Very Scared

Hi everyone. My Cryoablation is scheduled to happen on Wednesday. Last week I convinced myself that I was going to cancel and then changed my mind again,

I decided to do more research and now terrified of risks, dr day pointed out in an article that damage to the phrenic nerve is worse than AFib itself. Now I'm petrified, hands shaking , can barely type. Is all this worth it when I haven't had an episode for seven months after losing 18 lbs . Why is this so hard ? Am I doing the right thing over and over in my head. Could it be possible I don't need this, could my AFib going away with the healthyifestyle ? Help please ? Gracey

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  • Oh gracey I really feel for you . I almost convinced myself I was better but then my head took over and I put things in perspective I thought I am only getting older if I put it off could be another 2years ,how many more CVs can I have how many more trips to ED so in my case the risk was worth it ,they take very good care of you don't try and be brave let them know how you feel it will be over before you know it,you have done all the research you know all you kneed to know now try relax go have coffee with a friend have someone over for tea watch a good film treat yourself to something nice and know we are all sending you good vibes, can't wait for your post on Thursday good luck marie xxx

  • Hiya Gracey,

    I know I've commented to you in the past but another take on your dilemma is a practice I adopted in my senior management days when faced with difficult and far reaching decisions, and it is this ..................... a sort of spiritual take on life ................. when in doubt - DO NOTHING ! Just sort of trust the universe that all will work out. In that way, whatever the issue is will itself provide the guidance you need and the issue will sort itself.

    Of course, in all your research you must know that AF is one of the most untrustworthy medical mongrels on the planet, so you must know that, as BobD and others have said often on here, AF begets AF ! Yet our own bodies are also one of the most incredible marvels on the planet - listen to your body.

    So far, and for me it is 7 years on 6 Jan 2017, I went for Cardioversion but by that time my heart had reverted to NSR of its own accord, I rejected the notion of an ablation preferring instead to listen to my body (body knows best) and focus on calming my vagal nerve through diet and a healthier lifestyle and I have now been AF free since April 2015, that's 20 months AF free. What I'm saying is that it took me 4 months of doing nothing but listen to my body when I came to the realisation that my body was saying, its food that's your problem Johnno, food !

    Yes, I know I have a tendency to be asymptomatic but my blood pressure monitor is approved by NICE in UK and also incorporates a feature which records AF and it is this device which tells me I have no AF since April 2015. I am now 72 and because I hold a PCV (Bus) driving licence I've had to have a DVLA medical every year since the age of 65. My GP conducts this medical according to DVLA guidelines and every year I have passed and my driving licence and PCV (Bus) entitlement have been renewed. I still work 30 to 40 hours a week depending on the tourist season and its not just bus driving but manually handling passengers baggage, suitcases of not less than 15 kg I can tell you. Why do I work, well money is a starter, but more important its a blend of mental exercise and physical exercise, I have to interrogate a computerised passenger booking system and prepare the next days work, I enjoy the social interaction with people, many of whom are half my age, I enjoy the social interaction with my passengers ... I enjoy driving ... I just enjoy life.

    Yes, I remember only to well my feelings when I was in AF, the feelings of a squadron of butterflys in a dog fight within my chest, or the mob of octupuses wriggling their tentacles away deep inside, or the feeling of a bag of worms wriggling away inside my chest .... and feeling totally crap, with blood pressure all over the place like a mob of cattle meandering through a field. None of that today. Nothing ! Even a nice boringly steady blood pressure of 126/70 and a heart rate of around 67 bpm.

    BUT ........... remember this ...... and it is important, thanks to the swift decision making of my GP at the time, I was sent off to East Surrey Hospital near Reigate in Surrey, UK - and within in 9 hours of onset I had a diagnosis and treatment started for pAF. I will argue the hind leg off a donkey that, that speed and accuracy of diagnosis was vital to how I am today.

    So, Gracey, I'm not making your decision for you but - sit down and making a long bullet point check list of all the things that describe your health, how you felt when you were in good health long before AF mugged you. Then tick each one that describes how you are feeling now on the brink of this decision and if you can score 75% or higher, then you have your decision. Yeah - ain't very scientific I know but its a start !

    Apologies for the rambling post.

    May the force be with you.

    John

  • Out of interest John, when you were diagnosed with Af at the East Surrey, and treatment was started, what was the treatment and are you still on it?

  • Hi Annaelizabeth,

    I was admitted to A & E, they were waiting for me on my arrival, taken in , questions and answers etc, usual stuff. Dr. did loads of stuff including ECG's (as you'd expect), Heart rate 160 bpm, initially diagnosed with Atrial Flutter, which shortly then converted to Atrial Fibrillation. Then Dr said to me they were going to drip into me a drug to get my heart rate down and it would feel like I would be dying, but don't worry you won't. I think this was Amiodrone but not sure now. It did feel like I was dying I do recall but then they administered a second dose and I felt worse. However, after this second dose my heart rate did start to fall, but only, slowly. I was later to transferred to the CCU and kept there for 24 hours at which point they started a wide range of tests. As my heart rate crept further downward I was moved to an ordinary ward. More and more tests including heart ultrasounds which confirmed an enlarged left atria and was kept in for a total of 6 days. Prior to AF my medication was Bendroflumethiazide, Ramipril and Simvastatin. In East Surrey the Cardiac Consultant changed it - dropped the Bendroflumethiazide, , retained Ramipril and Simvastatin, but then added Warfarin, and Bisoprolol. since then my GP here down in Cornwall has added Felodopine. And that's it, so, apart from the meds that were deleted from my party bag and added to it, my medication Is exactly the same as when discharged from East Surrey. The Amiodrone has never ever been re administered once my heart rate dropped down below the 100 bpm mark. It continued downward and now is steady at 67 bpm. Occasionally it drops down below 50 bpm and I feel cold but that's all. It always rises again.

    Hope that answers your questions.

    John

  • Yes it does, thank you. So I guess you are saying that as far as you are concerned as your Af has been controlled by drugs, you feel as fit as a fiddle, have a very fulfilling and good quality of life, that you personally would not go for an ablation. And I have to say, for you, you are probably right!

  • Just to elaborate ... Warfarin assists in stroke prevention. Bisoprolol keeps my heart rate at a level which enables my body to function in a way that I am happy with (QOL), Ramipril and Felodopine assist in keeping my blood pressure spot on and simvastatin keeps my Cholesterol low. Diet and lifestyle work in conjunction with the whole mish mash but most importantly they help keep my vagal nerve calm. Once that nerve destabilises I know I won't be much different to how I was in the beginning and how other sufferers are now. Its a bloody great balancing act of various components of the body and one which gets NO support from a modern GP or the modern NHS, or western medicine in general.

    For goodness sake - GP's are mostly the most inappropriate people to discuss symptoms of AF with, they are just not up to speed. Research into causes of AF is just about non existent - the Cause and Effect concept - doesn't rate consideration. OK so you have a thousand (or whatever) sufferers of AF, you'll have a thousand causes - but - until those causes are identified, examined, researched you are never going to get anywhere near to effective and lasting treatments.

    So all that's happening now is that a sufferer gets bundled off to a Cardiac Consultant or if they are lucky an EP, and away they go. the "auto electrician sets about trying to fix a faulty electrical circuit in the motor". So ablation is the buzz word everyone hangs on ...... but what happens when your EP says , sorry, I cannot do any more ablations on your heart, that's the maximum I can safely do. What then ? Treated for heart failure I guess. Was the sufferer ever told the best and worst case scenario ?

    Like so many cases in the medical world, if you can get a correct, accurate and prompt diagnosis, as early as possible after onset then the better chances you have of survival and return to QOL. Shame on the medical profession and the NHS for letting people go on 9 weeks, 9 months and even longer before getting a correct diagnosis and treatment started, As I said - I was 9 hours - why can't everyone get that. Why can't the NHS set 'the gold standard' for diagnosis and treatment of AF as being less than 12 hours, for example ! Lets face it, more and more people, including people under 50 are being diagnosed with AF - they deserve better.

  • Not to be a scaremonger and so glad it worked for you but Amiodarone almost killed me this is an incidence of what's good for the goose is not always good for the gander,goes to show risks in everything

  • Well I did say I was warned I would feel as if I was dying and certainly I felt like it. I'm glad that you survived the trauma and of course you are perfectly correct in what you say about goose and gander etc. - AF is all things to all people BUT nothing will change until a sound research project is undertaken on 'all things' and 'all people' who suffer this wretched condition. And that ain't gonna happen anytime soon in Britain.

  • I don't think it will happen anywhere in the near future we are ahead in some things behind in others

  • That will never happen anywhere in the world, ever. All things and all people is unrealistic and unachievable. Even if we were identical robots that would be unrealistic.

  • As my husband says, ' When in doubt, don't!' Of course you can still make lots of mistakes but you do not look back and think that you wished you had gone with your gut feeling.

  • The chances of your AF getting worse, occurring more frequently and lasting longer, are very high. Not a great prospect as you get older, as your drugs begin to lose their effectiveness and any hope of ablation as a cure disappears forever.

    On the other hand, the chances of something untoward happening during your ablation are very low...very low. But imagine life without AF.....

    After five wasted years I stopped listening to the detractors and like tens of thousands of others went ahead with my ablation. Believe me....it's heaven!

  • I hear you. I am facing a similar dilemma, and I'm not sure what to do. A 2006 study showed that phrenic nerve damage occurred in about 1 in 200 people. That study was done by monitoring 3755 consecutive patients who had undergone AF ablation at five different centres between 1997 and 2004, so the last patients were over 12 years ago. I suspect in 2016 procedures have improved, surgeons are more experienced, and risks are lower all around. But still - it's normal to be concerned.

  • I do understand how you are feeling I felt the same thirteen months ago, before my ablation. However it wasn't nearly as bad as I thought and for me, it was the best decision and I am glad I went ahead. I wish you well.

  • Gosh Gracey if you havent had an episode in 8 months perhaps you should ring your EP and let them know. How often did you have episodes before. You might be able to defer to see how you go. You can always call them if af comes back. Also read sanjay gupta re taking magnesium.

    I only agreed to have another ablation when my episodes were back to several times a week. Even then mine had settled down a lot after taking magnesium before the procedure, sometimes i wish now that I had postponed my last ablation as I had problems after, although it has settled down again now, thank goodness.

    If you go ahead with it, dont be afraid. The chances are good for success

    But I would urge you to speak to them and defer for a few months to see how you go as the weight loss etc seems to have worked for you

    Big hugs

  • Where can I find Sanjay Gupta? Thanks! Annette

  • Use the search box on this site to pick up the many (probably 15 to 20) posts that have been submitted on this forum.

    He is at York cardiology for an internet search.

  • In NY right?

  • No - the original York, England!!!

  • Ahhh! There must be two Sanjays! Is he a doctor?

  • Deep down do you really think losing weight and adopting a healthy lifestyle is going to be a complete cure? People who have always been slim and who do all the right things still get AF. Weight loss might have improved your situation, yes, and perhaps furthered the chances of a successful ablation too but is AF likely to be going away for good?

    If you don't go ahead, how cross with yourself and how miserable would you be next time AF visits when you realise that the way to improving your health means you will have to go through all this worry again?

    We understand the terror and the doubt. Some of us have been lucky enough to have had plenty of AF prior to the procedure and feel sure it is the way forward. It only helps with the doubt and we know it's a scary step to take.

  • On reflection, and having read Bob's wise words, I feel he is right to be suggesting you discuss it with your EP. If you were to go ahead after we have urged you forwards and then wake afterwards and find it hasn't gone well, you would have regrets and your decision should be based on professional guidance.

  • I'm not sure what you are saying.

  • I was suggesting Gracey should discuss with her EP and make a decision to go ahead - or not - according to his advice only. As it happens, the decision was taken not to proceed, possibly without further EP discussion.

  • Gracey I really do feel for you and know the fear. Sadly only you can make the choice but do understand that much of the data on which statistics are based is very old in terms of the development of AF treatment. Equipment and skills have improved greatly over the last few years even if there have been no major breakthroughs.

    Yes we know that life style changes can improve outcomes especially weight loss and diet changes. I fully understand your thinking and even as a great fan of ablation may well be having the same thoughts. On the other hand how do you know that you are not having events of which you are unaware? Many people do you know. By the way , what drugs are you on? Are you sure it is not those drugs keeping you in NSR?

    What you must do is discuss this with your EP tomorrow . If he is half a human being he will understand . Just accept that if you do decide to cancel and AF strikes on Thursday (heaven forbid) you are at the back of any queue and may have to wait some long time.

    Whatever you do please do not stop anticoagulation as your risk remains.

    Bob

  • Gracey...... your nervousness is to be expected, but the worst thing you can do is to go looking for reasons to frighten yourself. All procedures have a small risk factor, both those you might have this week and those in the future...... there may be occasions down the line that one.... or many of us...will have no option but to have an operation for other medical reasons.... which we cannot postpone. Life has a habit of throwing things back to us which we think we have avoided!

    Having said that, it was easy for me. I was so dreadfully symptomatic that I went almost dancing into the laboratory for my ablation and have absolutely no regrets.

    Good luck with tomorrow.... xxx

  • I had a Cryoablation in Dec.2015, it made so much difference to my life, I felt as though I was living rather than existing! Apart from a spectacular bruise in my groin and taking it easy for a couple of weeks I recovered well and am really glad I had it done. I was sedated during the procedure and it only took a couple of hours, and went home that night. I understand that your situation is very different from mine and I think the EP would only do the procedure if he felt it was necessary,there are so many people who would like to get their lives back. I don't think he would do the ablation if he didn't think it would help you. I totally understand your dilemma, reading the possible side effects is scary, but they have to inform you of all the possibilities, however it's far more likely that you wouldn't have any problems, I felt like you, but I don't regret having it done.

    Good luck. Mary

  • Gracey

    As an experienced ablation patient you may well have read my previous posts.

    I was very nervous too back in early September when I had my last ablation. In reality it is not as bad as we all fear and as long as you take it very easy afterwards and pamper yourself you should be fine.

    The success rate for ablation has to be high otherwise the NHS would not allow so many to take place so comfort yourself with that thought.

    Statistically it will be more dangerous for you to travel to the hospital than to have this procedure.

    You have a highly qualified EP who believes this is best for you but he/she will come and talk to you before he/she starts and I would take a few notes with you and ask lots of questions before you sign the consent form. By writing down your fears you can hopefully stop thinking about all the 'what ifs'.

    I hope all goes well we are all thinking of you.

    Pete

  • Lots of great advice and detailed responses for you to think on...but I will keep this simple. I had my ablation last week at St. Thomas' London and they could not have been more professional and accomodating. As people regularly state on the forum there is nothing to fear.

    Think of it this way...Ablation....Continue healthy lifestyle...WIN..WIN.

    Courage mon amie!

  • The latest research I have seen is that losing a significant amount of weight has halted a fib in many people. However, gaining it back increased risk again. Is it possible for you to ask for a date for surgery in a couple of months to give you more time to decide? I feel having a peaceful mind about your decision yields better results.

  • I learned that Afib does not go away but the progression from PAF to persistent Afib varies tremendously. It can be only a couple or few times a year to every 2 weeks and then become more progressive as mine was to everyday. Hence, I immediately went privately and was not prepared to wait on the NHS waiting list of about a year.

    May I suggest that you discuss this with your Consultant. Mine did not in any way pressurise me to have an ablation but he did say it was the best treatment for AFib. If you are having to take drugs then I would opt for the ablation. I have had cryoablation for Afib and there were not complications. Maybe because I don't have any other illnesses but otherwise fit. I think the risks are greater if you have other heart problems or your Consultant is not a good ablationist. I asked mine how successful has he been. I told me that he has been successful with all PAF sufferers. I hope I will not be the first unsuccessful one as I had my last ablation only 10 weeks ago and will have to stop Amiodarone. And he had two unsuccessful ones on patients with long-term persistent AFib. So he had success with patients who had not progressed to persistent AFib for very long.

    I read that one needs to have an ablation within 1 to 2 years for it to be success rate. Hence, that is why I did not wait when I started to get so many episodes. Previous to that I had an ablation for Atrial Flutter which was successful. There again I was having more and more episodes. I read that in about 50% of cases they were triggered off by AFib. So I have had two ablations this year. In April and in August. I feel safe because I was told that my Consultant had studied at Barts. In London. See if you find out first about your Consultant.

    In my case Flecainide and Sotolol did not work which I took after being on Bisoprolol. Because of that I was allowed to go on the waiting list. However, I have learned from PeterWh that you can have ablations even if the drugs work.

    Hopefully, I can come off the drugs as they in the long run lose effectiveness.

    Hope this post helps in some way.

  • How long would you have to wait if you cancelled and then AF came back more often? Over here in Germany with a specialist it takes 6 months at the most. And I can go on a waiting list, if I am prepared to come quickly is someone drops out. Have done both (but only one ablation), waiting list till I was called was 6 weeks, normal and planned was 5 months.

    Personally I would not have done it if I had those attacks once every 7 months. I had them weekly and very symptomatic. But it is a very difficult decision and different for everyone.

  • Hello, my Consultant has also taken courses regarding ablation in Hamburg. He says they are very scientific instead of some working in an ad hoc way. He has been on a course only last week. I know and presume others are always updating their knowledge and skills.

    He did tell me that in Hamburg the patient does not get to meet the person who does the ablation. So it is very much like factory work but then they get so used to doing it and make less mistakes.

    So I think I have been lucky to get the best of both worlds. Incidentally, I had worked for Deutsche Bank (Asia) in Hamburg for 2 years over 3 decades ago.

    I have been to Cologne and seen the Cathedral. Very impressive!

    Viele Grueße aus Devon.

  • With Sabine Ernst coming from being director of the robotic navigation clinic in Hamburg, I assume I'll be getting the same treatment😂👍

  • If she is working over here, then not likely.;)

  • I mean she will adapt to the English system but still bring good works. I am pretty sure you knew that by your icons.

  • I do not know about Hamburg. But I have to add that for hospital stays I am privately insured in addition to general health care so of course Prof gets more money so of course will take more trouble explaining....

    Yes, I did meet my EP (Professor) before, even twice and got to ask questions. Still, afterwards, after the ablation. I felt that a lot was not mentioned. And then I felt that I was getting on his nerves (though he tried not to show) because I did not heal as well as predicted and had worse arrhythmia than ever before for several weeks after ablation.

    I was even disappointed that I did not see him on the morning of ablation before procedure. He did do the procedure or at least was present as I had to get the protocol afterwards because of some insurance trouble and you can see there each nurse and doctor who was present. But it seems he keeps hopping between operating theatres.

    Not what I am used to. I have been operated on many times and always saw my doctor/professor before being anesthetized. Calms me down somewhat. Yes, the feeling of factory work was there, definitely. Do not know whether that is good.

  • This is very difficult for any third party to comment on because we all have tdifferent attttidues to risk, to medication, and in the end we have to make our own decision.

    Without going into any detail, the one thing I regret about my decision to go ahead with cyroablation is allowing myself to be rushed into things without giving myself time to weigh up the pros and cons and without having the courage to ask a few more questions of my EP who was very gung ho about these procedures.

    So my advice is don't be rushed. Gather the evidence. Think about the benefits to you of doing it and of not doing it and the risks of doing it and of not doing it. Ask some questions (of your EP and at least one other expert if you can find one). But then do please make a decision. Don't let things drift.

    It may be that your decision is to wait and see what happens for 6 months and then revisit the options. The next worst thing to being rushed into a decision by others is procrastination and then feeling that events get the better of you and that you find yourself regretting not having made a positive decision (to go head or not to go ahead) when you had a choice.

    In short - take control. Seek and listen to (evidence based) advice and then make your own judgement call.

    Good luck

    Sally

  • Gracey.

    I do understand why you are so concerned and it is irrelevant that you may be more concerned than some others because we are all different!!!! Unfortunately it is you that has to make the decision!!! I've read the comments made by others so will focus on some other points.

    Your EP will definitely have felt that you are a suitable candidate and that you will benefit from having an ablation because otherwise they wouldn't have suggested it!!! Ablations are a very specialist procedure where the demand outstrips the available slots and hence the waiting list have increased

    An opportunity of not being on medication apart from an anticoagulant is of benefit.

    Your general health is obviously good enough to have it now. If you cancel will it still be ok in 1, 2, 3, etc years?

    The saying AF begets AF is, I think very true and pertinent. No one can predict how long most people will take to traverse from paroxysmal to persistent. It can be a few weeks or many years.

    What I would definitely do is phone up arrhythmia nurse or the EP's secretary (actually maybe both) TODAY or if not then first thing Wednesday morning to tell them about your fears and that you want to discuss it. Don't make a final decision until after the discussion with them. Even then you could leave it for 24 hours. They would much rather have you pull out this week do that they can call up someone else yo fill the slot. When I had my ablation there was one fellow having a touch up which lasted about 2.5 hours and me and that took 6.5 hours. If I had pulled out on the morning that would have meant 1 to 3 others missing out.

  • Another thing is that the risks are often very theoretical and old and have not been updated for a long time. They also have not taken into accounts the fact that EPs are much more skilled and much more experienced than they were even 5 years ago let alone 10 years or more ago. In addition equipment has improved or is newer (eg Hansen Robot, mapping equipment, etc).

  • Also look up the NHS or NICE reports for the last count of years on all the ablations carried out in the UK and you will see that many of the theoretical risks and problems should have happened quite a few times based on the total number of ablations undertaken.

  • Hi Gracey, I do sympathise with you and just want to mention that my EP told me recently that there is a method they use to avoid damage to the phrenic nerve - it involves you being stimulated into hiccups, then from their observations and measurements they will know if anything adverse is in danger of happening as they proceed, if so at that point the ablation is abandoned to prevent damage. Hope this helps, Good Luck whatever you decide

  • damage to the phrenic nerve does heal well I believe ( no expert)

    Those in our support group who have had cryoablation have found it very straight forward

    Hope you have a smooth ablation Take care

  • Hi Gracey23, I was exactly the same could not make my mind up which procedure to have, scared of the outcome, so I asked the question on here. I took the advice given by BobD and I stand here 2 days after my ablation at LGI Leeds and touch wood feel great. The procedure was done by Dr Andrew James Hoggarth and he was the best, made me feel relaxed and confident in what was about to take place. It's early days now but I was in persistent Afib and to get 2 days has been a gift from heaven believe me. The procedure had it's moments but were short lived, I found when they gave me the morphine the worst but it only lasted around ten seconds. I wouldn't hesitate to have it again. Hope this helps.

  • Best health to you! Gracey

  • Brilliant you feel so good and a brilliant reply!!