Mini Maze 2 Year Anniversary

[Mumursa]

It's now 2 years since I had my mini-maze as part of a hybrid procedure in Sheffield.

I don't want to put anyone off, as, with other treatments, it can make a difference for a good percentage of people. I'm definitely in the % of people for whom it hasn't worked, so I wasn't expecting to have anything to celebrate today. The last two months have been particularly dreadful, with trips to A&E, holiday cancelled, I even got invited in to see my own GP in person when I sent the surgery a screenshot of my resting heart rate.

I decided to spend yesterday evening composing a letter to Cardiology listing the NHS time I've been taking up recently and asking if I could instead have a considered opinion on the way forward. Lo and behold, today, before I sent it, I received a text and an email and I am also told that there is a letter in the post, offering me a 'follow up' telephone appointment in October. I'm not sure what I'll get from it but who knows? I'll have to do some research in preparation.

Anyway, I am celebrating that the good old NHS trundles on!!!

[Hidden]

I’m sure you will not be putting anyone off. Because this procedure is relatively unknown, most who are aware and interested will have done their research and will understand that there is no treatment for AF which comes with guarantees. If they are in longstanding persistent AF with debilitating symptoms then it’s probably the best form of treatment to consider but sadly, not easy to come by. Try to remain optimistic and positive, I’ve no idea if repeats are offered or whether the risks would outweigh the benefits but you did what you did for all the right reasons and hopefully even if you remain in AF, the symptoms will settle to acceptable levels which is often the way with ablations. Maybe MummyLuv will have some suggestions for your appointment in October……good luck

[Mumursa in reply to Hidden]

Thank you. That’s a lovely response.

I feel very fortunate that I’ve had all the treatment I’ve had, and that keeps me positive. The follow up will probably be just to ask if the drugs have worked, but I’ve more or less decided what I think if further procedures are suggested - more of what I’ve had, no; - aflutter ablation, yes. Pace and Ablate was suggested in A&E and by my GP but I want to try all medication options before going for that .

[waveylines in reply to Mumursa]

So sorry to hear this Murmusa. It's a lot to go though for it not to work. You must be very disappointed. Sending you hugs. Medicine can be amazing but no matter how hard it tries it can never truly match nature. As someone whose just had a mini maze op and in recovery I can say Im aware of the limitations such a proceedure can offer but also aware like you are that the options are limited. As I was definately declining despite drug treatment & turned down for catheter ablation, my options are limited.

I really hope your telephone consultation offers you a way forward & a treatment plan you are happy with. Big Hugs xx

[Mumursa in reply to waveylines]

Thank you! Big hugs to you too! You stay confident and look after yourself, and fly high again xxx

[4chickens]

Don’t worry about putting anyone off, I think we all know when undergoing a mini-maze, hybrid mini maze or convergent mini-maze, that there is a chance of it not working, just as there is for an ablation or cardio version.

The majority of folks undergoing mini-maze have explored the other less invasive and easier to access options previously, with little success. We often present with difficult to treat persistent arrhythmias, or an intolerance to most medications.

Im sorry you are in the % that haven’t had the desired outcome. Like you I wanted to explore all my options before pace and ablate, not because I’m opposed to it but because it’s just considered the next step in a formulaic response to AF, and it scared me.

I’m so glad you’ve had an appropriate response from the good old NHS, and hope you get to go on your cancelled holiday.

[Mumursa]

Thank you for saying that. I’ve had a range of procedures and drugs now that haven’t worked for me but they do work for a majority of other people, so I would only encourage everyone to go for what they think will help them.

Sadly in my case the only thing my heart responds to is amiodarone, and I would prefer to stay off that.

[Mumursa in reply to Mumursa]

Thank you Mummyluv. It was certainly worth a try, and I'll be interested to hear what the EP says.

We did try dronedorone a few years ago, but my AF took a turn for the worse early on so I went back onto amiodarone at the time. It may be an option

All the bestxx

[MummyLuv]

how disappointing for you Mumursa, we all know from our research that there is a chance even with a hybrid (which I consider the daddy of the surgical approach) that it won’t work. So difficult though when it’s you it hasn’t worked for after going through the procedures and the related recovery. You know you are capable of NSR if amiodarone works, have they tried you on amiodarone’s wee brother Dronedarone? It does not have the same side effects as amiodarone but it’s not quite as effective either although still good.

Wishing you a productive discussion with your cardiologist and a route to managing AF without the need for pace and ablate.

Sending you love