I have very recently returned from Japan and I thought I should add my experience of AFib surgery there to the forum for those who are interested.My surgery was just over 5 weeks ago at Newheart Watababe Institute with Dr Toshiya Ohtsuka.
I travelled to Tokyo from Canada, where I live, alone.
I was due to have surgery on 15th Jan, but tested Covid PCR positive and so it was delayed until I was negative.
I had the Wolf Ohtsuka procedure - robot assisted, laparoscopic minimally invasive surgery that ablates the heart externally and includes removal of the Left Atrial Appendage - on 24th January.
I stayed in hospital for 6 days post-op, the I spent another 9 days in Tokyo before I flew back, and I am now 5 and a half weeks post-op.
Prior to the op, I was paroxysmal AF, and very symptomatic. I was having an AF episode every other day and although it was slow rate, it was quite fiercely thumpy and very distressing.
The surgery seems to have been a success so far - no AF since the surgery.
I have had no serious issues, no pain, and no arrhythmia of any kind.
My surgery incisions healed up so amazingly fast that now I only have 5 faint little crosses on each side of my chest, level with my bra band to show that anything happened.🙂
I am about halfway through the blanking period now, so my heart is still healing.
I am still taking it easy.
No exertion, like stairs or gym. Just walking.
No alcoholic or caffeinated drinks.
Anticoagulant (Rivaroxaban) was discontinued prior to the surgery, and I will be able to run down my Sotalol once my heart no longer is healing at around the 12 week mark, all being well.
It was a really fantastic experience and I am very grateful to have been able to travel for the surgery.
I really did *not* want a catheter ablation.
Saul G from this forum was my introduction to the work of Dr Ohtsuka, so I am deeply grateful to this forum, and to Saul for guiding informing, and supporting me throughout.
I feel great and I am SO glad I did it. Losing the AFib has been like a miracle.
I am happy to answer questions if anyone wants to know more.
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Letofeyd
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I had my mini-maze in November by Mr Steven Hunter. I'm so greatfull to have had it done in the uk I thought that I would have had to travel to Japan to have the preseger. After having LSPAF I am now in NSR since the day of my preseger. You will be in excellent hands with Mr Steven Hunter and his team. Wishing you a speedy recovery.
I recently had my mini maze procedure with Steven Hunter in Sheffield. I am in my fourth week of recovery. The care there was exceptional. I am in NSR and hope it continues that way. I was due to travel to Japan in January but decided to stay in the UK to have the procedure. Alison (mummy love was such a big help and highly recommended Mr Hunter. I spoke to Mr O and thanked him for his help and he understood and wished me luck. Im so thankful to Mr Hunter for giving me this chance to live a normal life and live afib free.
No ablations. I meet the criteria for mini maze, mainly due to the fact that I cannot tolerate any of the medication, including anti coagulants. No point in having an ablation because that will not get me off these drugs.
Mr Hunter told me that the International AF guidelines will be changing this year to take into account the total burden of AF, which also qualifies me.
Yes, of course, I understand your choice to have the mini maze over ablation - I'm just wondering if I would have any change to qualify over here rather than going to Japan. Your reply imples that your AF burden is high?
I have had PAF for about 13 years. In the early years it was manageable, only lasting up to 6 hours at a time. I could usually identify a trigger. Last year it got much worse. My AF is still Paroxysmal and fortunately I do still self convert, but it lasts for at least 60 hours, then I usually get about 3 days free, sometimes one or two, before going back into AF. I have no PIP because I can’t tolerate any of them. It’s very debilitating and has taken over my life.
Another criteria for mini maze is two failed ablations.
I'm sorry to hear that, your situation sounds very difficult. I'm very early in my AF journey, first episode about 2 1/2 years ago, with an episode about every 3-4 months lasting 10-14 hrs, always self terminating. Eighteen months ago I was prescribed Flecainide as PiP which has been successful but over the past year my episodes increased to about three per month so I've been looking at what's my next step. I'm very sensitive to meds and anti coagulants upset my stomach (I also have coeliac disease) and Flecainide makes me feel awful so I'm pretty much decided on a mini maze. I don't fancy regular ablation at all, and I'm very opposed to taking an anticoagulant for the rest of my life.
OK, I can’t say whether or not you would meet the criteria for a mini maze in the UK. You have two options open to you. 1) ask your cardiologist or GP to refer you to Mr Hunter at Sheffield Northern General. You may find that your cardiologist isn’t supportive of this. 2) contact the Keyhole Heart Clinic in London for a private initial appointment with Mr Hunter. You do not need a referral for this option. This would cost £450. If you meet the criteria Mr Hunter would offer you the surgery in Sheffield on the NHS.
Either option would be by zoom or a telephone consultation unless you live close to Sheffield.
That's good news, glad you are recovering well. Would you mind me asking what made you choose the minimaze over an ablation? Trying to figure out what to do!
Firstly, success rate. 65% ish for catheter ablation vs 95% success for the WOP with Dr Ohtsuka. Secondly, no increased micro-embolli as a result of the WOP as there are from catheter ablation, so no increased stroke risk post-op.
Thirdly, removal of the Left Atrial Appendage in the WOP means no anticoagulants required *ever again* after the WOP.
That's it, in a nutshell.
Dr O is an amazing surgeon and the care at Newheart was brilliant. No regrets.
Very interesting thanks for posting. Hope the good news keeps coming and if I was you as an insurance policy I would keep up the important lifestyle changes.
If you are OK with it, I would like to know the cost as well....so I can start saving 😁.
Big congratulations on your success. Wishing you many years of great health and positive living.
Like you, I had the experience of a lifetime in Tokyo and came back with a mended heart.
I am now 15 months since my mini maze, in NSR since then and on zero medication.
My total cost for absolutely everything - including flights, accommodation, hospital, surgery, food - travelling solo in November 2022, was 18,000 EUR.
I see my bed in 3 different accommodations is wall to wall!
A bit usually but I can sleep anywhere. Remember sleeping at the end seat but on the floor behind it. On a train going across Java.
But awaiting a recall on my yearly neck scan where I had to have a CT scan last Monday.
Scanner saw something on Level 3. Passed it to the Head Radiologist who passed it on to my Surgeon with a direction to have a CT Scan and it was with dye.
Usual feeling as the dye spreads down and up.
Surgeon will be meeting with my Triage Team. He knows what I would want - removed rather than RAI etc.
Fingers crossed.
This will be my first international travel since 2019. 3 operations since. I thought this date would be plain sailing.
Its no wonder I have not see your postings for yonks - is it really 2 years!!!!! No AF. Discharged as a outpatient for Cardiac. I'm controlled on meds.
Hi Cheri. I wish you a safe and exhilarating trip to Japan. I hope that it all works out well. I found an inexpensive hotel with lots of room. It was 15 months ago when Japan had some Covid precautions and had just opened up to outside travellers. It all worked out well. If you would like Dr Ohtsuka's phone number to visit and say hello, I have no doubt that he will welcome you from the UK. Let me know.
Cheri. Dr Ohtsuka knows of the AFA site and is a very nice man. I wasn't thinking that you will have the procedure - just a friendly Japanese face who speaks good English.
I am a sucker for punishment and also wanted to sample Japanese life and travelled on the Metro, which blew my mind. They have computerised screen that shows you which car you are in in the train, how far to escalator and stairs, how many minutes to the next stop, which side the doors will open, etc. I could spend all day in the Metro.
The hospital is in a Tokyo Ward called Suginami-Ku. It is 10 minutes from Shinjuku station (famous zebra crossings going every which way), by car and not much longer on the train (if you know which one to get on).
This is a photo I took when I was in Japan in July 1972 !!!!
I used either bookings.com or hotels.com. The hotel rate in Nov 2022 were half of what they are now. Hotels and taxis can be expensive in Tokyo. Eating out is very reasonable. Please message me if you have any questions that I can help with.
congrats on your success and wishes for many many years of sinus ahead! . A couple of questions 1. How is it that catheter ablation can cause micro emboli and ablating from the outside of heart not? 2. Is the ablation RF and do they do pretty much the same procedure as inside the heart but obviously on the outside?
"Formation of microemboli during catheter ablation has been suggested as a cause for asymptomatic cerebral emboli. However, it is unknown which part of the process and ablation setting/strategy is most strongly related to this occurrence."
This is because the scarring of a catheter ablation takes place inside the heart blood supply and emboli can travel directly to the brain, as when a clot can form during an AFib episode to cause a stroke. In the thoracoscopic mini-maze the RF scarring is done on the outside of the heart accessed through the pericardium via small punctures either side of the chest.
The advantage is that the areas that need ablating are directly visible via the camera and also visible are the areas to be avoided, e.g, the phrenic nerve that controls breathing.
Dr Ohtsuka's scarring pattern on the surface of the heart.
Thank you Saul, really appreciate your explanation. Is the actual method of scarring the same in both Catheter and your OMM. The EP I met last month has suggested pulse field for AF and RF for flutter both via catheter. There are some places here in Australia that do a hybrid mini maze but it seems only over the last year or so.
Dr Wolf, who is the inventor of the thoracoscopic mini maze in 2003, believes that certain areas have to be scarred to block the errant signals. Dr Ohtsuka trained with Dr W and he does it a little differently. The heart areas to ask your EP about are the LOM (ligament of marshall, ganglionated plexi, and along the LAA (left atrial appendage). I have no expert knowledge but don't believe that a CA can access all these areas, hence the hybrid approach of both epicardial (outside) and endocardial (inside). Worth also asking the level of success after five years. From what I've read it is just around 50% for a single CA but some institutions have a better record of success.
I will ask thanks Saul I’m exploring my next options, at the moment i’m in Sinus and feeling fit and healthy with some low dose drugs but you never know what’s around the corner so I’m being proactive
Good for you. Took me almost five years after being diagnosed to bite the bullet. By the end, I fainted a couple of times when the heart stops (longest 8 seconds) as you convert from AFib to NSR. Good luck !!!
Thanks and that heart stopping sounds a bit scary! my AF seems to act differently in some ways. First had it 31 years ago then average once every 5 years, always self converted via exercise. That changed in 2022 about to go on holiday and was told to take drugs instead. I’ve since had a few cardioversions to get back into Sinus. I will try the Flecainide as a PIP next time rather than take it lower dose daily this seems to not convert me. Appreciate your input!
I'm sure you have watched Dr Wolf's minimaze videos on the Houston Methodist DeBakey YouTube channel. First Tuesday of each month (9 out of 12), with a reminder there's another one tomorrow!
However I specifically remember the importance of the "ganglionated plexi" being extensively discussed with a guest heart physiologist/researcher/doctor(?) via a live remote link in one of his past videos. I can't find it at the moment, but it's in his library of videos somewhere.
Like you, I'm currently trying to look around the next corner to be best prepared, and the WMM or similar is the only procedure I would contemplate (given I'm still able to choose).
Saul has answered well, but in simple terms, in the WOP no foreign bodies are introduced inside the heart or circulatory system at all, so no clotting response is instigated.Dr Ohtsuka also removes the LAA, so there is no chance of clots from that problematic location.
That all makes sense.. I wonder why the cardiologist suggested it was a more dangerous procedure compared to catheter. Maybe he doesn’t understand it given it’s only been in Australia 1-2 years
Many cardiologists and EPs have never heard of this surgery because it is outside of their field - only cardiothoracic surgeons are allowed to do it. There is huge ignorance and a lot of arrogance goes on.😏
MONEY! 😊 Not everyone is American, and if you don't have insurance in the US, then there is no way a normal person like me could afford the cost of any medical procedure in the US.
Having said that, with all due respect to Dr Wolf and to Houston as a city, I was happier with going to Tokyo on my own for several reasons.
I was more confident about the longer hospital stay post-op in Newheart ( I stayed 6 days post op), and I think that was crucial for me. I definitely could not have coped alone being discharged 2 or 3 days later, as DeBakey seems to.
The standard of care at Newheart was excellent.
I also felt extremely safe walking around Tokyo after my discharge from hospital, which I would not have done in Houston.
Tokyo was a wonderful place to recuperate - lots of wonderful things to see and do close by, very healthy food, super helpful people, a safe society, walking-friendly, and inexpensive.
I had an absolutely wonderful time, even though I was taking it VERY easy.
Dr Wolf trained Dr Ohtsuka, so their procedures are pretty much the same. International non-US patients are very well-served by Dr Ohtsuka.💝
Hi! I'm also a Canadian and I'm having my Zoom meeting with Dr Ohtsuka next Monday. I would like to know if you purchased any kind of insurance to cover complications or delays? And how long did you have to wait for the procedure after initial contact? Any travel tips?
I have many other questions, but I'll start with those. ❤️
I did a bank transfer. Very simple. Takes a couple of days.
Letofeyd . many many thanks for your story and experience with the OP, we are all here because of the support of each other, we do know how it feels when you almost give up and resignation because some EPs don't have the skills or don't have the same path as sergeants! unfortunately, the ones paying the prices are the poor patients who normally trust almost blindly what the specialists say to us! i am also seeking help to deal with my complicated case, then i have been through all technologies out there, the cryoballoon ablation, the RF ablation, and the PFA pulse field ablations, they all failed after 12 or 15 months! That is why i need to change paths and go for the Minimaze, can you please elaborate on how did you request the robot-assisted MINIMAZE ? is this an option? may i ask what are the costs roughly to undergo the op, i need to know if i can afford it, my insurance won't pay a penny for treatments outside Switzerland, many many thanks for your help,
I recommend saulger 's Posts and Replies for helpful Dr Ohtsuka minimaze information ... and he has mentioned costs as well. He travelled to Tokyo from Greece ... this is a link to his Posts ...
Saul has amazing info and is extremely knowledgeable, but I know he will not mind me saying that some is out of date now, as his surgery was some time ago.The cost, for instance, has changed.
Several of us - me included - are more recent patients. I am only 10 weeks post-op, so I can give up to date information.
I count him as a real friend now. 💝Saul has been amazing and encouraging, a reliable source of information, and great emotional support, and is my main instigator for me researching the procedure in Japan with Dr Ohtsuka and ultimately having that procedure 10 weeks ago.I try my best to support others as he has supported me, but I mostly do so through the Facebook page dedicated to Dr Wolf and Dr Ohtsuka's procedure.
I am happy to help anyone else considering this avenue, just as I have been helped.
As I have mentioned before (but why should you know!), I have chosen, for my own political reasons, to avoid anything to do with Zuckerberg, and consequently and unfortunately I have no access to MummyLuv 's Facebook group and the valuable minimaze information available there, nor the FB Group you mentioned (the same?). My only access to minimaze details is via my own online research and the Posts and Replies on this Forum.
Perhaps this explains my especially valuing the information kindly posted here by saulger , and of course MummyLuv .
So, if you do post similar illustrated reports of your minimaze experience here on the Forum, well, I for one, will be indebted. However, I imagine there are a growing cohort of Forum members who would be similarly thankful.
Keep up the good work.
PS. If you read my Bio, you will see I am currently a very low priority for a minimaze, but being an Aquarian, I cannot but help looking towards my possible future, and the minimaze makes most sense to me.
I understand the privacy issue is a big one.I usually prefer to talk to people over Zoom than post my intimate details.😉
Some questions people have are specific to them, or personal, or just crop up as we chat.You are more than welcome - as is anyone here - to private message me with questions or to arrange a video call so you can ask me whatever you want to know about my experience.
I am nit an expert, but can share what happened and what worked for me.
I had a fabulous experience in Tokyo with Dr Ohtsuka, and am indebted to this page and its members for their help getting me to that point.🌸
I just emailed Dr Ohtsuka and requested a virtual meeting.
As to whether you are a candidate, only Dr O could assess that.
You can tell him your history in your virtual appointment and he may request some more details.
The cost is currently 2.3 million Yen. That covers all hospital stay, meals, all tests, drugs, surgery and post-op check and removal of stitches, and any medication you may need until you return home.The only other cost is for the amenity pack, if you want it, which includes pyjamas ( several sets laundered for you during the stay) and toiletries you may need. But that is only about 10,000Yen, and is not obligatory.
Private message me, and I can send you some more details and you can ask me anything about my experience you might want to know.
Hi again, you see how anxious am, i on Friday evening mailed my report to Dr O, still waiting for a reply ! how long does he normally respond ! any idea ? i know he has others waiting ... but you know what i mean! can't wait!
Just relax, I saw your other reply just now as well and what came through in both is a "desperation", a "rush" with nature that is working against you. Easy for me to say I know, as I'm not in your shoes. But all advice is to learn how to breathe more deeply and slowly so that your anxiety is not making things worse for you.
Re Dr Ohtsuka's reply, I imagine Japan also has the same weekend days as we do in Europe, when overworked medical staff take a bit of rest and respite. You sent your report on Friday evening!
I'm sure a reply will come when it is thoroughly assessed. Japanese efficiency and precision included.
Hello. Many moons ago Mummyluv posted about a Swiss surgeon doing Mini Maze with a video of them interviewing a patient.
I saved the website but when I tried to access it just now it came up with an error. There is still a Swiss telephone number on the site which I can send via private message if you want.
The name was Professor Salzburg I think, although that of course is also a city in Austria so I may have mixed things up. Maybe your Swiss medical cover would pay for his procedure.
"Hi, many thanks for your reply. The professor you are referring to ( will. never call his name again ")is well known in Switzerland, but unfortunately not for positive reasons. He is often referred to as a 'butcher.' He may think he is something special, but in reality, I will never recommend him to anyone. This 'DR' performed my first ablation thoracoscopy, which went terribly wrong. I ended up spending 10 days in intensive care, and the operation had to be aborted due to bleeding. All he did was remove HALF of the left Abendage, leaving the other half still inside. It was an awful experience with this so-called specialist. He was eventually fired from the Hirslanden Klinik in Switzerland, which is supposed to have a good reputation."🙂🙂🙂
Oh dear. I’m so sorry to hear of your experience. In fact I’ve never seen such a negative post about a heart specialist before, but that is when this site shows it’s true value by advising us all and helping us through the maze(pun intended). Your comment also explains why the site page is down.
He is unfortunately active somewhere else under another brand, but if you wish I can send you his link, but only out of curiosity! do not recommend anyone to him, please! 🙏
I've just come across your post and as someone who now has exhausted all options this sounds promising. I'm not privately insured can you tell me the cost of this proceedure
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