AF Association
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Do I or don't i

Just had a phone call off dr Sabine Ernst saying I'm an ideal candidate for the new procedure clinical trial she's carrying out, and that she'd like me to be involved,

So my predicament is, she's explained the fact that the procedure carries a risk of stroke and other complications, however she said they're very small, but she said I need to weigh them up against the fact I've only had 2 short episodes of AF which stopped on they're own after no more than a few minutes.

So do I take this opportunity to be proactive and try to minimise the effect AF may play in my life going forward, or do I use a wait and see approach with my current EP.

I must admit I was all for going for it, but now the phone call has arrived, the doubt has set in slightly.....

From what I also gather dr Ernst is very well respected in this field , and it's an opportunity to be treated by someone as qualified as her.

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Hi Jugsy - In your situation with you only having had two very short episodes, no I wouldn't have the procedure. I've had three ablations and still have AF.

How on earth did you get yourself diagnosed as having AF with each of your episodes just lasting a few minutes?

Regards

Jean

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The first occasion lasted a few hours, it was caught on ecg in a&e, the 2 since have been brief lasting a few minutes each,

Dr Ernst said success rates for paroxysmal AF were around 70%, she then said this new procedure boosts that quite significantly with the current results they've seen, granted it's still a relatively new study

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Hi Jugsy - How long ago did you have the two hour episode?

Jean

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April 2015, so just over a year now, it was brought on by a strenuous bike ride,

I've also since found I have mild sleep apnea which I'm treating with cpap machine

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It's your choice of course, but at the moment in your shoes I personally wouldn't have any procedure carried out. My sister used to get short runs of AF when she was in her 30's and early forties and hasn't had any now for about 10 years. She's never taken any medication, just chose to ignore the episodes. You are aware that having a procedure done could of course leave you with atrial flutter as well. People say its easy to ablate, well not for me it isn't.

Jean

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Perhaps choosing patients with little in the way of symptoms will boost the success rate of the trial.

Have you actually been a patient of hers previously?

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My feelings are the same as @ jeanjeannie50 and @HappyJo. Sounds like taking too much of a risk when you have only had a very brief history.

I've also had 3 ablations and still have AF. I can't understand why some are so keen to rush in to get multiple burns made in the heart. Understandable if you are truly symptomatic.

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I don't think the risks are worth taking given your low af burden. If you were devastated with regular nasty episodes then yes but as it is I would be very wary. I don't think my ep who is extremely well respected and a leader in the field of arrhythmia would contemplate an ablation with your current level of burden.

Of course it is up to you. Why not call your usual ep and seek their advice. I admit Sabine Ernest trial sounds amazing and I do hope it proves a success for a arrhythmia sufferers.

I know people have to be brave and pioneering by taking part in studies and I truly applaud them I just wonder if it is a step too far for you with your current level if burden.

Seek further specialist opinion would be my advice. Good luck with making your decision.

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Thank you all for your views, and they are all listened to trust me.

I'd just like to be very proactive in trying to eradicate this condition before it has the chance to progress,

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Just to balance the arguments, and I know so many people are very cautious, Sabine Ernst is one of the most experienced EPs IN THE WORLD and has been carrying out or assisting with ablations since the first European ablation in Germany in 1994.

Remembering that AF is almost always progressive I would think very carefully about turning down such an opportunity. Some of the advances she has made have been amazing and although I have never been treated by her, have met and talked with her on several occasions and always impressed.

Bottom line its your choice but as I said in the interest of balance that is my view.

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This is one of my dilemmas bob, it's an opportunity to be treated and cared for by one of the leading people in this field, also I believe the royal Brompton hospital is one of the leading hospitals in Europe for its pioneering advances in technology

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No brainer to me Juggsy. RBHT tends to quietly get on with things without loads of razzmatazz and as I say I wasn't one of her patients though all my treatment was there. I know people who have though and all impressed.

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My question to Dr Ernst would be of all the people in the world why are you choosing me ?

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what is the new procedure?

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It involves ablation the sympathetic nerve endings aswell as the PV, also using new mapping technology to guide the EP in the procedure,

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Is that a ganglionic plexi ablation or am i on the wrong track?

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Yes that's correct, along with the standard pulmonary vein ablation

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Just heard off dr Ernst and it appears if I agree I'll be in by oct to be "done"

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Hello Juggsy75 I too have been contacted by Dr Sabine Ernst today and will contact her PA tomorrow and say Yes to being put on her trial. My AF is getting steadily worse with flutters and tachycardia and of cause the dreaded AF and so I will submit to this wonderful doctor who is a leading pioneer in the treatment of AF, and if for some reason it doesn't work then I can at least say it was not for the want of trying and maybe have to seek a different way but, I know from what I have read about Dr Sabine Ernst that she is a perfectionist in her field and so I have a 100% confidence in her and feel that my decision is the right one.

Who knows we might meet up at her AF Ablation trial.

Take care and I hope that you make the right decision for yourself.

Barbara

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Thanks Barbara, I wish I was as decisive as you, now it's very real the worry has kicked in, the what ifs, the fact it's an invasive procedure, the most I've had until now is a knee op from playing rugby, so this is a big deal

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And Barbara is a lot worse off than you are.

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Hidden , I recall the awful experience you had at Kings College hospital and I am very pleased that you have been given this opportunity.

Best wishes

Sandra

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Thank you Sandra.

My EP Dr Jonathan Clague of the Royal Brompton has referred me to Dr Sabine Ernst for this type of ablation as I did mention a year ago to him that I had read the trials that she was doing then which were I believe quiet successful and, that I was interested in being included in further trials by her he of cause kept his word. I am happy to be under her care and I feel that if anyone can get to the bottom of my problem she can. As for Kings collage it was such a bad experience which I don't think I will ever forget but, at that time I was in the same position as juggsy75 most of the time symptom free two years almost down the line the symptoms have progressed and feel that I would like to try and be rid of the AF if possible and, that is why I will have this ablation by the very talented Dr Sabine Ernst.

I have not posted on here very much as of late but read all the post every day and will always continue to do that as I feel that this forum is invaluable for those of us suffering with AF.

Barbara

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Hi I think I would like to try dr. Ernst too, could you tell me how you do and what happens, I too have tachicardia and flutters, I have had two ablations already and on 200 mg of flecinate.

Thanks so much for helping me out,

Debbie toblessed

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Hello Debbie, I found myself an EP at the Royal Brompton Hospital in London and whilst researching all that was going on in that hospital regarding treatment for AF I came across Dr Sabine Ernst and the trials that she was leading I asked my EP Christmas 2015 if I could go on her list and he was as good as his word and referred me to her. I would suggest that if you have an EP already then ask them to refer you to be put on her trial list or if not aske your GP for a referral. I am not sure if the candidates that she chooses for the trials are those that have never had an ablation before such as myself but that is something that you will need to look into.

Good luck

Barbara

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Thanks so much, I will contact dr. Ernst and keep you posted what happens. Say a prayer that I get accepted!

Toblessed to be stressed,

Debbie

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Hi barbara, I would love to talk to someone who had an ablation by dr. Ernst, do you know anyone?

Have a blessed day,

Debbie toblesssed

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Hello Debbie

In answer to your question I do not know anyone who has had an ablation done by Dr Sabine Ernst but I think it would be a good idea to read up on the trials that she is the lead head of and the type of ablation that is used at these trials. If you go to the Royal Brompton website and in the search box key in her name you should find all the information on her work and some feed back, or just enter her name on Google search and you will be able to find out everything about her.

I myself researched her in depth and that is how I came across her work. she is now my Cardiologist EP

I requested to be included in one of her trials for AF a year ago so there is a waiting list I believe .

Dr Ernst and her team have taken the Ablation for AF one step further in as much as ablating the nerve ends that reach the heart from the sympathetic nervous system which she believes once ablated there is a better chance of symptoms not returning . It is a little more clinical than that but, this is my interpretation but, please read up on her because her website explains far more in depth.

Barbara

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Thanks Barbara, I hope I can get on her list, I am willing to go to London and have it done. Three ablations might be the charm!

GOd bless your kindness to me,

Toblessed to be stressed, debbie

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Jugsy

There have been a number of very good points made above and you need to consider them all carefully. I remember how perplexed you were at first. You need to decide what's right for you short term and medium term and consider what's happened to date.

I would definitely contact your existing EP to solicit his thoughts and advice. After all he knows you more than anyone re your AF and in any event I would have thought she'll contact him

Also consider sabines comments

Good luck in your decision.

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When you have a normal PVI Ablation they give you a list of possible complications which could scare the pants of some people, including stroke, lung puncture so don't let that put you off. They need to tick the box you have been advised in case of legal complications. I agree you need to discuss with your EP. How did Dr Sabine know about you. Did your EP put your name forward?

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No I contacted her to learn about the new procedure, as I said I'd like to be proactive in trying to eradicate this condition

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So your gut feeling is to grasp the nettle and say yes.

If you turn down this offer, it will be difficult to get reinstated on the trial if you change your mind. If you accept the offer, you can still back out if you want to when you have had a chance to discuss it with your EP and have had time to think it over.

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So as I understand it you contacted her directly ?

Though my symptoms rarely bother me - I am interested in dealing with AF - I had an ablation for atrial flutter last November - still have some flutters.

I have read a lot about AF but want to know the long term picture - to live with it with it means what - heart beating irregularly - what is the long term prognosis to do nothing ?

So much to learn and decide

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I agree with much of what has been said.

As many will know I have had 5 ablations so have had the long list of possible dangers read out to me and given to me in writing each time. Given the numerous opportunities I I have had I have also read everything there is to read about them on the Internet.

I can't deny it is scary but the bad statistics are worldwide statistics and do not differentiate between underlying health conditions.

Added to this I asked how published statistics related to 'my' hospital and was told that not one 'really nasty' consequence had occurred at this particular hospital.

Write down all your questions and take them with you to your next consultation, then if you don't like the answers and still have cold feet you can still say no.

It is your heart and your health.

Best wishes

Pete

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I agree entirely with Pete re complications. I have no knowledge of any bad events at RBHT and have been going there for ten years. As I said above they don't shout from the roof tops like some places and I don't think any of their EPs have ever presented at conference (AF A Patients day) but that doesn't make them a poor risk.

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Here are some more details on the trial:

rbht.nhs.uk/media/press-rel...

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Wow, what do you have to do to get on that trial? I'm guessing I'm not alone in thinking, I've had quite a lot of runs of AF but leading experts don't come knocking on my door :)

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In Jugsy's earlier post was the link for volunteers and he applied.

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Oh aha, okay, sorry, I didn't see that one! Just sent her an email at the Brompton so who knows lol.

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I sent one last week but not heard anything back.

Also sent one to one of the other teams there who are doing another trial. However they replied saying I didn't qualify as I already had one ablation.

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Oh well, fingers crossed for both of us... I haven't had an ablation. I couldn't find Juggsy's earlier post oddly, it doesn't seem to be on his list of posts, but we can only wait and see I guess! Left to my doctors, I am guessing I wouldn't get an ablation unless I was in dire straits, and yet Bob and Beancounter often say it's better to have one earlier rather than later. Pity more doctors don't know this...

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Thinking about it now I am back home it was probably in someone else's post (including link) and then Jugsy emailed off.

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Thanks, Peter, at least now I know I'm not going completely mad lol.

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Sorry to have sent you on a wild goose chase!!!

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No problemo, at least I've sent the email. You never know!

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Hi Juggsy

I understand your dilemma, but I also think you didn't come here for us to tell you what to do, that has to be your decision and yours alone.

What you now know, is that Dr Ernst is very highly respected, a proactive leader in the field, but that this is a new procedure and that you would be part of the clinical trial.

You also know that regretably AF is often progressive, and that early treatment has a greater chance of success that later treatment, even if your symptoms are currently not that serious.

Lastly on the flip side many people do poodle along for years with almost no symptoms (me for example) but that only time will tell if mine. or others, progresses or I eventually die of old age still with the same symptonless AF. What we all know is that if it does progress then the chance of succesful intervention is much reduced.

The decision has to be yours Juggsy, it can't be taken for you. Talk to your loved ones, and family lay out the pros and the cons and then whatever you decide wil be the right choice.

Don't agonise over it, it's just another decision like all the others we take in this life, some turn out right, some don't and never regret, that's living in the past.

Be well, choose well

Ian

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Short of visiting Bordeaux (world leaders I am told) I would say you are in the best possible hands and if you have Lone PAF I understand the success rate is even higher - hence why they want you for their trial (sorry, a bit cynical I know). If I needed an ablation today that's where I would go.

It is then down to a very personal decision and I can only say in your shoes it sounds like it is too early but of course I don't have all your details and I don't share the belief of many that the quick 'silver bullet' is the answer.

All the best with your choice.

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Hi

Everyone has their own choices to make

NO is my reply

you have to weight out the worse of the two evils

And remember this is a clinical trail and they need people to try this produre on to learn from it

Do u want to chance this 😳

Many trials have gone wrong

Just because a health professional is respected does not mean they know everything

Please research well ask all the questions

And lastly not. all A F becomes permanent

Best of luck 🌺

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I would say no also. If this trial is successful then someone worse off than you can take your place and take the risk as for them the balance leans towards yes. Also, if successful it may be available to you when you "need" it.

Good luck with the decision and let us know how you do 🍀

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I think I was offered a place due to my condition being paroxysmal, I don't think I'm taking anybody else's place or dr Ernst would have prioritised them above me

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At the moment they have been under prescribed for the number of places available - the trial started months ago.

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Hey. Wasn't implying you were taking someone's place. Only that someone in a worse place than you might be more willing to take the risk. I had ablation as I was having a lot of episodes so choice was ablation or meds. Both had risks attached so went for ablation. Full support for whatever decision you make - making the decision us the worst part! Good luck 🍀

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Strewth, I left my phone at home today so only just picked these up,

Thank you all for taking the time to reply, my wife and I have some talking to do this weekend, friends have said go for it, it's a no brainier,

It's going to be a long weekend

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Jugsy.

I am not discouraging you - it is entirely up to you and your wife to have the discussions and ultimately YOUR decision only, as to what to do, one way or the other. I say that because sometimes spouses do not grasp the realities for many reasons either because they don't want to face up to things, they are too emotionally involved, they don't want things that could inconvenience them, etc etc. That was the case when my father was dealing with his cancer and he went on one of the medical trials of having high frequency sound waves blasted at the cancer in his liver. In reality that gave him at least two and probably three extra years. My mother was not so keen.

I'm afraid in situations like this most friends are definitely not in a position to advise because they will know very little about the condition, the options, etc because they won't have come across it before.

I have a lot of knowledge and life skills and I am a very analytical person and someone who relishes a challenge (I'm not trying to boast). However until just over 2 years ago I had never heard of AF. If one of my friends had raised this (ie AF or for that matter any other medical aspect for that matter) I would definitely not have offered an opinion without having done research and come to grasp with the affliction. Yes I would have raised some questions and directions.

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One thing that's in my mind is, striking early, Aldo our nhs service in Wales isn't as good as England, so this is an opportunity to be treated by one of the best in what I've read is one of the best hospitals

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Hi Jugsy - I believe, that in your heart, you have already made your decision. I hope it is really successful for you, please make sure you report back here on how it all goes.

Best wishes

Jean

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I honestly haven't, still back and forth, but thank you, I've emailed dr Ernst with some questions I have so waiting for the answers to those, the stroke risk is minimal, I'm just wondering if this could actually make my AF worse than it is currently not better

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Well, I've made the decision to go ahead, it wasn't taken lightly, and there's still some doubt there, however, my main pros for going ahead are, the chance to be treated in one of the best places there is in this country, by one of the most pioneering Drs in this field was a big factor,

Also whilst I know I'm very lucky in that my symptoms and episodes are very minimal at the moment, I understand that this condition is progressive and that by taking the bull by the horns and trying to sort it out while it's at this early stage statistically gives me a better chance of some sort of success

So I would like to thank you all for taking the time to reply and offer me your words of wisdom and support, it means a lot to my family and I

Here's hoping we're the start of something big in the breakthrough of af

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Hope it works for you - I am from Swansea - my Rother

Is Dr Barry at Morriston Hospital, Swansea.

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Same as me, lovely man

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You have come a long way Juggsy and I admire your final decision. It's been hard for you and you have had a lot of advice to consider. Very best wishes for your procedure and swift recovery and do please keep us posted at every stage.

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Thank you, and yes I will do, just waiting to hear the thoughts of my EP who's not in until tomorrow, also Sabine asked if I had any heart abnormalities, as I'm not suitable if so, I've had echo and all was fine, however I forgot to say I have right bundle branch block

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Hi to all !! I have been following Juggsy's posting on the forum . Very interested in your thought process . I too have asymptomatic PAF . Have just seen my EP an excellent man with lot of time for me Dr Simon Sporton I highly recommend him. He has many years of experience and research in the field of ablation . He is recommending cryoBallon ablation, and has suggested I should spent some time thinking about it . His success rate is 70-85% with 90-95% on round two.

Like Juggsy I have been in touch with Dr Sabine Ernst , she has asked for my medical history which I have supplied ,and am now waiting for her to come back to me.

Not sure which way to jump cryoBallon or Sabine's RF ablation with the use of new nuclear scan . I am a little confused why Dr Ernst is using RF ablation as oppose to cryoBallon since the latter has shown to give higher success rate ? I do appreciate the the new scan give far better mapping of the nerve endings . Any thoughts will be appreciated .

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I have read about her and the research etc

I had a stroke nearly six years ago due to AF and not being anti coagulated.

I might seriously consider it.

How did you managed to get considered for it if you don't mind me asking ?

Many thanks,

Susie

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Look on the RBH website.

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