Doom and Gloom

So, long awaited trip to EP today, an eminent professor. It was a good meeting, however, he no longer does Ablations. He was honest and states that he no longer has the confidence to do them..as he nears retirement. His advice to me, I am in Persistent, almost at Permanent, forget any further CV. I have had one failed CV. The view of the UK NHS, is that they rarely work long term. Ablation, it would be PVI for me. He recommends do not do it, certainly not at the moment. What was interesting in his comments was how little is known, which I think we all can concur, about the condition, its cause, its effects, and cure, by the ''experts''. One man's view I know, but an interesting one. He was trying to tell me that it is so individual, that it is impossible for the 'experts' to concur a method of treatment. Therefore, rate control (not rhythm interestingly), is the goal, for me, through medication. If I kick and scream, about my quality of life, they may put me on the waiting list for ablation. But I am not considered suitable. The view is that AF begets AF, and once in Persistent./Permanent, very difficult to get out. Still mulling it all over.......appreciate any further thoughts

14 Replies

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  • Well, it sounds like the eminent professor near retirement is not keeping up with the latest advances in treatment of AF, and I know of many people who were successfully treated for persistent AF. And maybe if an ablation is truly not the procedure for you, possibly an open procedure might be the ticket. They are not fun, and require a longer recover but they have a higher success rate than ablations. If you don't want to live your life in AF, then find an EP who thinks like you do! Good luck!

  • What is the open procedure?

  • There are variations of the Maze procedure which requires some small chest incisions. Basically endoscopic surgery where they have better access to the back of the heart and pulmonary veins, than in a catheter ablation.

  • O.K. Open sounded much more drastic than that!

  • oh, so sorry ! Didn't mean to give you more to worry about!

  • It was just something that I had not heard of before!

  • My EP, about the same age as yours, is also not keen on ablation.

  • Before you give up, ask about going on Amiodarone and having an internal catheter CV. Hopefully you will be able to get into NSR and see if that's better for you than staying in AF.

    It's not a permanent solution but might give you at least an experience you can make a decision about ablation on

    Lance

  • If I had AF episodes that came and went with no effect on my quality of life then perhaps I would not have bothered with an ablation? But sadly that's not how AF works. For most of us it does affect our lives - it's uncomfortable at best, it stops us doing things we want to do and, most importantly, whatever it's like now it will almost certainly get worse. It's well and good to say we should wait for better treatment options but how long do we wait? Most of us on this forum, I would guess, are 60+ and, at the moment, ablation is the only cure on offer.

    I waited and wasted five years. I'm certainly glad I didn't wait any longer.

  • My rule of thumb is I will know when I need to go for an ablation as my QOL will be at a level that signs me up itself. I am Lone PAF, so no experience of your circumstances.

    In the meantime, I think there is some good advice to pick out from your Professor's comments. You don't often have the opportunity to hear views from an experienced EP, who has no axe to grind.

    My cardiologist wanted me to postpone going to the EP, I insisted and he said remember if you go to a carpet salesman you are likely to buy a carpet. We were both right as the visit in one sense told me nothing new (he said ablation but only 70% success, a second likely) but did reinforce my determination to postpone an ablation and work on lifestyle changes. No regrets on that decision so far.

    Good Luck either way.

  • I thank God for doctors who can respect the patient's own knowledge and insights, be open and honest about their limitations and refer us - not like the old days when they were more often so arrogant, patronising and demeaning...

  • Orchardworker, and that I think is exactly where I now sit.I will determine, through a sense of QOL, when and where I will request further intervention. He told me at the end of the session, if I really wanted he would put me on the Ablation waiting list, but it was I who was to let him know if I wanted that route. Spoke at length with my very understanding wife, and we both realise that this is it for the moment. Work with what we have, and if it gets worse, regroup. In the interim, many lifestyle changes going on....all for the better.

  • My experience with my E.P. is that these ablation are not dished out like double glazing as they cost so much money. He had to put my case to the hospital board for approval and said he wouldn't have put me forward unless there was a good chance of success and unless I was otherwise in good health e.g. wieght, blood pressure e.t.c.

    I felt that if it was being offered to me I ought to have it done as I may ultimately get to a point when my health was not so good and then I may not be given the chance.

    My hospital is not a high frequency centre for ablation and I'm sure it is different in other health authorities. I live in Wales and am not able to choose to go to a centre of excellence in England.

    It's a big decision for us to make and everyone has to come to their own conclusion after weighing up the pros and cons in our individual situations. X

  • I had persistent AF and an ablation took it away 100% and immediately. Admittedly I hadn't had persistent symptoms for more than say a few months as I was controlled by drugs. My EP said that because it was there all the time they would know whether they had got it or not, there and then, and he was spot on.

    Koll

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