After euphoria about having had EP consult at last after tons of tests, now back down to earth and am questioning things.

[meadfoot]

Reality has hit and I am somewhat confused. Perhaps I have misunderstood over time but my assumption was that I would have an EP study before ablation and I recall one forum member saying their EP took them off meds so an AF episode would occur so they could see where the arrhythmias were.

I am told I have multiple arrhythmias (confirmed by lots of various tests), AFib, Aflutter and atrial tachycardia and that is why I have such extreme symptoms requiring hospitalisation as they all randomly hit me at the same time and 'go wild'.

All the rhythms are complex and random and the ablation procedure will be complex apparently. I have minimal plaque in arteries and slight valve leakage (not enough to require treatment at this point).

I will have a CAT scan in advance to look at the structure of the heart and the ablation will be cryo. I asked about a EP study but this will not happen nor will I be put out of rhythm. They will go in and undertake a cryo ablation of the pulmonary veins and hope they get the rogues causing my symptoms (I assume it will be more targeted than that). I may need up to 3 procedures as they wont get all the rogue elements first off. This is to get up to 70% chance of being free for 5 years. There is a 5% chance of complications. It will be undertaken under sedation. Hopefully would be meds free or minimal. Would stay on anti coagulation for life. (meds still working currently by the way).

Sadly my EP may not do the procudure(s). I trust him and want him to undertake it (I told him so), but I have only a one in four chance of it being him as there are four EP's and patients just go on a general team list. I know the names of the others but know nothing about their expertise and numbers of ablations undertaken. My EP is known to be very good and experienced.

I discussed being referred to London and he was amenable to it especially with our long waiting list. He was not offended and put my mind at rest about taking care of me when I came back and ongoing which was comforting as I dont want to get on the wrong side of my local teaching hospital.

So what do I do:

Rely on the way they do things here at my local hospital.

Be on waiting list for 12 months and then get an EP I don't know, (cant find anything out about them to date).

Trust I get my guy he trained in Beaudoux where one of the London EPs did and is meant to be a centre of excellence.

Contact either of the London specialists I have in mind (have been told their waiting time is much less and at least one of them is willing to take my case).

Any thoughts, suggestions would help me please, or any other considerations I have not thought of about ablation process or where to have it done.

Thanks.

Regards

Dee.

[BobD Volunteer]

Hi Dee and I hope I can shed a little light on some of this.

The cryo ablation procedure involves threading a small balloon down the catheter and into the entrance of the pulmonary vein (there are four). This is then filled with liquid carbon dioxide which freezes the area to create the burn scars required to stop any rogue impulses.. Since it is thought that most of these come via the four pulmonary veins there is no need for an EP study as they will all be captured.

This is all very well in theory but during my RF ablations, in addition to rings around the PVs they drew a couple of lines across the atria and I guess this is why they say maybe additional later procedures.

Regarding what to do I can only say that Brompton Hospital looked after me very well (and still do for that matter) and it is always worth casting your net wide. The whole process is very worth while and the (six this June) years I have been AF free have been well worth the four years I spent in treatment. That is not to say I don;t have other arrhythmias but that is par for the course really.

Hope this helps

Bob

[meadfoot in reply to BobD]

Hi Bob, thank you so much for your helpful feedback and encouragement, which as always, is informative and reassuring.

I have become increasingly concerned about the procedure and there not appearing to be any data on long term effects of such an invasive act on the heart. However you appear not to have had any long term damage (6 years) post procedure so I take comfort from that. I guess it is difficult to assess, as in medical circles ablations are relatively new procedures improving all the time.

Since posting earlier I have received a letter asking me to call to arrange the CT cardiac angiogram coronary test. This sounds awfully like the Nuclear medicine myocardial perfusion stress test I had in nature and I was really ill during it needing oxygen and attention from medics so I am really scared of it and vowed I would never have anything like it again.

By contrast I found the angiogram procedure a breeze. I really dont understand why I am to have the CT given that the NHS website says it is an alternative less invasive procedure than an angiogram which I have already had in November. Did you have the CT scan?

I really don't know why I have such bad physical reactions to tests (even going down during the treadmill test resulting in 16 days on cardiology ward) but it seems to happen ongoing. Yes I am anxious (but not a wimp) and go through with them every time even though I know I will feel dreadful physically.

I will call them to see what I can expect and explain my last experience. Sods law my BP will be sky high and they will send me home without it being done first time round.

I will try very hard to be a' Warrior' rather than a' Worrier'.

Will look into the Royal Brompton hospital as part of my research.

Always pleased to hear from you and thanks for all your ongoing input to the forum and beyond.

Kind regards

Dee.

[BobD Volunteer in reply to meadfoot]

I had a CT scan for my last ablation which was no problem. The whole point is that AF is damaging your heart all the time in small ways and over time could bring on other problems so getting rid of it is worth while. Many EPs feel that early intervention is the best way forward and no there does not appear to be that much LONG term data on results. I have heard a 50% chance of AF returning within five years but frankly it has been worth it all and of course had I not had that last successful ablation I probably could not have had the cancer surgery so for me it has been a win win situation.

Bob

[meadfoot in reply to BobD]

Thanks Bob, you make some excellent points which I had not thought of and I will take them on board. Makes good sense, I will keep them in mind especially when I get the jitters.

Keep well and happy.

Kind regards

Dee.

[Rellim296]

Assuming there is a similar standard of excellence throughout, I would be inclined to consider the fact that your heart isn't going to improve over time and thus cutting down on the wait has several advantages. Your life will be on hold until you can move ahead and it's not possible to make firm plans when surgery is looming.

I was off meds for my first ablation (which was evidently a bit chaotic as my heart kept on going into AF) but not for the second, which seems to have gone better than it might have done, with all objectives achieved.

[meadfoot]

Thank you Rellim, Yes sooner rather than later makes good sense and yes life does go on hold no matter how much we try not to let it.

Should have been on a Caribbean cruise this week and next with friends but it was not wise given the symptoms I have when my arrhythmias kick in and am miles away from hospital in the middle of the Caribbean Sea. Hope to hit the cruise circuit again in the fullness of time. Never say never! Life is for living 'drink it while its fizzing' (just need to get my fizz back).

Take care

Dee.

[Maitha]

Hi

Every time it read any of your posts it looks like your medical condition is similar to mine

I'm scheduled for my second ablation soon on first of April , first ablation treated my atrial flutter , now I need to treat my other irrethemia since I'm having few others and my EP doctor is trying to figure our most symptomatic one for me to treat them , he informed me clearly he can't treat all since it is not possible by ablation , but it is possible to treat two or three areas only

He also informed me that my case is unique since I had two earlier heart open surgeries and minor leakage in mitral valve with artificial aortic valve

I forgot to ask about type of ablation I'm going to have

Wish you the best

Regards

[meadfoot in reply to Maitha]

Hi Maitha, Thank you for your post. I have been wondering how you are getting on in America on your quest for some treatment solutions. Yes we do seem to have parallel conditions so we can bond together in mutual support along with others on the forum.

All the very best for 1st April and I wish you well from here in the United Kingdom Blessings to you and your supportive family.

Regards

Dee.

[Maitha in reply to meadfoot]

Thanks dear , wish you the same