A Happy Anniversary

[saulger]

Dear AFA forum family.

Isn't life wonderful?

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

[jeanjeannie50]

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?

Jean

[saulger in reply to jeanjeannie50]

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.

facebook.com/groups/4129396...

[MiniMeGreen in reply to jeanjeannie50]

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.

[Poochmom in reply to jeanjeannie50]

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!

[2018NSR in reply to Poochmom]

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.

[MummyLuv in reply to jeanjeannie50]

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

[2018NSR in reply to jeanjeannie50]

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.

[MiniMeGreen in reply to jeanjeannie50]

Hi Jean,

here is the complete description of Dr. Ohtsuka procedure including info how to contact him newheart.jp/pdf/WOP.pdf

According to this you should be eligible and his success rates of becoming AF free range from 93 - 52% depending on your baseline status.

[jeanjeannie50 in reply to MiniMeGreen]

Thank you.

[saulger in reply to jeanjeannie50]

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"

[jeanjeannie50 in reply to saulger]

Thank you Saul. I need to do some hard thinking.

Jean

[saulger in reply to jeanjeannie50]

No pressure !

[Tangalle]

Hello Saul

Gosh is it really 12 months. So pleased you are still in NSR and living your best life. Look forward to doing the same as and when it comes.

Very best wishes

Michele

[saulger in reply to Tangalle]

Thank you very much, Michele. I hope that all will work out for you.

[4chickens]

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

[saulger in reply to 4chickens]

It was up and down Carole. Couldn't do that many in one ascent. Congratulations on your mini maze and wishes for many years of peace. Big hugs.

[MiniMeGreen]

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". 🍾🎊

[saulger in reply to MiniMeGreen]

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 !!!

[Threecats]

Very pleased to hear you’re doing so well, Saul. That year has certainly gone quickly! Wishing you many happy years of NSR to come! TC

[saulger in reply to Threecats]

Many thanks, and the best to you !

[waveylines]

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!!

[saulger in reply to waveylines]

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.

[waveylines in reply to saulger]

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

[Poochmom]

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!

[saulger in reply to Poochmom]

Bambi is my heroine also ! The grapevine led us to our peace. Thank you and congratulations to you too. NSR and beyond !!!

[Singwell]

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!

[saulger in reply to Singwell]

Many thanks. We wrote about the procedure and I hope that you will have no need of it. Wishing you decades of normal heart !!!

[Mrsvemb]

Congratulations Saul on your 12 month anniversary of getting your life back. That year seems to have gone so fast.

I am still waiting for Mr Hunter to get admission rights at the Cromwell. Then I will be joining your little NSR club. Getting impatient now.

Val

[saulger in reply to Mrsvemb]

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.

[MummyLuv]

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 😘

[saulger in reply to MummyLuv]

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.

[Ppiman]

Hi there Saul! That was a good post to read. You’re in an wonderful part of the world and in good health. What better?

Steve

[saulger in reply to Ppiman]

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?".

Peace on earth would be nice...

[Ppiman in reply to saulger]

Indeed it would.

Steve

[Vicmeister]

What a wonderful story. So happy that the operation has successful and you are AF free.

[saulger in reply to Vicmeister]

Many thanks. I hope that you are doing well. Good luck.

[Teresa156]

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 😊

[saulger in reply to Teresa156]

Thank you very much Teresa. I wish you all the best.

[2018NSR]

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!

[saulger in reply to 2018NSR]

Thank you, Sandi. We have a lot to celebrate.

[Hidden]

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!!

[saulger in reply to Hidden]

Thank you so much. We are birds of a feather. Wishes that we meet up every year to give thanks for our good fortune !

[reinaway]

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.

[saulger in reply to reinaway]

Thank you. Like Tim in my story, I have the AFA forum to thank for discovering something that worked for another patient. Good luck with your heart !

[Rainfern]

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.

[saulger in reply to Rainfern]

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.

[Dancing135 in reply to saulger]

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

[saulger in reply to Dancing135]

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.

[Mumursa]

Excellent news, I’m really pleased for you!

I was very impressed by Dr Ohtsuka in the video you circulated, shame we can’t clone him!

Here’s to your continued good health!

[saulger in reply to Mumursa]

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 !

[mjames1]

Happy 12 month anniversary. Glad you're doing so well! Don't listen to the negative voice here. Some are just stuck in the past, or simply jealous.

Jim

[saulger in reply to mjames1]

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.

We hear a lot about what hasn't worked.

See you in 12 months. Saul

[ozziebob]

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.

Mr Grumpy 🤔

[saulger in reply to ozziebob]

I know. Very disappointing. Surely, what had worked is rarer than what hasn't. Thank you for all the 'likes' to the positive comments. Stay well. Saul

[mjames1 in reply to ozziebob]

A shame. The number of members here should understand that this is a "support" forum, not an attack forum.

Jim

[ozziebob in reply to mjames1]

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).

Bob

[saulger in reply to ozziebob]

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.

Be well and take care, Bob. Saul

[MiniMeGreen in reply to ozziebob]

This and other kind of deletions as well as some mocking comments truly puts me off posting.

[saulger in reply to MiniMeGreen]

You are right. It's sour grapes, ignorance, and parochialism to shut down a healthy discussion. I will not be back for a long while.

[dedeottie]

This is so good to hear. Go you! X

[saulger in reply to dedeottie]

Many thanks and reciprocal good wishes.

[JOY2THEWORLD49]

Hi Saulger

Been to JAPAN and back.

Such a well-mannered culture.

Loved watching the TOKYO TOWER from my bed.

Breakfasts different and the Kyoto Inn a change everyday. Hotel staff great except little English but we eventually got directions to where I wanted to go.

Didn't see the hospital but I visited the Tokyo Baha'i Centre.

Enjoyed the subway for transportation. But walking... stairs.... and needed help nuying tickets.

Sitting on East windowseat to see Mt Fuju was not a win .. too much cloud.

Visited the Gold Koyota Temple. Castles and Parks. The Archways intrigued me. A group was told not to walk under the archway whilst eating their icecreams.

Young students assisted me in English with my questions. I used the middle carriage with seats for seniors. The bullet train gave us a seat though.

In Osaka was the castle 300 metres uphill and parklike grounds.

I bought a good SONY camera at the Tokyo Airport but they robbed from me through an unrealistic exchange rate.

No exchange in currency from NZ to Yen in any hotel. A nuisance so I had to stretch my Yen.

I had trouble walking far.

Returning my BP falls to 108/62 so I have 1/2 Bisoprolol = 1.25mg. This astonishingly was the trouble. I will have an ECG end month.

We haven't heard from you forever. How is Greece and you!

cherio jOY

[saulger in reply to JOY2THEWORLD49]

Hi Joy. Forgive me for the belated reply. My birthday and Evelyn's at the same time.Glad all went well in Japan. It was a wild place to figure out (customs-wise) in 1972 but nowadays they are more used to tourists in remote places.

Shame about Mount Fuji and you'll maybe try again?

In Tokyo I stayed at a travelling- salesmen hotel (not advertised as such) very centrally in Nihonbashi by the Sumida river and it was the perfect place for my recovery, walking by the water observing crowds of smokers gathering outside their offices. People were smiling and kind to me, even when I got myself lost in the labyrinthine small alleys.

The Japanese are excellent business people but fair, I found.

When I had to stay an extra day at the hospital, the hotel did not charge me even though my reservation was for the day before.

Great that you enjoyed your Tokyo view from the hotel.

I am very envious that you did so much travelling in Japan.

I visited all the places that you mentioned in 1972, but not in 2022, when I chose to stick by the hospital.

Blood pressure 108/62 is ideal. Mine is lower at 90 or below, normally.

Bisoprolol is prescribed for high BP as well as for its mildly anti-arrhythmic properties.

Take care Joy. Good to have you back in one piece.

In ten days or so I will be two years AFib free and will post on the forum.

Saul

[JOY2THEWORLD49 in reply to saulger]

Hi

Yes, enjoyed JAPAN.

I got wise to getting rid of small change quickly! 1 Yens a nuisance.

I was reminded that winter best to see Mt Fuju thus clear cloudless skies he said. I was intrigued by Mt Fuju's 5 Lakes. But I'm not a skier and personally do not like skiing.

An overdose was apparent when at Table Tennis which I started 2.1/2 months ago when I needed 5 secs to get my vision to selle after picking up a ping pong ball. Also on day two of my return was my eye check and I felt that my vision was not its v good self. But luckily I passed every test. And little change if I wanted perfect long seeing vision.

And 150 strength from the chemist.

After taking 1.25mg its a heck of aot improved. At Table Tennis I did not need the 5 sec rest.

I recall that starting on Metoprolol I was a zombie. I couldn't exert myself. Walking up my driveway was too much. I told the Endocrinologist when offered it after the stroke "No. It will make me breathless'. And it did. She ignored me.

BBs did reduce my heart rate much so I take 120 Diltiazem CD in AM for control of my Heart Rate.

My Heart Specialist when cornered said that I should drop Bisoprolol if my BP or H.rate got too low.

I'll cross my fingers to aid in your quest to continue AF free.

cherio JOY