Hi everybody I'm 58 and my 2nd ablation failed ,I've just seen the Ep and he's very reluctant to do a 3rd ablation although I explained I feel terrible He says because of intensive scarring he'd only give me a 20% chance of success. he's given me diltiazem hydrochloride tablets to try for now and take it from their
I feel like I've just been thrown on the scrap heap with my life falling apart , it's going to affect my work and home life , I seriously don't know what to do, being in permanent afib will ruin my future
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Steveh6874
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Research Mini Maze, Hybrid or Convergent procedure. A couple of our members have had these and maybe they will chime in. They are procedures that have a much better chance of working in cases that sound like yours vs catheter ablation. Only available at selected medical centers.
where in the Uk are you Steve? If you are in England there are surgeons doing a mini maze/convergent/hybrid on the NHS, they have a much higher success rate that catheter ablation when you are persistent and to access on NHS you usually need to have failed ablations which you clearly do. Sadly many EPs are not aware there is a surgical option and are unlikely to suggest to you.
If you are elsewhere in the UK then I am afraid the option is private in England only.
Have a look at my posts, I have shared a lot of info on what surgical ablation is that may help you. I also have a private Facebook group for those going through mini maze that may be helpful to you if you decide to progress, just PM me.
As Jim says it’s very worth you looking at. You are not without options.
You still have options - mini maze or Pacemaker as other replies detail.
I wouldn’t think it worth taking a chance on a 3rd ablation with those odds but you could get a second opinion? Ablation is rarely a permanent solution as AF often returns.
I had pacemaker after 2 ablations & AF returned, best thing I ever did.
Thanks for all your replies, theirs a lot to think about it's not very straightforward, the maze procedure isn't available at my hospital leeds LGI I think this is going to be very difficult to sort out
Are you able to travel? Bob travelled from Devon to London for his ablations which is a very long way. I travelled 1.5 hour drive to Liverpool for mine. I know that’s not as far but I was prepared to do it to get the EP of my choice. It sounds like you’ve given up and I can understand that as it wasn’t the news you wanted. Hopefully when you have had time to digest it, not feeling so upset you can start to look at options like the mini maze even if it means travelling some way. Let us know how you get on.
Just to add to the travelling story, my son flew from Durban to Cape Town for his ablation (1000 km) and I'm sure there are short domestic flights within England that could minimize the trauma, I recall flying from Cornwall to London once. Even those fast trains - I went to stay with my husband on his ship with when his ship was docked in Liverpool, before they went deep sea, and the train from London was amazing.
there are surgeons in hospitals a short distance from you that you can ask to be referred to, Prof Steve Clark in Newcastle or mr steven hunter in Sheffield. It’s worth asking for a consultation with one of them.
Although I’m ten years older, I got very similar news a couple of months ago - following my first ablation, I found myself using the very same words about being thrown on the scrap heap.
It took me a while to come to terms with, though I’m feeling a lot more settled now. The rate control is doing a bit better, and if that doesn’t work I might end up with the Pace & Ablate route. If I was your age, I might have tried to push more to see if I could get mini-maze as outlined above. You’re not so very far from Sheffield, and you might be able to go on the list for the operation on the NHS. (I’m in Scotland, which is more difficult.)
I felt so angry and disappointed at first, but in the end I realised that my EP understands more than me about my chances of success with a further ablation - so no point in the risk without any benefit!
I'm 47 and have had AF since my late 20s. I've been persistent for about a decade.
I had 3 unsuccessful ablations last year.
I instinctively knew they were a bit of a long shot but they gave it about a 50% chance.
I'm really grateful to them for trying but I agree with them that another go would be fruitless. So I am now having a meds change to rate control and heart failure meds as we have agreed nsr will not be achieved (so rhythm control drugs is not going to help). This is unlikely to work for me for any length of time so we are also discussing pacemaker. However they are reluctant to do this at my age. Maybe in a few years. I do worry about the future, of course, as I'm in or at least heading towards heart failure but I definitely don't feel I am on a scrap heap. I work full time, can still exercise (with adjustments) and there are usually options going forward for treatment. Advances are happening all the time.
Ablations are an important treatment, but not the only option.
You need a discussion with your cardiologist about next steps would be my advice.
Hi Steve, I’m sorry the ablation route hasn’t worked out for you. There’s a lot of emotional adjustment with such huge disappointment and life changes. And you have every right to be feeling like throwing in the towel. I feel pretty down after the relatively minor event of a cardioversion not working. But do consider the suggestions made above. Even look into the private route if possible for a consultation as you’d at least be getting a second opinion. There are many on this forum who’ve had pace and ablate and getting on with active lives. And others lucky to have found a route to mini maze. Good Luck and keep us posted.
Hi Steve , not knowing your full medical history it’s difficult to answer but I’m your age and have had AF since age 52 . I too have had 2 failed ablations , in that I went back into persistent AF following 6 and 8 months . Luckily I responded to a cardioversion in October and am now on the very long w/l for ablation no 3 . The EP doesn’t know if this will work either as it’s ablating posterior wall etc . Not sure he gave me odds though . Are you in persistent AF or is it coming and going as paroxysmal ? If persistent could you be cardioverted and put on anti arrhythmic and rate control drugs or has this already been tried ? If it was me I would maybe seek a second opinion privately if necessary and look into the mini maze as a future option .
Amanda that would be wonderful if it worked for him but unfortunately, my cardioversions fail than succeed. And you are right about the pace and ablate. That’s the one way he will get quality of life back hopefully. The majority of us who have done it are very, very happy and never thought we would feel this way again. The medication‘s they put you on to keep you in. The rhythm are not harmless. My cardioversion Christmas week failed after three shocks. My previous to that lasted 3 1/2 weeks. I was supposed to stay in the ICU to be put on medication to keep me in rhythm. They were keeping me for at least five days and monitor me 24 hours a day. What does that tell you about the medication itself? There are people on here now that have done it and I’m thankful I didn’t have to now. He is young. I hope they cut to the chase and do the pacemaker for him so he can get on with his life. I wish the best for him something that gives him happiness sooner than later, without the torture of so many procedures like I have had. His doctor knows him best. I hope he listens to him.
Firstly, bad luck. The feelings are hard to cope with. Yet, such feelings do change and very many people live with permanent AF. The key, as I can understand it, is rate control, and this is often achieved with beta- or calcium channel blockers or digoxin. Occasionally, these work but reduce the rate too far, and then a pacemaker is fitted to bring the heart rate back up to normal but to allow the good effects to continue. Some other drugs are also given to protect the long term health of the heart, such as losartan.
Have you considered exploring the minimaze, hybrid or convergent procedures. There are several centres offering this on the NHS in England , I had mine done 10 days ago in Sheffield. You have to be tenacious and a bit of a pain in the proverbial to move forward but it is possible.
I had a third ablation just 8 months after my second. It also didn't work and I'm now on the dreaded amiodarone. My Afib is paroxysmal but I'm very ill with it and am usually cardioverted within 8 hours. So far so good with amiodarone. Is this an option for you, I wonder? Good luck 🤞
Hi, I’m very much related to your condition as I also feel “…thrown on the scrap heap…” really (of course, I’m 85!!!) I’m on a permanent AF for many years and for a couple of years I’m seen an EP with hopes but as I’m still feeling horrible bad in general…short of breath…exhausted and so on after a series of hopeful tests…he has not answer to my condition. Previously, he has mentioned having an AV node ablation and a pacemaker put in but now he explained that it is too risky… the procedure is first, and then if the pacemaker fails, I will die because the heart cannot start over. ☠️🤷
Steve there can be other options and it’s not said it failed. He just missed the right spot. The odds of getting the correct area are not very good. I think I told you that previously. He could’ve ablate again and have the same thing happen. There is no cure it’s hit or miss with everything. You actually have a really good doctor. You should be grateful because there are others that will just keep doing the same things over and over again it’s not about your quality of life as much as it is about running off the bill. A good doctor will not keep doing something that isn’t working. There are so many new meds now. I just got my pacemaker in February. I have heart failure also besides a fib and a typical flutter. Yes I had my AV node ablated it that was the only other ablation my Dr would consider not that I asked for another. I am sorry that you are so young and going through this. Please don’t try to find a doctor willing to do more ablations. You’ve got a good one.
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