An Update to Tokyo Update

[saulger]

It's 5 months today since my mini-maze with Dr Ohtsuka in Tokyo. Yippee !!! 🎂

I will save the song and dance for the 6 month milestone, save to say that I am in NSR each and every day for the whole day. I take zero medications and do not require an anti-coagulant as my left atrial appendage was removed.

Evelyn and I had big crises recently with the sudden death of Evelyn's sister, the financial meltdown of my bank, and my property about to be demolished.

I was anxious, stressed and sleepless, yet the mini-maze kept me on the straight and narrow.

I am able to exercise (I overdid the chin-ups and hurt my shoulder muscle) so I am now walking up and down stairs and managed 890 steps in a single up and down session. I can also drink wine and have no ill effects.

The scars are hardly noticeable and photos will follow next month at 6 months post OP.

What can I say; the AFA bio says that I joined the AFA site late 2018 (about 6 months after my AFib diagnosis). My Afib was paroxysmal and progressive to the point where it was almost every other day and I fainted at least twice when the heart paused for a few seconds when converting back spontaneously from AFib to NSR.

I could not live like that. I made a phone call to Japan. Sent my echo and ECG results via Internet. Had a Zoom chat, parted with the equivalent sum to a 2012 used Ford Mondeo, and bought a ticket to Tokyo.

I would not be lying when I say that I had a vacation in Japan with a heart operation thrown in, barring one week of diminishing suffering. Not all are as fortunate as I was. Some have nerve pain and some have atrial flutter that may require a cardioversion.

I had tachycardia at about 125 HR for 3-4 days, a few days after the operation, that converted spontaneously, and a short bout of AFib three weeks after the Op that converted naturally and none since. The HR is higher than before at about 65 HR when I am in bed and 72-75 the rest of the day. When I exercise vigorously I only get up to 120 HR.

I was very breathless after the OP walking up stairs, which is now minimal. I feel less strong than I did before the Op (evidenced on my rowing machine) and a little slower overall, which may be due to the trauma of surgery.

I posted yesterday (see SusieQ2023) a great interview worth watching with Dr James Cox, the originator of the Cox Maze. The original operation was open heart and the atrial fibrillation was treated as an adjunct to other heart repairs - heart valves, bypass - that necessitated open heart. Over time, the procedure was adapted and the pattern of scars (the maze) also changed slightly based on 30 years experience, and can now be done thoracoscopically as a minimally-invasive "mini maze" (in one hour in my case) on the beating heart, via small punctures on the sides of the chest.

Wishing us all the best and thank you for being there. Saul

[MummyLuv]

love this post!! Happy 5 month anniversary Saul!! Dr O is a talented surgeon and you and others have had excellent results 😍

I am now exactly 2 weeks away from posting a 1 year update.

It’s a hard decision to go with a mini maze when ablation is the recommended route in most NHS trusts and by virtually all EPs and I know you and I did a huge amount of research into this, sharing with each other along the way. Over the noon you are in NSR, no more fainting!

I only wish it was more accessible for everyone (Japan certainly appears the most affordable option for this able to travel)

Wishing you lots of happiness and long term NSR!!

[saulger in reply to MummyLuv]

Alison, thank you for your sweetest message. I appreciate you so much and you have shared your experiences unstintingly with all of us.

Coming back to Dr Cox's video: in 30 years, with more advanced tools and diagnostics, he predicts that all AFib may be treated via a catheter, but in 2021 when the video was produced, he states that just 45% of catheter ablations are successful after five years, whereas the Cox Maze has 90% success after five years. [if I misunderstood the video I stand corrected].

At my ripe age I could not afford to have multiple ablations and the AFA site led me to where I am today. I will continue to share the good and the bad and wish I was Rod Stewart to send us all to Japan...

[MummyLuv in reply to saulger]

his stats in the video are for persistent afib which he is talking about at the time. Paroxysmal has a higher success rate by catheter but either way totally get your point re one and done and knowing you can quickly get your life back 😍

[Lilypocket]

What a wonderful positive post! Let's raise a glass at 6 months 🙂

Wishing you all the best!

[saulger in reply to Lilypocket]

Many thanks !!!

[Hidden]

Fabulous news! That’s amazing and I couldn’t be happier for you!! You took a leap of faith & got your life back! Prayers for continued strength & courage in this crazy world we find ourselves in and that God will continue to bless you and yours! Congratulations! 🤍🙏✨

[saulger in reply to Hidden]

Thank you so much. I remember that you also had the mini-maze after reading Bambi's story, and encouraged me before I was due to leave for Japan. I hope that your husband is doing great.

[Hidden in reply to saulger]

Thank you! Yes, my husband is doing well and has been in NSR since his WMM! He’s getting stronger every day & got his life back! God is so good & Dr Wolf is a blessing!🙏🤍❤️‍🩹

[saulger in reply to Hidden]

I'm very glad. All the best.

[meadfoot]

Very well done. Enjoy your new lease on life.

[saulger in reply to meadfoot]

Thank you !

[mjames1]

Great news Saul but I was wondering about all those chin ups when you posted last time!

Jim

[saulger in reply to mjames1]

Thanks, Jim. I got up to 11 consecutive chin-ups and the heart held, but not the arms.

I am taking a break from the bar and doing stairs at the moment. Aiming for 1,500 risers by the end of May.

I hope that you are well.

[mjames1 in reply to saulger]

1500 huh. Are you planning on entering the yearly race to the top of the Empire State Building? It's also approximately 1500 steps. 1500 steps was also my workout goal about eight years ago and I did it about half a dozen times until I developed knee problems. Be VERY careful. Since, I've learned no more than one or two step workouts per week and should be coupled with strength training to build up the quads, etc. Lately, I started interval walking. 15-20 seconds all out and then 45 seconds easy. Repeat a dozen times or so. Sounds easy enough but now I have Achilles tendonitis Saul, we are getting older, remember that. LOL.

Jim

[saulger in reply to mjames1]

Thank you Jim. I'm not aiming for super quick time with the steps. It's more to get my lungs pumping well. I can hold my breath for 2 minutes, yet I was getting breathless with a heart rate of just 85 if I was carrying a weight on an incline. Much better now and I had no problems with the stairs.

Yes, Jim, we are getting old but we admit nothing !

[mjames1 in reply to saulger]

I had a complete workup for shortness of breath (SOB) including pulmonary function tests and blood work. Pulmonary function tests were good, so one theory was that it was caused by LPR/reflux, a silent version of heartburn. Not uncommon after an ablation. The other theory was long Covid. Anyway, like yours, mine is getting better.

Jim

[saulger in reply to mjames1]

Thanks, Jim. I must check it out. Thought that it may be related to the instruments in the chest cavity and the slight deflation of the lungs. I had it in the back of my mind that maybe nerve or lung irritation/damage.

[mjames1 in reply to saulger]

What you say sounds more likely than GERD, but at some point, if it doesn't get better, and you get to the throwing-spaghetti-at-the-wall stage, GERD is something to think about. In that case, a short course of PPI's might help or at least be diagnostic.

Jim

[4chickens]

Wow congratulations on your 5 month anniversary, it’s certainly an uplifting story. Hopefully I won’t wait much longer for my hybrid minimaze. Reading about others successes and some of the problems encountered has been both inspirational and a reality check.

[saulger in reply to 4chickens]

Thank you.

I think you must listen to what the surgeon says about the success and risks. I put my faith in many dozens of testimonials of past WMM patients. I listened to their stories and was ready for the pain, some persisting nerve discomfort, possible atrial flutter, pleural effusion, the anaesthesia etc, and a year long recovery period if need be.

In the event, I was feeling well just two days after surgery and nine days after surgery walked 2-3 miles along the Sumida river and up and down stairs.

A lot depends on your condition going into surgery. Previous catheter ablations, type of AFib (paroxysmal, persistent), obesity, co-morbidities, etc may make the recovery and success rate a little less positive, and the surgeon should be able to tell you.

If they accept you I believe that the odds are very good !

I look forward to hearing your good news in due course. All the best. Saul

[Paulbounce]

Great news Saul. Happy days for you my friend.

Paul

[saulger in reply to Paulbounce]

Thank you, Paul. I saw your post and promise to share interesting finds. Be well !

[dedeottie]

Really good news giving hope for the future of AF treatment. Onwards and upwards! X

[saulger in reply to dedeottie]

Thank you.

[irene75359]

Delighted to hear this!