I am now two months + 1 week since my Tokyo mini maze with Dr Ohtsuka, at the NewHeart Watanabe Hospital.
All is still good.
In NSR all the time, HR 65-75, and no ectopic beats. The scars are very healed (please see photo) and I am back exercising up to 95 watts on the rowing machine for forty minutes a time (550 Kcal / hour).
It was an expense and a journey to travel from Greece to Japan for this procedure, but I am more than satisfied, and believe that I got a bargain !
All the best to us all. Saul
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Great news Saul. Are you feeling fully 'alive' again and for how many years did you have AF? Had you had any ablations? If he worked with Dr Wolf I'm guessing that Dr Ohtsuka speaks English?
Hi Jean. I felt alive before my WO-MM, except when I had AFib every two days in September and October of last year, some lasting 24 hours - so no time left to feel good...
Funnily enough, I was 18 days AFib-free before I flew to Tokyo. I had a short episode in Tokyo after the first day of tests and possibly due to the contrast dye used for the CT-scan of the chest, and possibly the long flight >23 hours.
My AFib was diagnosed in 2018 and stayed paroxysmal. I was looking at a CA or a convergent procedure when I came across Bambi's post on the AFA site (us) about the WMM (Wolf Mini Maze) in Houston, Texas.
My episodes (135 HR) always converted with medication and I was never cardioverted. I was on 100mg Flecainide x 1 (at 18:00 every day) and bisoprolol 1.25mg only when having an episode.
I am still on cautionary 50mg x 1 Flecainide until the end of February, and likely none thereafter. I am not taking an anti-coagulant because the LAA was removed as part of the mini-maze.
Dr Ohtsuka is a darling man, as are all the staff at the hospital. He speaks perfect English, albeit with a Japanese tempo and transcription. The nursing staff use electronic translators that can get it a little wrong. After the Op they read out from the translator: "Teacher says no shower".
I am a little ashamed to say this, because I know how many of us are suffering with the AFib, but I really flourished in Japan.
It maybe somewhere else and if so maybe you can point us to it, but it would be great, as Jean eludes to, if for those of us who don’t know the background you could summarise your history and the lead up to your procedure. It would help understand what particular manifestations of AF this procedure may be appropriate and add context to your decision to go for it.
Tim, I will write out my story (will take a bit to put together and will post later).
In a nutshell, have a look what I answered Jean, above:
5 years in paroxysmal AFib, became more frequent and longer lasting at the end of last year, was considering a CA or a Convergent ( despite misgivings about success rate), came across a post on this forum by Bambi who had a Wolf Mini Maze in the US and was AFib free and doing sports. Contacted the US, cost too high (I am a self-funder), was referred to Dr Ohtsuka who does the same procedure in Tokyo, and is eminently affordable.
Went to Japan 15th November 2022, had it 22nd November 2022, discharged 1st December, walked 3 Kms on the 2nd December along the Sumida river, Tokyo, returned Athens 21st December. In NSR and completely free.
A whirlwind of an experience that I never dreamed possible. I am still in a spell how quickly the memory of my AFib is receding.
wow that’s great news hope it continues that way for you. Can I ask if you were in permanent afib? I was diagnosed in 2019 and I paroxysmal AF. I am seriously considering this procedure in future. I have been in contact with Mummyluv about her procedure also. Was it a similar cost to Mummyluvs’s if you don’t mind me asking.
I’ve just received a quote for the same procedure as mummyluv. And it’s actually come up even more expensive. Feel free to message me if you have any questions. Saul’s treatment in Japan seems to be the best value for money and Dr O is amazing. We’re all different in our AF as well, I’m in persistent AF and my hearts remodelling. I’m becoming more symptomatic and I have coronary disease. I’m now on a waiting list to have a maze under Dr Hunter. If I could of stretched I would of had it done privately without any doubt, but it was out of reach.
Thank you for your reply I did wonder if the prices would increase. I’m thinking maybe next year or possibly the year after. I have paroxysmal afib and was diagnosed late 2019in vegas. It was a bit of a shock but the anxiety and worrying that comes with it is just too much sometimes. I’ve been talking to Saulger and Mummyluv which have been so helpful. Are you on the list to have your maze with Dr Hunter on nhs? I’m sorry to hear you are having such a tough time with it and hope you don’t have to wait too long. Best wishes.
Saul and mummyluv are the best source of information! Yes I’m on Dr Hunters nhs list. With the current state of things i think how long is a piece of string in regards to waiting. I’ve got my fingers crossed for 3-4 months. I haven’t seen one cardiologist/ep on the nhs yet I’ve paid to see them privately. My follow up appointment for my EP after my cardioversion has just come and it’s in 3 months. So I’m not getting my hopes up about timelines, although I am gratefully to be on the list for mini maze.
I’ve had to pay private also to see my EP since diagnosis I wouldn’t have got to see him otherwise. I wanted to see him has he’s also has Afib. He wants me to take flecanide if it gets any worse, I take it as a pill in the pocket if and when I need it but don’t want to have to take it long term. So glad you are on the list for the mini maze on NHS didn’t think they done it. Hopefully the wait won’t be too long for you. Thank you for replying and your advice, much appreciated.
Good luck Daddy-O. Dr Hunter is an eminently experienced surgeon - you are in good hands. There is no one like MummyLuv (Alison) for research and acumen, and she is full of praise for Mr Hunter.
Thanks Saul … mummyluv is indeed a top researcher and I wouldn’t be where I am today without her knowledge. And I do feel in very good hands with Dr Hunter.
MummyLuv (Alison) is my FB friend and we are also on the WMM site and shared the research before she had her mini-maze in London. Alison was persistent and had the thoracic Cox IV mini-maze with surgeon Steven Hunter.
I had the WMM as performed by Dr Ohtsuka and it deals with both paroxysmal (done in 1 hour) and 95% success rate, and persistent (done in 1 hour :20mins) 88% or so success rate, after several years.
The cost is half of what it was in London for Alison, including all the related expenses (flight, hotel, Op, medical tests, medications, food).
Jim asked me why Dr Ohtsuka writes that the mini maze and LAA for paroxysmal patients takes 1 hour, and for persistent patients longer at 1 hour and 20 minutes.
Dr Ohtsuka published this slide (see below) that shows extra scar lines for persistent sufferers. My guess is that more errant pathways have been established and need blocking when AFib has become persistent.
Dr Ohtsuka ablation lines for Paroxysmal and Persistent AFib.
Thank you. I do feel inspired to do more in life (at 76) after the personal success (touch wood)...
The rowing (exercising) centres me psychologically. I love swimming and repetitive motion, which I could not do (and will try again in a month or so). I would get an episode and be worried the whole time.
All the best to you, and to all of us with this obstacle in our lives.
Check out MummyLuv on this forum. She had it done privately by Mr Steven Hunter in London, but he also does it on the NHS. There are also other surgeons in other hospitals doing it on the NHS. Please ask Alison about it !
Congratulations on your successful procedure and positive experience in Japan. I looked at the New Heart Watanabe Institute's website which is quite informative and their procedures clearly explained. We've been vising Tokyo annually for many years and, based on your account and the apparent success rate of their procedures, would definitely consider it as an option if it became necessary in the future. I had a cyro ablation last March and am doing much better. Still on 50 mg. flecainide twice daily which I don't mind. Also, it's wonderful that you don't have to be on blood thinners which I still take. Along with many others here, I will follow your progress and journey with interest.
I was in July Japan in 1972 for ten weeks as a student and it was a surreal experience - I never got the hang of the nuances of Japanese thinking. This time I was well prepared after watching NHK TV at home, and 50 years after my first visit fell in love with the experience.
It was a blast, as we used to say in the old days.
Thank you and everyone else who have shared in my success. It's early days yet but the heart is now not at the front of my mind and I am rarely aware that it's doing it's job quietly and regularly. A big relief.
Thrilled for you. You have grabbed life and said "yes, I can be well!". Thank you for sharing. Let us hope that this procedure will become more available.
I hope so and I hope that it will hold for many years. Japan is not a cheap place to live and if they can make such a complex procedure so affordable, why can't other countries follow?
I think it was very brave of you to travel all the way to Tokyo for this op. Congratulations on the result and hope it continues. Perhaps by the time my afib gets bad enough to need any procedure they will be doing this at Bordeaux.
Thank you very much. I did not find the trek daunting, and was looking forward to Japan.
I've read Dr Hans Larsen's book: "Lone Atrial Fibrillation- Towards a Cure". Dr Larsen was a sufferer and he tried everything, and I mean everything. including having all his amalgam fillings replaced, and only a catheter ablation in Bordeaux sorted him out.
you are amazing Saul. You did so well. Your scars are almost nothing at such a short period of time. Mine are not even visible and it’s going on 5 years for me. I still pinch myself everyday that this nightmare is over for me and now for you as well. Too much life to live and not have to worry about what our hearts will do today. Along with Mummylove who had her procedure in the UK (and is doing splendidly as well) you having your procedure in Tokyo and me here in the states I just want people to know there is hope, there is help and more Drs are doing surgical ablations. I wish NSR for all!
well, I wasn’t windsurfing two weeks later, lol. Bambi was an overachiever for sure but I did well and a fairly easy recovery as yours was. Remain thankful everyday.
Thank you very much. So many good wishes. Must go more often...
So wonderful to hear! I’m so happy you had such amazing results!! My husband’s mini maze was 5 months ago tmrw and he too is in NSR and doing excellent!!! Sending prayers for your continued healing!❤️🩹
Thank you !!! Isn't it great? The biggest blessing for me (apart from the steady rhythm) is that the heart is so quiet in my chest. I am not aware of the beating heart, unlike before.
Good luck to your husband. We are all one community who are trying to rid ourselves of the obstacle that AFib is in our lives.
Yes!🙌 It’s so amazing & simply life changing!! I pray more people find out about the Mini-Maze procedure and the help they need! My husband’s also lost about 70 lbs fasting since 5/1/22 and is walking twice a day now! He is so happy with his progress, his whole demeanor has improved and it’s like he has a new lease on life!! Blessings to you & prayers for a healthy 2023!! ❤️🩹
I agree Saul. That is what is so amazing to me. I no longer feel my heart which is amazing as I felt every beat before terrified that this is the one that’s going to throw me into AFib!
Saulger, what did the procedure cost? What tests did they perform pre-op? Were you forced into a nasal pcr test for covid to be admitted? I'm so happy for you!!!!! Thank you for all the information you can provide! God Bless!!!!!
Oh what wonderful news. As long as you were able to do it without hardship, and even with it, there is no price on health and quality of life.
I am about to get a pace and ablate I think. I will know more come Wednesday. I will ask my doctor about the mini but my concern is starting all over again with a new doctor. Each doctor wants their own set of tests done and everything else that takes time. I am running out of time trying to avoid heart failure. Mummy Luv and you are great support to anyone considering having this done. Right now for me it’s quality of life. Best of luck you have been through so much. I’m glad it is being successful.
Thank you for your good wishes. I'm sorry that you're not feeling well.
Have you messaged Sandi at the "WMM - Live AFib Free" FB group?
Sandi is a retired nurse and the admin of the group. She had the WMM 5 years ago and administers the group as a volunteer because she got her life back.
She has come across many cases where the "pace and ablate" was avoided. This is her link and joining the group is free. MummyLuv is a great contributor and a friend to the FB group.
I am so happy for you! I currently have AF every couple of days and so I feel for what you were going through before the op.I can only imagine how wonderful it feels to leave that experience, and the fear of it recurring every other day, far behind.🌹
I would love to have the same experience of freedom from it. Maybe I will investigate Dr Ohtsuka...😉
Thank you for your wishes. You know what it's like.
The only obstacles, of course, are the long trip to Japan and the cost. The last time I checked the cost of the operation was the same as a used 2015 Ford Mondeo...
I just found your post, hope you are doing great and still in nsr.
I had a CA here is US 3 years ago and was in NSR all this time. Recently I got couple of afib incidents, auto converted in no more then 30 minutes. I am interested in this new procedure I may need to do. I know that I can’t do it here in US as it is very expensive and insurance most likely will push for a new ablation or medication. May I ask you how much did you pay for the procedure in Japan? How much did you have to wait for the procedure?
Hi rv. I just celebrated 12 months in NSR and feeling well. When I booked for Tokyo the waiting was just 6 weeks but may be more now. I paid 2.1 million Yen at the time (15K Euro). Added to that you will spend for flights, hotel, out-of-hospital expenses for food and entertainment. No other costs. I will send you a link to Dr Ohtsuka's document a little later from my PC. Good luck.
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Update on my arm misbehaving in the pool
update to my previous posts. Cali
An update on my update
Update on my Ablation day at LH&CH
