From Hero to Zero

I have been away for the forum for over three years with beautiful persistent NSR however looks like its probably all over now. I won't bore you with my details but I am happy to answer any questions if anyone wants to ask.
I will get to the bottom line, I live in the UK, and have been completely out of touch will all things a.fib for three years especially ablations. It is certainly looking like I will need an ablation. I never wanted one but it looks like after thirteen years I have reached the end of the road. I probably can't afford to pay cash so will need to have it done on the NHS.
So my questions are as follows,
1) What have been the major changes and breakthroughs in the last 5 years in ablations,
2) Has the procedure matured to the extent that less skillful or less experienced ablationists can compete with the big names such as Natale,
3) Do anyone from the UK have any suggestions about ablations over here. I had a consultation with Professor Schilling in the UK about an ablation in 2006 but he may not be an option for me now,
4) The nearest Cardiac centers to me are Nottingham or at a push I may be able to get in at Leicester,
5) Should I just sell my house and go to France to Prof Michel Haïssaguerre!!!!

Thanks
Mark Robinson

Hi Mark,

So sorry to hear of your recent conversion back to AFIB from happy NSR. Its always a big disappointment when that happens.

However, you came back to the right place with the right idea to make your absence from NSR as short lived as possible. One question, are you now in persistent AFIB? Also, have you ever adopted The Strategy protocol for magnesium, potassium and other heart quietening nutrient repletion?

If not, that would be a great thing to dive into with gusto and follow through with real dedication over the next months while you are simultaneously arranging your ablation. Do both things on a parallel track so as not to waste time and to maximize using all the best tools available to you.

If you are in persistent AFIB, its a good idea to try at least one electro-cardioversion and consider going on an anti-arrhythmic drug too help the ECV hold NSR for some time leading up to the ablation as well.

Selling your house might be going a little far,, though Id consider it ...to be able to go to Bordeaux in your case and would try to do everything reasonable and even remotely feasible to make that happen, but only because I know so well the huge benefit of an elite operator, especially for addressing a long time many years afibber .. even though you've had a few years respite, at least symptomatically, it sounds like some underlying remodeling has been taking place in any event even during your NSR period and without 24/7 monitoring on board its impossible to tell if you have had any periodic silent episodes during that time as well.

Your instincts that the first interview you had 6 years ago is no longer your best option, that you mentioned, is right on the money in my view, especially if you have anything more than a straight forward paroxysmal case, as is almost certainly true with the 13 years you have had AFIB. You can PM me Mark if you wish and I"ll fill in in more detail why I feel that way.

If you can't swing Bordeaux and either Prof Jais or Haissaguerre, and you must stick to NHS I would for sure go see Sabine Ernst first and foremost in the UK. She is a smart and savvy ablationist and is making a very good name for herself in recent years.

There have been some real advances while you were away, though none to excuse us from the demand to make the best possible choice for the most experienced and skilled ablationist we can arrange for ourselves. That edict still stands, even though most boats have risen a good deal with the tide of new knowledge and improved tools over the last 5 to 6 years.

The almost uinversal adoption of adenosine and isoproterenol drug challenge ( universal that is outside of England and some other still behind the times EU centers) within an ablation to help minimize missed triggers and uncover reconnected ablation lesions during the ablation and re-ablate them ,has really helped improve results in recent years.

That and the recognition of the frequent need to fully isolate the posterior wall of the left atrium, and address other extra-pulmonary vein triggers, including in more advanced or longer duration cases of AFIB ablating and isolation the Left atrial appendage (LAA) for those who have established triggering from the LAA, are the main big improvements in ablation methodology since you took your hiatus from the AFIB world scene.

On the technology front, a number of big improvements have happened including maturation of irrigated water-cooled catheters, the recent introduction of contact force catheters and constant improvement in mapping and imaging systems has results in a real benefit in rising all boats in recent year.

While it is undoubtedly true that the more experienced EPs are even better now than 5 years ago, and that even newer less experienced EPs should be faced with a somewhat shorter learning curve now with all that has been learned and these great new tools at hand, it is still paramount that you not compromise any more than your finances and circumstances will allow. Again, if Bordeaux is out of the question and you must stick with England I would make a beeline to Sabine Ernst and not muck around with interviewing too many other EPs over there and just get confused.

In any event, read the Strategy and do whatever you can with that to help yourself as much as possible prepare for a successful ablation, but also make haste in setting up that ablation you can with the best and most experienced EP you can find. There still is no substitute for excellence in this field and it is not yet to the point where an inexperienced operated can do a Natale or Bordeaux-like job with any real consistency and confidence for yourself going in.

And whatever you do, do NOT settle for just some NHS assigned EP that you have no idea who it is that will actually be doing your ablation! Might as well go to Las Vegas and roll the dice at the craps table ...

Cheers!
Shannon



Edited 2 time(s). Last edit at 07/13/2014 06:10PM by Shannon.

Mark

I second everything that Shannon said, but just want to add one thing. In my experience some GPs will try to fob you off and tell you that you can't choose your consultant, especially outside your area, but if you are stubborn and insistent you can eventually get what you want.

Negotiating the NHS is tricky but 'Patient Choice' is supposed to be important according to politicians. So be polite but insist on Dr Ernst and don't accept anyone else.

Gill



Edited 1 time(s). Last edit at 07/13/2014 01:46PM by Gill.

Hi Mark,

Everything I've read/seen on Dr Ernst is very positive. See the link in my post here <[www.afibbers.org] for a bit more her impressive background. The rest of the thread, before my post, is worth reading, too.

Good luck!!

George



Edited 1 time(s). Last edit at 07/13/2014 04:26PM by GeorgeN.

Thanks everyone for your replies. I just got cardioverted again and I am in NSR but I can't go to sleep. If I do it will be back into arrhythmia. (Previous episodes have included atypical flutter and afib and typical flutter with some tachycardia from the pulmonaries). I am extremely confident I have had nothing at all silent in the last three years. I am now all or nothing with my flecainide (250mg daily) perfect NSR or this arrhythmia which has a flutter element that will not spontaneously convert without a DC shock.
So I have worked out the problem with the sleep, I just nodded of for a fraction on a second and my pulse dropped to 45 (I am wired up on the hospital) immediately my heart just acts up big time but by jumping up and increasing my heart rate I stopped the arrhythmia. I managed to do this about fifty times in the last week. For sure right now a pacemaker would sort me out by keeping my heart rate up, I am wondering about sick sinus syndrome. My wife says I have stopped breathing in my sleep for over one minute. It's all passive though more like central sleep apnea not obstructive. I am pretty sure I died in my sleep about 5 months ago and fought like crazy to wake myself up. I knew if I did not I might not come back. It was exactly the same feeling as when I had adenosine.

Thanks
Mark



Edited 1 time(s). Last edit at 09/20/2014 11:28AM by Robo11.

Hi Mark,

Tell the doctors about your apneas and request an immediate sleep study with a view to getting a cpap machine to wear whilst you are sleeping. The newer ASV type will help you breath through both central and obstructive apneas.
Can you get someone to bring you in some magnesium oil spray? I get it in the health shops. It might be a quick way to up your magnesium levels if they are low.
Last time i was in, i asked the nurse to give me a dribble of oxygen in place of my cpap machine which i didn't have with me, and that helped while i was sleeping. She saw the apneas as she had to keep coming in to reset the alarm on the monitor. Maybe you could ask?
Anyway, i do hope you feel better soon,
Regards
John

Thanks John

May I suggest buying a fan to blow directly in your face when sleeping while you wait for the sleep study/cpap machine.

lisa
__________________________

So much of medicine is looking solely down the wrong end of the gun barrel, and that is really a pity for all of us---Shannon

Thanks again for all your replies, had my second successful DC cardioversion in ten days yesterday. (I get flutter which wilI not self convert). Back in NSR (for now). Managed several hours sleep last night and I am in a much better mental place (for now).
Need to sort out this sleep issue.
Thanks again your help advice and concern is greatly appreciated.

Hi Mark,

Yes flutter like yours will not respond to drugs so don't let anyone in an ER try to use the Adenosine challenge on you again as some ER docs will want to do in order to rule in or out SVT versus Flutter.

You know its flutter so can spare them and yourself the Adenosine 'mini-death' scene which is not particularly fun as you well know too from your mention of it above.

The best thing is to get thee to a top flight persistent AFIB ablationist, mainly because they tend to be the best at chasing down and eliminating these atypical left atrial flutters.

And as usual, there is none superior to Dr Natale at this task. SO if you simply cant arrange to see him, then at least use his experience and methodology as a benchmark for selecting the best option you can arrange for yourself in your region or that fits your insurance plan.

Shannon

Hi Mark - another thing to watch for is that anti arrhythmia drugs can create or exasperate your sinus bradycardia. A cardiologist prescribed bisoprolol and when I did my research, the manufacturer warned against using it if you have bradycardia. I argued with him briefly before firing him and carrying on to have an ablation on my own ticket.

Another interesting tidbit is that, in the words of Pr Jais of Bordeaux, an ablation can favour those with bradycardia, as one of the immediate results of an ablation is a higher heart rate. I comfortably rest now in the 60s, whereas prior to the ablation I was usually in the 40s and even recorded one session at 35 bpm.
Ron

Are you JohnB the sleep apnea man from Australia with the tennis court in the back Garden?

Not me Robo, but i beta test the opensource Sleepyhead software that reads the data from cpap machines and displays the data in a very usable way. The chap who writes the software is an Aussie. If you get a cpap, you will find it really useful:
[sourceforge.net]
It also allows you to connect a pulse oximeter, which you can get from ebay, which records oxygen levels, heartrate, and plethysmography (waveform of the pulse), which i think is much more useful than a one lead type heart monitor.
[www.ebay.ie]
The graphs of your breathing patterns, pulserate, and oxygen levels can be displayed syncronized and clearly show up any problems.
Anyway, thats my only connection to Aus sleep apnea!
Sleep well, and prosper.

Thanks John. I think his name was John Bedison or something similar. He was into sleep apnea in a big way (think he had his own website.)
Thanks for your info

Mark

John Bedson. He also is a strong advocate of propantheline bromide for vagal afib.