I'm new to this ..and im desperately looking for any help anyone can offer on theor experience of positive outcomes following surgical treatments when you've had the condition for 30 years but has become life limiting in the last 9 years. I'm on Riveroxiban and Betablockers at 7.5 per day , reduced recently from 10 due to insomnia. I'm 71 years old and I've been offered abilation ..cardioversion did not work.
I saw a consultant privately who told me due to the time I've had this abilation would not work..has it worked for anyone out there? or is there any other procedures out there which my NHS health region has not offered me ..I've been told this is all that is possible.
I'm now very depressed with the thought that I have no quality of life and it won't improve ..any help would be so kindly appreciated. 🙏 Many thanks in advance for reading my post.
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Yellowmango99
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Yes, many have had success in similar situations to yours with a surgical ablation such as Mini-Maze, as opposed to the catheter ablations performed by ep's.
MummyLuv , one of our members, has had one and can provide additional information.
Meanwhile, a second consult with a EP is always advised when the first says "no". I cannot speak to your specific case however, a failed cardioversion is not an acid test for ablation.
Certainly effective for some types of long lasting and persistent AF in otherwise healthy individuals, but with cardiomyopathy it is unlikely the OP would be a suitable candidate?
"with cardiomyopathy it is unlikely the OP would be a suitable candidate (for ablation) ? "
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We don't know the type snd extent of the OP's Cardiomyopathy, but in general, the literature suggests acceptable results even with HF patients and often an improvement in the HF itself. Hopefully the surgeon or ep will concur.
Thanks for the tag Jim, it’s worth seeking a consultation with a cardio thoracic surgeon to look at your specific case, it’s amazed me some of the cases that can still be supported by surgical ablation.
I see your PM so will send you details. Good luck and we’ll done exploring other options x
Hello there, since there is not enough information about your case, it's difficult to judge. However, there may be a surgery for you. Have a look here wolfminimaze.com/. There is also a doctor in Tokyo who does almost the same where I'm going soon. In the 🇬🇧 there are some variations of this surgery which might help if you are suitable and there are people in this forum who did report about it.
Don't let yourself down because of one cardiologist's opinion.
Hello. I have hypertrophic cardiomyopathy and had been diagnosed with AF for 8yrs with various medications helping me through it, including the dreaded amioderone for 6 of them. 3 cardioversion. An Ablation wasnt considered likely to be successful because of the hypertrophic cardiomyopathy and I enquired about the mini maze and was also told that I wouldn't be a likely candidate. I was finally in permanent AF for 2yrs and like you it was affecting my quality of life and I was very down about it.
After much consideration ( and there was a lot) because of the finality of the procedure, I opted for the pace and ablate.
I had the pacemaker fitted September 2022 and the AV node ablated December 2022.
I'm now only on apixaban and no rate controlled drugs at all. Although I know that my heart is still fibulating , I cant feel it and I'm not aware of it.
I feel like I have my life back again.
I'm of a similar age to you (69).
Its definitely not for everyone but it has been right for me.
Hope you get a solution to this and like someone else has suggested, maybe ask for a 2nd opinion..
I had a successful 3rd go at ablation after 18 years off AF, 10 years ish in constant. Cardioversions only ever achieved NSR for 24 to 48 hrs. My third go was a long shot and I'm so grateful My EP and cardiologist persisted.My cousin had a very successful ablation for cardiomyopathy (HOCM) which was life changing for him. Only needed one.
But there are other options if ablation is not for you.
Enquire about Pace and Ablate. It will not always stop the AF but as Nannysue says it will regulate your pulse so that your quality of life will improve.
I went down that route but the pacemaker I was given actually stopped the AF so I have never gone forward with AV node ablation.
There is hope for improved QOL but do go see someone at specialist arrythmia clinic rather than a general cardiologist. It is often worth paying for a private consultation so do your homework as which specialist does this procedure in your area.
You are bearing a heavy load. It's such bad luck. There's no magic wand, but your doctor really does need to try harder. Have you asked if there's anything can be done beyond what has been, or whether some form of "talking therapy" (as it's weirdly called) might help?
~Just a brief message to say I am thinking of you as I am in slightly similar situation.
My Cardiologist more or less indicated there was nothing more to help my situation & patted me on the back as I left the office - any hope dissipated rapidly.
A 2nd opinion was sought recently (suggested by GP & another Specialist I consult for different issue).
Absolutely best advice and have since been blessed with an urgent appointment + follow up next week
I will know more where I am heading but at least I now have hope....
I think it is worth looking into a mini maze which is minimally invasive surgery. A lot of cardiologists and EP’s around the country are not aware of this. Even if they are, options are limited as to where it can be done.
Others on the forum have had this done by Mr Steven Hunter, who is a dedicated NHS cardiac surgeon in Sheffield. You do not have to live in the area, you can choose to go anywhere in the UK.
I would suggest that initially you have a private appointment with him, which can be done over zoom rather than travel to Sheffield. If you are suitable for the surgery, he will offer to do it on the NHS.
It is best to get your current cardiologist to refer you, but you can refer yourself for a private appointment.
I am having this surgery, privately in London, hopefully soon. Hopefully, others on here will come along, who have already had the surgery done by Mr Hunter. They can tell you more than I can. MummyLuv is the expert on this. Have a look at her previous posts.
Don’t despair, if it can be done Mr Hunter will do it.
Yes I have just had my hybrid mini-maze operation by Mr Steven Hunter on the 14th of November. I had done so much research before hand and was fully confident that it would work. I put in for a referral and asked my GP to refer me to Mr Steven Hunter. I met him once in February and Mr Steven Hunter was lovely and easy to talk to . I'm here now in Sheffield Northern General waiting for my tablet's to go home and I am now in normal sinus rhythm and if needed there is a second stage touch up if there is any bits Steven Hunter couldn't get too but I haven't come across anyone needing the stage 2 mini-maze. If you look on facebook mini-maze & hybrid mini-maze 4 atrial fibrillation in the uk on facebook there are quite a few of us that has had the mini-maze operation. Alison is very helpful
Welcome to the forum. We sometimes forget that procedures offered for arrhythmias are being developed and researched all the time. It’s a comparatively recent field and different cardiologists can have quite different perspectives. So as others here suggest, do get a second opinion. A private consultation gives you a half hour conversation with an EP and in my experience is worth everything.
I’ve been using this forum for around a year and I’ve learned more here than anywhere else about my condition, about living with it, and about the procedures that have been available to me. I have stopped being terrified of what the future might hold. Because if my recent ablation fails and I go back into persistent Afib then I’ll know Im not alone. And on this forum I’ve met people who’ve put up with far worse than I have and I’ve seen how people getting pace makers (which could well be my next step) seem happier and more alive than I ever am and getting on with meaningful lives. So hope you’ll stick around and let us know how it goes.
And look into the mini maze option! My EP said it tends to be reserved for those with longer term AF and those with heart conditions.
Oh yes I have Been reading the answers to your post and since I had the Pace and Ablate procedure last year I've never looked back. I do have plaque in my LAD, and as it wasn't 'flow limiting' the EP said it would be alright. Nannysue, CDreamer and many others on this site gave me the courage to go ahead and were so helpful. Like you I had AF for many years and I had reached the state where had almost given up it was affecting my life so. I still have AF as it's incurable but do not feel it and also it on occurs perhaps once or twice in 12 months and I might notice that I was a little more tired and lethargic for a day or two but nothing like the dreadful feelings I had before. I'm off all drugs except blood thinners and blood pressure. Best wishes to you.
Re the suggestions of others that you might inquire further about the mini maze procedure, here's a recent video by the inventor of the mini maze, Dr Wolf ...
Good work ozziebob, for letting a-fib sufferers know about the mini-maze procedure. I have just had my mini-maze port hole surgery in England on the NHS, on the 14th November I would do it all again to get to where I am now in NSR after years of persistent a-fib.
Hi, I'm your age, 71, and know what its like to lose hope, but I don't know much about cardiomyopathy. Maybe Cognitive Behavioral Therapy for the hopelessness? Really, best to you.
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