Help!

[candyx]

Very scared of ablation after being diagnosed with paroxymal AF after at least 10 years of symptoms. Have been given Adizem XL, am hypertensive already on Ramipril but hate getting the attacks ended up in recuss the other week over 203bpm, sent by cardiologist- any advice please welcome as it is affecting my life greatly!

[SRMGrandma Volunteer]

It sounds like AF is having a major impact on your quality of life. When that happens it is time to look at the other options, and ablation can be a great option when you start to have episodes that are becoming impossible to handle at home. Lots of members on this forum have had excellent results from ablation and they will be chiming in shortly, I'm sure to help reassure you if this is what your cardiologist feels will work best for you. Study up on it so you are less afraid. Meanwhile, vent to us. Wait to hear from the ones who've been through it. Feel better.

[candyx in reply to SRMGrandma]

Thanks for your kind message - what treatment have you undergone if any?

[walke]

I can join you with the being scared of 'ablation' - I have paroxyal AF diagnosed in October last year after many visits to A&E & my Drs. Life seems to be getting harder to deal with so I returned to my cardiologist & she thinks that ablation would benefit me. I am just waiting for appointment with an EP in Oxford. The general opinion seems to be in favour of this procedure.

Good luck & try to keep smiling!!!!!!!!!!!!!!!

[candyx in reply to walke]

It is a difficult one to decide on just hate feeling like this with the worry of the next attack easy for consultants to say dont worry when it is not them going through it! I have also been told to go on Warfarin which I hate the thought of are you on blood thinners? Thanks for the answer and I will try to keep smiling

[TheStand]

Candyx & walke,

Welcome to the forum. Sorry I haven't responded but had a procedure today (colonoscopy) and spent the day yesterday doing the prep and have slept quite a bit today.

OK, About the fear to have an ablation.... I was scared to death at first. After 10 years of AF, When my EP first suggested it my response was an immediate "NO". That was almost 3 years ago. I chose to go with the rhythm control meds (even though the EP told me I would eventually have to deal with this) and was tried on 3 different meds before I found one that worked. For the next almost 2 years I was good. Having very few attacks and though the meds made me tired, I got used to it. In about October last year I was back to having attacks about 2 times a week. My EP said we could try a few more meds but assured me that I would end up on Amiodarone and that was not an option. OR He said again that we could try an Ablation. I took about a week deciding and the fear of being on Amiodarone was worse than my fear of the ablation. So I called him and we scheduled it for Feb this year. I was still very worried about it and studied, read patient stories and watched videos on youtube. All of those Made my fears fade away a bunch. I saw so many saying that it was very easy and painless.

OK My Ablation.... I got to the hospital at 7:30am and they put in an IV and I got dressed in what they called a gown (Something designed to provide the least coverage and most embarrasment humanly possible) and laid on the table. They asked a bunch of questions and then it was time to go. They rolled me into the EP Lab where it was about 200 deg below zero and put a warm blanket on me.

****************(Warning... This is going to get graphic)***************

I went to sleep.... That was it. When I woke up it was all over. My EP came in and told me that every thing had went great and they thought that they had got it. I had to lay in that hospital bed on my back for about 8 hours to allow the incision points to seal up. And I was released the next morning to go home. That is honestly the whole story. I really felt nothing an have had no real pain from the procedure (except for being sore from laying in that bed for a day). They told me to take it easy for a week and not to lift anything over about 10 lbs and not to take a bath for a week. I could shower but not get the incision area too wet.

After it was all over, for the next few weeks I felt a little tired but no other problems from the ablation at all. I had a few AF attacks in the first 2 to 3 weeks(which my EP said would happen) but they were really so mild that I could hardly tell that they were happening. My attacks were very severe before the ablation, So I knew that the ablation had done "Something" right away. I am 11 weeks past the ablation now and have not had an attack in about 8 weeks.

My EP told me from the beginning that I may require another one Called a touch up) if the first doesn't completely stop the AF and that over time (most say 7 to 10 years) the AF might return. If that happens I would not hesitate doing it again. I think back on it now and laugh about how afraid I was of having it.

I feel so much better now and am starting to do things without thinking about, worrying and waiting for an attack to happen. I an starting to feel free for the first time in 13 years. The Ablation was the BEST choice I have made in dealing with my AF.

I know this isn't just going to "get rid" of all your fears, but I hope you will do the same as I. Read watch and study the available info on ablation. There is a bunch of useful information on the main AFA website and also on stopafib.org.

One question.... Did your Dr tell you what type of ablation they were suggesting?

Again... Welcome to the forum!

Tim

[candyx in reply to TheStand]

Thanks for your reply and I wish you well after colonoscopy of which I have a had a few myself so I know what you have gone through bless you. Sounds very positive all what you have said and good to know. Who did your ablation? The only other thing is that my consultant wants me on warfarin for 6 weeks prior to the ablation which scares me also ? any thoughts on that ? Thanks again for your kind reply.

[Wendus in reply to TheStand]

Hi there just read your story, really helped me with my fears, as mine is next Monday, glad your OK 😊. In your pre op did they give you this wash stuff, and where did they tell you you had to wash before going to hospital ? I was told a few places but paper with wash says everywhere !!!

[BobD Volunteer]

Le me add to that and say that I went through all those feelings leading up to the point when I said yes. since which time (2005) I have had three ablations up to 2009 but been 99% AF free since then. If it ever cam back and they offered me another O would go for it. They have to tell you all the risk elements or you might sue them if it went wrong but to date I do not know of anybody who died from ablation but loads of people who had cripling strokes because of AF.

BobD

[candyx in reply to BobD]

Thanks for the reply good to know that it has worked for you, did you have to go on warfarin as been told that I need to before procedure which again I am scared off.

[BobD Volunteer in reply to candyx]

Normally on warfarin for three months prior to ablation and for a good while afterwards. It is not the evil people think and most of us have no problems. Just need to keep a steady diet and not binge on anything.. I've been on it about 7 years and apart from slightly brittle nails nothing untoward.

BobD

[feejbee]

I am due to have an ablation at The Royal Brompton Hosp.in London on the 3rd June. very scary but after having another AF episode in the last 24hrs I'd crawl on the table NOW if I had the option. I was diagnosed in Nov.'12 with Atrial Tachycardia ,then Paroxysmal Atrial Fibrillation and Flutter in Feb.'13 .I then had a T.I.A. and then followed by a minor stroke .I realise how fortunate I am to be offered the ablation so quickly and I'm really scared of it but I'm more scared of the consequences of A.F.

Will let you know how I get on .

Fi

[candyx in reply to feejbee]

Really wish you well please let me know how it goes I will be thinkng of you. So sorry to hear you had a minor stroke all very scary bless you. Have you had to go on Warfarin as my consultant has suggested this before procedure.

[feejbee in reply to candyx]

Hi Candy. Thanks for the good wishes .It's so frightening and it's only those that have the same thing can possibly understand what we are all going through. Yes I was put on Warfarin after I had the stroke which was about 8 weeks ago. It seems fine with almost no side effects that I know of .The only pain of it is that I have to have blood tests every week.

[BobD Volunteer in reply to feejbee]

Who is doing your ablation. I had three there under Jonathan Clague but also know Sabine Ernst as well.

Know most of the nurses there as well i've been up so many times.LOL

[feejbee in reply to BobD]

Hi Bob

Dr Tom Wong is the electrophysiologist who is doing the ablation. Never been to the Royal Brompton before, I live in Berkshire .Any advice or tips of does and don'ts would be most welcome. I also am seriously hoping that one go will do the job, sorry but don't fancy matching your score !

Fi

[BobD Volunteer in reply to feejbee]

Sorry don't know Tom Wong, maybe came since I was last there. I went up from Barnstaple North Devon each time ! Hope you get to see my dear arrhythmia nurse specialist Alex Wise.. Give her my regards if you do. She is a constant source of support and encouragement post procedure.

Lovely Wren church across the road by the way. Wards are not in the old building where outpatients is but in Sydney Street round the corner.

Do rest plenty afterwards and don't worry if you get some funny arrhythmias post procedure as this is normal. Alex told me to do nothing for the first week and not much more for the second.

Keep me posted. There are internet access computers in the day room.

BobD

[feejbee in reply to BobD]

Thanks for the info. I'll take your advice and will also pass on your regards to Alex if I meet her. Will take a look at the Wren church as well..

Thanks again

Fi

[Vdl1]

Hate to put doom and gloom into the equation.....first the good news I have had two ablations..they are a walk in the park...no prob at all ...no after effects no pain etc....now the bad news the results were a change to permanent af ......as a direct result of the ablations...which I was later told can happen ...so make sure you ask the questions before you decide which path to take re your treatment.....

[candyx in reply to Vdl1]

Will definatly take this into consideration so sorry to hear that for you hope you are doing okay

[feejbee]

Sorry to hear this. What is the next step for you ? Is it possible another ablation could cure it ?Or are you much worse off than if you had just kept to medication.

Fi

[BStanding56]

I have had two ablations at.Liverpool Chest and Heart Hospital, the first one was partly successful, but then needed another, 12 months later, On the whole I would definitly reccomend an ablation When someone is in Af and very symtomatic, the quality of your life is pants avd very frightening my qualty of of life was greatly improved, after an ablation . what has now happened with me is that I have passed out a few times and am waiting to have a pacemaker fitted and then a further ablation 8 weeks later. I will then be totally pacemaker dependant. I am not happy.about it. but don't feel I have much choice. Some people have ablations and are never troubled with Af again. If I had my time again I would have opted for the same treatment in my circumstances. The first I had under sedation, the second by general anaesthetic. What I would make a comment is that although over my ablaions reasonably quickly do think that it can take months for your heart to fully settle down.. Fi I would definitly go with it, you sound as if your having a real bad time of it, which I did. What I have picked up since 2009 when I first was diagnosed with Af is that the majority of people where it has been successful rarely join these forums, but people like myself where it ia an ongoing problem appreciate the support of people going through the same thing. I honestly don't feel there is enough emotinal support provided, it does take time to come to tems with the beast. If I can help at all Fi, email mex Beth

[feejbee in reply to BStanding56]

Hi Beth

Thanks very much for telling me your story. Sorry to hear of your need for a pacemaker but I really hope that it works well and improves your quality of life. You are so right how frightening AF is and each time I have an episode I seem to add more symptoms than I had with the previous attack and don't know how far to let things go before calling an ambulance particularly after the stroke. I have found this forum a brilliant help with providing information, particularly the very odd things that seem to happen which you think are probably peculiar to you but you always seem to find someone else who has been through the same thing. . The doctors I have seen have for the most part been extremely helpful but do not seem to understand the myriad of symptoms we all suffer from to a greater or lesser degree.

Fi

[BobD Volunteer]

Firstly yes it takes three months min for the scar tissue to form which is supposed to block the rogue impulses..

Secondly pace and ablate does not cure the AF. I have a friend who went this route and whilst it has prevented the dreadful, symptoms of tiredness etc it doesn't stop the feelings of fluttering in the chest as the pacemaker fires off the ventricle in a regular manner not the atria, so it doesn't reduce stoke risk at all and she will be on warfarin for life.

For the record Beth I had my last ablation in 2009 and have been 99.9% AF free since then but know how scared I was and try to stay around to help others. Maybe unusual but then I am! lol

BobD.

[BStanding56]

Bob as I am passing out, I don't have much choice but to go down this route.x Beth