Once the ablation option is exhausted?

Hi,

I have had four ablations and am still getting occasional PAF (actually as we speak, which is why I am typing this!!!) and I have my possibly final appointment with the EP in november. He has already told me that another ablation isnt an option so I am wondering what my options are going forward. It sounds silly but I am worried about being abandoned by the medical establishment and left to fight for myself.

I am 52 and am hopeful that there will be a significant breakthrough in the near future, but then I worry that the four ablations and the scar tissue formed could count me out of any new treatments.

I have looked at meditation but any courses near to me are on at times when I have to work, I have bought a mindfulness book and CD but just cannot get into it.

There must be some of you who were at this stage, and I wonder what you did or didnt do going forward.

Thanks

12 Replies

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  • Is a maze an option? I was interested to see that four ablations is your limit, I wonder if that's the same for everyone? I haven't had an ablation yet, but my records say that I have, so whatever the limit is I'm already one nearer to it than I ought to be.

  • Hi Timmo - Like you I've been told after two ablations (the last taking 6 hrs) that because of the extensive scarring in my heart, further procedures wont be carried out. Don't know what my next step is either! I still have PAF and arrhithymia. I will be interested to see what responses you have.

    Jean

  • I have been told that a second ablation will not be an option. The next step will be pace and ablate. I cannot say that I like the prospect of being 100% dependent on a battery but I may have no alternative. I have a 'seriously dilated' left atrium and scarring. Obviously my recent ablation added to the scarring and after 4 ablations you must have a substantial amount of scarring too. The difference is that you are much younger than I am. You can only consider the EP's advice and take the action that is best suited to your circumstances. Very best wishes.

  • Do check you are getting enough potassium from your diet- I have found this helps to reduce episodes

  • Yeah, I would support this. A banana a day is a must for me and I can soon tell if I haven't had one!

  • I guess pace and ablate is the last resort but it won't stop your AF. What it would do is pace your ventricle so that you get enough blood circulation regardless of what the left atria is doing. The down side is being dependent and at your age you would be looking at at least two battery changes unless you have fight to a standstill with a bus or something. My old aunt used to say "you don;t know what's hanging till it drops" so live for today.

    Bob

  • What a delightful quote Bob! Lol.

  • I didn't want an ablation at first, and decided to change my lifestyle instead. eg. Tai Chi (involving breathing techniques) Diet now under a dietician using the Fodmap diet with some modifications. Added supplements include magnesium tabs; selenium drops; and IBS support; I have dropped the coffee to one per day and use peppermint tea instead and plenty of water; I cant seem to drink wine anymore so I don't bother with any now. I have just recently been told that my AF/SVT is too complex to operate on and due to my age might not be such a good idea, it does however mean my choices are limited and I have been (left as you call it) to survive the best way possible, of course this makes it difficult to handle psychologically but I am doing so well at the moment I actually feel normal again, if things get back to where they were, I am unsure what would be the next step.

  • I was first diagnosed with AF in 1992 I have had 3 ablations 2 worked for a time. I have had many CV and still have episodes. I was due to have a Pace and Ablate this year as they told me that they would not do another Ablation because of the scarring in my heart! I also have severe Lung problems and it has now been confirmed as Restrictive Lung Disease. My Pace and Ablate has been Cancelled! They have confirmed that now they do not want to do any other procedures, as they do not think I would survive them :( I would rather them be honest. I am waiting for a specialist heart image consultant to fit me in. (rare-er than rocking horse muck) so looks like a long wait for me.

    I am not the norm when it comes to AF sufferers but that is the facts for me.

    Be Well

  • Thanks guys,

    I was at a low ebb when I wrote that post and this place is always great for a bit of morale support.

    Reading Offcuts reply just reminds me how all our situations are so different and I wish you well mate!

    Has anybody found that there AF has gone away using Diet, Mindfulness, Tai Chi or anything else?

  • I feel so sorry for you I feel we end up being our own doctors. its scary.... live with it someone once said to me...yes a Dr. they only treat us they need to live with it for 10 mins, instant cure would be nearer.

  • I was told no more ablations would be done on me after 2. I am new on Tikosyn and things seem to be going well. Have had a few good reports on the med. May want to see if it is a possibility for you.

    Dan S

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