I joined the AFA forum some four years ago and had it not been for chance encounters, who knows where I would be today.
It started with an AFA post titled "Tim' Story". At the time of his post (several years ago) Tim was 55 and his story mirrored my own. In the article Tim mentioned that he watched an episode of Holby City where a mini-maze was mentioned.
Tim searched Google and had this to say:
"After reading of and becoming very interested in the procedure – thoracoscopic pulmonary vein surgical ablation - I took the liberty of emailing the doctor in Cincinnati, explaining my interest and my medical history. To my surprise he phoned me a couple of days later and talked me through the advantages of the surgery: high percentage rate of cure, low risk, and the additional benefits of removal of the left atrial appendage (dramatically reducing any further risk of stroke) and dissection of the ligament of marshall (LOM)."
Tim then searched in the UK and mentions "a surgeon in Brighton" (later known as Mr Jonathan Hyde) who was trained by the Cincinnati surgeon. Tim had the surgery and wrote: "Three years later, I am still AF free (not a single episode since surgery) and drug free."
I tried very hard to find out the magician who fixed Tim, to no avail, but two years or so later a lady from the US posted that she had the Wolf Mini Maze in Houston Texas and she was tickety-boo after her procedure.
The rest is my personal magic ride. I contacted Dr Wolf and found that the procedure was unaffordable without US health insurance, but that Dr Ohtsuka in Japan trained in the same procedure, and the cost is that of a "second-hand Mondeo".
Today is my 12 month anniversary since my surgery and in NSR since. Two days ago, at 77, I walked up 1,125 steps (15 x 75 steps) without any issues and normal heart rate.
My wish is to encourage any AFib sufferer who has been through the mill.
The answer is out there. MummyLuv and several UK members have already had it with Mr Steven Hunter in Sheffield.
All the best to us all and thank you HealthUnlocked (AFA Forum).
Saul
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saulger
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That's so good to hear that you're doing so well Saul. Gosh, it doesn't seem like a year ago you had your procedure!
I feel that because I've had 3 ablations and my heart has been tampered with the mini maze may not be as successful for me. I'm in constant AF now too with a heart rate flitting between 60-90bpm. What do you think?
Hi Jean. Thank you for your wishes and support over the past years. Sandi, who is the volunteer admin of the WMM FB group also had 3 prior ablations and has been in NSR for five years since her surgery. The longer you are in persistent, the success rate does drop, but it's worth messaging Sandi and she can ask. I can pass your message on or you can ask it on the WMM- Live AFib Free forum, which is free.
You should check. Dr. Wolf has had several patients with "fried" left atrium, up to 6 prior ablations. Look for his videos, he is mentioning it often. As Saulger said, the likelihood of success is smaller than with paroxysmal AF, however it's still pretty good and the good thing is that the heart can also partially recover. Dr. Ohtsuka is also doing very old patients, so if he says you are eligible I would recommend it.
Also just for the record Dr Wolf has done this procedure successfully on patients in persistent AFib for many years although as mentioned the success rate does go down but not to the extent that ablation does for persistent. I’m sure Dr Ohtsuka has also performed this on persistent patients. It was my understanding at least prior that minimaze patients in the UK were more apt to be able to get it if they are persistent. Worth some research anyway!
No need to be persistent for Dr Ohtsuka to do a mini maze. The success rate is lowered a bit with long standing persistent however. Dr Wolf restored NSR on a Dentist last year who was persistent for 10-14 years and he still remains in NSR.
Hi Jean. The actual mini maze you select is important here. Pulmonary veins and GP’s is far less likely to be successful with long term persistent (research led statement) and what is more successful is a procedure which also uses the cox maze lines on the back of the heart, possibly with a catheter follow up to complete the lines a surgeon can’t reach. All mini maze’s are not the same, surgeons have different approaches and sweet spots. X
Jean, like Saul said I had three failed catheter ablations prior to my mini maze. Worse for me were the meds however. They were debilitating for me. Having previous ablations does not disqualify you from having a mini maze and both Dr Wolf and Dr Ohtsuka have restored NSR in many who have been in persistent afib for 7+ years. It lowers the success rate a bit but you would have your LAA clamped or removed (Drs choice) so you never need an anticoagulant again and basically eliminate stroke risk. There is hope. Never give in to finding your answer.
Hi Jean. I just saw a post by Dancing135 who was a long-standing persistent AF sufferer. She had her mini maze ten days ago (possibly by Mr Steven Hunter) and she is in normal rhythm. This is what she wrote:
"Congratulations, Saul. One year on, where did it go!!. I would like to say thank you for helping me and making other Afib sufferers aware that there are ways back into NSR. I had afib long term persistent for many years. I had the hybrid mini-maze port hole surgery on the 14th of November. It was lovely looking at my Cardio watch the very next morning reading normal. Also, thanks to Alison and Carole, too for letting me know there are surgeons here in the UK that also do the mini-maze on the NHS like Mr Steven Hunter.Wishing you all the very best Saul, enjoy your travels xx"
congratulations, keep spreading the word. It might not be for everyone but for some me included (slightly different procedure) it was certainly a better option then a 5th ablation. Enjoy your AF free life to the max although 1125 steps sounds a drastic Anniversary celebration hope the view was worth the climb. X
Excellent, I wish you all the best for your AF free future. I'm looking forward to meet Dr. Ohtsuka myself personally. From my Zoom call with him I can say that he's very reassuring, right to the point and has already quite some experience with foreign "pilgrims". 🍾🎊
There are now more than a dozen outsiders. Canada, NZ, Greece, Hawaii, USA, Australia and more scheduled from the Philippines and elsewhere. If Dr Ohtsuka is positive, the outcome will be good. He errs on the side of caution. Good luck !!!
Fantastic!!! So pleased for you Saul. Keep spreading the good word. It's all about knowing your options. I know Mr Hunter has also operated sucessfully on people with several catheter ablations. Infact on the NHS I believe two are required before consideration for this surgery.....unless like me standard ablations are not suitable or advised. I was sliding down the hill of HF, classified as stage 2.I'm on my road to recovery. NSR all the way. I'm not straightforward due to cause being cardiotoxicity from cancer drugz/ treatment but still Im Afib free! Truly staggering!
It the drug Amiodarone that's caused me probs not the op!! So taking longer to bounce back up.
I definately do not regret it. It's lovely to have that quiet feel! Am thankful for this forum and it's lovely members for making me aware and supporting people like me on our journies. Thank u! Magic!!
A wonderful comment, Ange. AFib is psychologically damaging when one is always watching for the next episode, not to mention all the medications and prohibitions on food types, activities, etc.
I am so happy to hear that you are now AFib-free and recovering. All the very best for the future.
Thank u Saulger and for all your kindness and support. I don't expect to reach your dizzy heights of fitness. Amazing. I'm happy if I can eventually resume my walking treks out in the Peaks, swimming and Nordic walking. I've never been a sporty person.Long may being Afib free continue. Wishing you all the best and ongoing good health. Xx
My story is similar to your in that I found Dr Wolf and the minimaze due to Health Unlocked. I will be forever grateful to this site and to Dr Wolf and Bambi whose post I originally saw for my AFib free and med free life. Congratulations Saul on your anniversary and here is to many more!
What a lovely post. And who knew that Holby City could help us AFers? If mine returns I think this will be a good reason for calling in a lump sum from my (rather poor) pension. Impressed by those steps too. Happy Anniversary!
Good luck Val and thank you for your wishes. It is amazing what can be done with four small punctures on either side of the chest. The scars are very faded and I can't believe that I had heart surgery - didn't feel like it. For a while I kept thinking that Dr Ohtsuka forgot to do something because the recovery was that easy. Many good wishes with Mr Hunter and complete success.
love this post!! Happy Anniversary 🎉🎉 and wow I could never climb those steps without a raised heart rate even with a quiet heart, you are one fit man!! Enjoy every day my research buddy 😘
Thanks a million Alison. We did a lot of research together and you were so brave to go for it, 6 months before me. I have to thank Loukia for finally settling on a date that was good for us to go together. I have to own up that my heart rate was raised on doing the steps but at 110-120 at most and NSR all the way.
I do tend to go on and on about this, but I can't say enough about how the heart feels now compared to before the mini-maze. I am totally unaware of what the heart is now doing and it is bliss. Big hugs to your family.
Thank you Steve. When things seem good, I remind myself of the waiter who delivered the room service to George Best with his model girlfriend, lying naked on the bed covered with £50 notes, and asked: "where did it all go wrong, George?".
I’m so pleased to read you are still doing so well Saul. What a lovely, positive post. All the very best to you and here’s to the next many, many years of being Afib free 😊
Congratulations on your one year anniversary Saul. I share your gratefulness as it is now over 5 years since my Wolf Mini Maze. No afib, no meds and no anticoagulant after three failed catheter ablations. We are blessed and I’m happy to see more minimally invasive surgical ablations being available for my friends in the UK and throughout Europe!
So happy to hear! We too are forever grateful to have stumbled ups on this blog and found Bambi, then Dr Wolf. My husband also got ‘fixed right up’ - 😉 as we say in Texas - by Dr Wolf and he’s doing great! Praise God! NSR & no meds! Hope you keep on with your continued healing and enjoy every moment! Congratulations!!
That's such great news and I have had a similar experience because of joining this group and hearing other people's results through procedures, I went ahead with pace and ablate and it has transformed my life.
Thank you Saul for keeping us all posted and great to hear you are doing so well. You are a hope-giver and we need more like you pioneers of new procedures in the world.
Thank you very much. The thoracoscopic mini maze was pioneered by Dr Wolf in 2003 ! He even has a WMM patient who has been in NSR for the past 19 years. Good luck to you.
Congratulations, Saul. One year on, where did it go!!. I would like to say thank you for helping me and making other Afib sufferers aware that there are ways back into NSR. I had afib long term persistent for many years. I had the hybrid mini-maze port hole surgery on the 14th of November. It was lovely looking at my Cardio watch the very next morning reading normal. Also, thanks to Alison and Carole, too for letting me know there are surgeons here in the UK that also do the mini-maze on the NHS like Mr Steven Hunter.Wishing you all the very best Saul, enjoy your travels xx
Congratulations and Jubilations ! It's fantastic for you in sorting long-standing persistent. I will mention it to Jeannie.
Mr Steven Hunter is a master.
Soon we will be celebrating your one year anniversary. Thank you for your good wishes. I feel that I got a lucky break and can't stop myself telling others.
Thank you so much. Wouldn't it be great to clone Dr O. i get the feeling that if he was invited to another hospital, he would demonstrate his technique to spread the word. All the best with good health !
Many thanks, Jim. I hope that you are doing just as well. The first months need more rest and care.I hope that folks will continue to share what has worked for them. It is priceless.
Same as mjames1 above. On the subject of the Wolf mini-maze provoking both interesting and not-so interesting feedback on the Forum, what a great disappointment that all the contributions yesterday were lost forever when kkatz deleted her Post.
Yes, I agree. And perhaps we should also give a dishonourable mention to the "toe the party line" faction. 🤔
Re that Post deletion, I was so disappointed I emailed HU to ask if it was possible for the Poster to recover a deleted Post after it was moved to the archive (as HU says happens upon deletion) if they had "deleter's regret", but no, not possible. Well, I assume that means HU have just not ever included that as an option, which is also a shame, as such an option might well be useful. Such negative actions are often done at speed, and later regretted (at leisure).
Hiya Bob. I wouldn't worry too much about it. Not the first time. We can always direct-message each other and exchange data. I will be back in 12 months to, hopefully, share my two years in NSR. I was accused of having an Aston-Martin procedure, when it was a Ford Mondeo, and of touting when I was telling my story in Tokyo.Dr Wolf doesn't need promoting, for goodness sake !!!He is booked a year in advance and is wealthy enough from the royalties on the Atricure surgical instruments that he co-invented.
Why not give the man his due?
Dr Wolf invented the thoracoscopic maze scarring on a beating heart !!!
Before Dr Wolf it was open chest and on a heart-lung machine.
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