks through it goes with a bang. Think of it like water. If there is a very small hole in a mud dam wall then most people won't notice it because the only visible effect is a small damp patch. However over a period that then turns into a very small leak and gradually into a trickle which is then noticeable.

[Perrylees in reply to PeterWh]

ha ha - I like your analogy.

I deny any damp patches!

Yes - all possible I guess but I will never know for sure now......

[PeterWh in reply to Perrylees]

Well originally I was a professional electrical power engineer. Trying to explain some aspects to non electrical engineers (including some really good engineers in other disciplines) often proved difficult because the problem with electricity is that people can't see it. Therefore I learnt to use analogies such as water, mechanical things,cars, etc. Proved very worthwhile.

[Barb1]

Peter Wh is spot on. I must have been in persistent for about 5 years and paroxysmal before that. I am in SR, for now, after my 4th ablation Feb 2015.

[PeterWh in reply to Barb1]

So I have some uses in life!!!

[NanT]

I went from paroxymal to permanent and had a successful ablation in January this year. In NSR ever since.

[clanmags]

Well, that's good to know, NanT. I was of the belief that an ablation wasn't on the cards if permanent AF set in. Brilliant news.

[traveler65]

What state are you in? I got an appointment with an excellent EP last year (who did a great ablation)--and with no referral he would not see me unless I had some evidence thaT i HAD ABNORMAL HEART RHTHYMS. i HAD AFEW YEARS OF ABNORMAL EKG RECORDS WHICH i FAXED TO HIM, THE LATEST BEING THE WORST. tHE PROBLEM, AS YOU SAID IN YOUR CASE, WAS THAT WHEN IT ORIGINALLY SHOWED UP IN BRIEF EPISODES AND NOT SO CHAOTIC AS IN THE LATTER MONTHS, WAS THAT THE GP'S AND THE GENERAL CARDIoloGISTS DID NOT DO MUCH ABOUT IT. tHE LAST GENERAL CARDIOLOGIST i SAW BEFORE THE EP REALIZED i HAD AFIB and finally recommended an ep she knew (but whom I did not think was good)-so I found my own. In all cases of complete medical records from 2011 through 2015 when I requested a complete set of all medical records, doctors were reluctant to mail copies to me--at Cornell-Weill medical center in NYC-- the secretary I called said "we never do that"== I told her she was legally required to send me every bit of medical data she had because legally it is my property, and if I had to have a lawyer get it for me then the hospital would have to pay the legal fees. In the background I could hear another secretary telling her Iwas correct.. They sent it but left out the details of the cathetorization they did in which they looked for something abnormal, but it was not there. Again, I insisted and they sent the complete cathetorization records. ( i even had one cardiologist "fire " me as a patient because he could not deal with my desire for the complete medical records. Isn't that silly?)

BASICALLY--you need- an EXCELLENT electrophysiologist --with an excellent support staff--in an excellent hospital. For such conditions in the USA Mayo clinic is 1st (rochester minnesota); Clevelan CLinic is next, and 3rd is Strong Memorial Hospital in Rochester New york; I think 4th is a hospital in Boston , Mass.

I saw Dr. Mehmet Aktas at Strong Memorial. He is one of 3 EP's in their electrophysiology Lab. The 4th person on their team is the manager of the

EP Lab. I chose Dr. Aktas after I saw that he did a residency at the Cleveland Clinic, he teaches in the medical school, he writes electrophysiology textbooks, and he does research which he publishes--many studies. This means he is thinking about how to solve the patients' heart problems. It sounded to me that this was someone I could trust. Also, of the various dangerous possible things tht could happen during an ablation and which have happened in other hospitals--they have not happened at Strong Memorial. They gave me incredibly excellent care-and agreed to except Medicare (whatever Medicare would pay)-but of course were happy that I had Catastrophic Major Medical (the catastrophic referring to the cost not the condition-and with a deductible of 25,000 dollars in the last 36 months paid by any insurance and myself--which had been met due to a knee surgery and various heart tests). The hospital basically got paid about $72,000-- which is what the procedure really costs. So some patients have major medical extra insurance and some do not--but everyone gets excellent care---even a prisoner from, probably Attica, who was brought in by 2 armed guards. They even treated a very young child--they have a kind of afib different from adults-it's in a different part of the heart . These people really care about you and want to prevent people from dying--what a concept.

A very smart, competant EP and his team is what you need--to get an appointment without a doctor refferal and all the red tape garbage nonsense--- find an EP you think is smart enough to help you; contact the office; get complete medical records of every ekg you ever had; fax it to the doctor's office--even if it costs you$100 for all the pages---when he sees your chaotic electrical heart behaviour he will be convinced you need to see him. The point is that you need a great doctor. Look at STRONG memorial in Rochester New York--or Cleveland Clinic.

[clanmags]

Wow! Thank you for your very comprehensive reply, traveler65. I'm living in Lincolnshire in the UK at the moment and, unfortunately, can't go with your suggestions of hospitals. However, I am taking your advice and have now become very interested in the success records at the hospital I have chosen to carry out the treatment I know I will need. I was given a list of hospitals to choose from, only two of which have resident EPs and one of those hospitals is in danger of closing down (due to cuts in the NHS budget?).

[Lofty77]

My ablation was carrried out ,two years ago it lasted eighteen months ,I had a further one four days ago leg is very sore the bruising covering the whole of my thigh ,I was told once again the ablation could last three years ,three weeks or three days .PS do all of these change of information messages come from UK patients?