Hello, I’m new here. I am an RN and also an afib patient but have been afib free and take no meds since I had a mini maze in 2018. I like to stay current with all information and new treatments related to atrial fibrillation. I also have a son in law with afib. Afib seems to be becoming an epidemic and I’m hoping for more Drs to be more proactive in learning some of the new techniques that are more effective at allowing people to eliminate their afib and the debilitating meds that go along with it.
My afib journey: Hello, I’m new here... - Atrial Fibrillati...
My afib journey
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2018NSR
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I was diagnosed 1 1/2 yrs ago for paroxysmal AFIB. And I am also hoping they will do more research to come up with new effective treatments. I did read about some procedure in I think it was North Carolina. But it wasn't clear to me what exactly they did differently during the ablation. I was shocked to find out a work colleague of mine who is 37 yrs was diagnosed with AFIB when she was 21 and her college boyfriend also had AFIB. It does seem that many have it. And unlike me, who I feel the exact second my heart starts to race some have it and don't feel it. I am not sure if it is blessing or curse to feel it or not as I also get ectopics at times.
in reply to NYCgal22
Hi there NYC and also to 2018NSR,
I was diagnosed with paroxysmal AF in Jan 2010, aged 65. I have a party bag of drugs aimed at Cholesterol, Hypertension and stroke prevention ( Warfarin - Coumadin to you guys in the States). I have elected to stay with the medication but support it with changes to diet.
Sometimes I think we spend too much time focusing on direct cause and effect while ignoring lifestyle and genetics and the way genetics behaves, i.e. does it affect every successive generation or every other generation.
In my case my paternal grandfather died from a succession of strokes over time. Sadly, nobody in my family alive today knows what his problems were. However as this was 1964 it may have been a brand of AF which was incorrectly treated. I have paroxysmal AF, my paternal 2nd cousin also has AF (interestingly his paternal grandfather and mine were brothers) .... and wait for it ..... my daughter in her late 20's/early 30's was diagnosed with AF when expecting her two daughters. When she stopped breeding the AF stopped. She is not on any medication. She is a gym freak specialising in Thai Kick Boxing and looks like a Stick Insect.
This is what I mean about genetics.
Generally my AF is controlled. Major events every few years which are totally debilitating lasting up to 15 hours - minor events several times a year which last for a few hours and disappear for months only to return and kick my ass once again.
😂
John
2018NSR in reply to
Hello, I did the party bag of drugs. None of which my body tolerated. Had three ablations as well. Finally after being told I would need a pin AN node ablation and a pacemaker and refused I had a mini maze. Over three years. No afib, no drugs and no pacemaker.
Hi, I have recently retired from working in a health setting in mental health, I was interested to hear about your mini maze procedure instead of pace and ablate. I asked my consultant about this option but it’s doesn't appear to be offered in the UK. He’s very keen for me to have a pacemaker fitted and I’m reluctant. At present his plan is wait until I go back into AF and AFL then change my meds to keep the heart at a reasonable rate of about 100 and list me for an emergency ablation, this will be the 4th one. To say I’m not optimistic is a bit of an understatement. I wish I could find out more information on mini maze in the uk and a hospital that would at least consider it.
There is a hospital in London that does a version of the mini maze but it is called a convergent procedure. Done a bit differently than my true mini maze but I’m excited that at least more and more Drs are getting on board with more than drugs and ablations.
Sandi Fezatt Schrameyer paulmodi.co.uk/surgical-pro...
Thank you for the link to Paul Modi, I have contacted his medical secretary. They have asked me to get a referral from my consultant. Fingers crossed he will agree as was quite dismissive when I spoke to him about mini maze procedures previously. At least I feel more in control of my destiny and well-being which can only be good. Thanks again, I’ll let you know the outcome.
Here is a link to one of the min-maze procedures. Although it is US-based it might provide you with a bit more insight into what it entails. wolfminimaze.com/the-wolf-m...
Wishing you well,
Marty
4chickens, hi, I do hope you have successfully secured your mini maze but if not I had one carried out at Harley Street Clinic on Friday. I have been documenting my progress on here. Feel free to PM me if you would like more info. 👍
Thank you, yes I’ve been following your progress and found it very informative. Unfortunately I’m no further forward as my consultant refused to send a referral as he felt that as my Af changes to afl it wouldn’t benefit me. He still wants me to wait until my heart goes in af then afl and do another ablation so he can see exactly we here the signals are coming from. He’s also keen on a pace and ablate but I’m not. Hope your recovery continues to be as smooth as it can be and you remain af free.
Goodness sorry to read that you have not been supported so far with your wishes rather than your consultants! My EP told me not to have surgery but everything I read said for me it had a better chance, I am fortunate to have private healthcare so went ahead and had it done anyway. I really wish the EPs here were better educated in surgery, makes me sad
As they say 'this'! Totally what's needed - patient information when they get their diagnosis (awful in the UK) and wider understanding of lifestyle and subclinical conditions that lead to it. We need the mini maze here.
I wish more was looked into the family link to this condition, when I brought it up with my cardiologist he basically said it wasn’t an inherited condition but it seems strange to me that everyone on my maternal side has died of heart attack/stroke. My Nan had AFib in her 50’s and died of a stroke at 62, my mum was diagnosed with AFib in her early 50’s and now has cardiomyopathy and I’ve been diagnosed with AFib at 49 with no underlying health conditions and previously very fit and healthy. There’s definitely a link there that I can see!
I have followed all your videos with Dr Wolf and twas inspired by your personal journey. I thoroughly researched Mini Maize procedure here in UK and discovered a surgeon and hospital in England that provide it. I made an appointment with EP to discuss accessing procedure but was told that it would not be available . He said that there was no possibility of me ever being referred or offered a mini maze at the hospital in England that provide the treatment. I live in Scotland. I had such hopes after hearing about your journey as I cannot tolerate anti coagulants and am in a permanent weak drugged state. I have even priced flight costs to Houston! It was hard to accept mini maze treatment unavailability here in UK after my hopes were raised researching so much about Dr Wolf. I am becoming upset again after reading your post to raise awareness here as I now feel so hopeless with complete reliance on meds route here which I cannot tolerate.
I do believe more Drs are starting to learn this procedure. The issue is that the Mini maze has to be performed by a cardiac surgeon, EPs cannot do this. There are thousands of EPs to one cardiac surgeon trained to do this. If you’ve followed my story you know that I had three failed ablations. The meds were worse for me than afib. I refused the AV node ablation and pacemaker I was offered and had the mini maze. I have spoken to many all over the world and yes, they do offer a procedure in London but it is a totally different procedure than the one I had. It is considered a convergent procedure done in two steps involving the cardiac surgeon first ablating the posterior atrium where the EP cannot reach and then 4-6 weeks later the EP will do a traditional ablation. The LAA may or may not be addressed. Getting off a blood thinner was huge for me and clamping the LAA reduces stroke risk by 97%. The mini maze I had carries a success rate in mid nineties. He pioneered this procedure 17 years ago and his patients 17 years out remain afib free and no meds. A couple of small incisions through the rib cage on both sides and a few scope punctures. All done on the outside of the heart. A solid ring of scar tissue is formed with an instrument around the pulmonary veins. There is no break in the scar tissue for afib to sneak through. I went back to 12 hour nursing shifts at 5 weeks. I wish we could have a Dr Wolf in every state, country and hospital.
Just an FYI for those in Europe. Dr Wolf trained an excellent surgeon in Tokyo. Dr Wolf says if he ever gets afib he would have him do his mini maze. I’d be glad to share his name if getting to Tokyo would be an option for anyone.
Apppying all the possible life-style factors can bring a lot of improvement, including, for most people, taking magnesium in some form.
Glad it worked out for you! 🙂 Mini maze is also offer here in Canada, but before everyone starts booking flights, be aware, that just because you have heard glowing affirmations of the results, every Dr. Will tell you, every case and every patient is different.
Case in point, my paroxysmal AFIB is controlled perfectly with drugs. with zero effects. And, being a bit of a "fitness but" this is important. No side effects whatsoever.
So before a person gets worked up about how crappy the medical offerings are in their country, and are envious after reading such positive reports from across the pond, please consult your medical team.
Remember, to fly to the USA for this procedure without being a citizen with paid up health insurance, you will pay dearly.
Yes it's free here in Canada, one also needs to be a citizen, so please do your due diligence and research before whipping out your wallet.
Also, be aware that a Mini maze is just a less invasive ablation procedure, but the end result is the same, so keep that in mind.
Hello, yes, there is a procedure offered In Canada I believe in Toronto. I have spoken with many of my Canadian friends. It carries the mini maze name but it is a convergent procedure done a bit differently. You can read my message above as well. The mini maze has a much higher success rate because of the way it is performed vs a traditional ablation. Afib is progressive and meds lose their efficacy over time so it’s good to have a plan for the future. Some do great with an ablation and some don’t depending on where their afib originates. Many can have afib originate in the LAA and clamping it during the mini maze eliminates the electrical impulse there. The LAA is not addressed in an ablation and a watchman device does not eliminate the electrical impulse there either. The mini maze is just another option in treating afib. The farapulse ablation in trials now is having great results and may be available next year for everyone. I wish everyone NSR no matter how they obtain that.
Regards your advice to consult your medical team before looking for help "across the pond, there is no opportunity for this in Scotland. I have never had the opportunity to even speak to a cardiologist, despite spending one week in hospital where I was diagnosed in A&E with AF last December. I was discharged to GP care which is telephone only. I have allergies to all antibiotics and suffered severe side effects to Apixaban which has ruined my life. There is no help or AF team except GP who just advises to keep taking the meds. Main function of GP seems to be keeping patients away from hospitals, who have now called in the army to help ambulance service and to support hospital staff who are exhausted. Some of us are desperate for help which is unavailable here.
cat133 i am also in Scotland, in Edinburgh, where are you? At the very least your GP should be referring you to a cardiologist (EP), all the main hospitals in Scotland have EPs. That does not mean that they will recognise, or their colleagues the cardiac surgeons offer, a stand along mini maze though, NHS guidelines here are to only offer a maze when you are having open heart surgery for something else.
When I first raised Dr Wolf with my EP he was not supportive and warned of single hospital centres getting such great results and questioned why this was not adopted around the world. More recently Edinburgh have teamed up with a heart centre in the Netherlands who are very experienced in stand alone mini maze and are considering training up the surgeons here. That would be amazing news for long term persistent patients. Sadly will take too long for me.
I've tried Steven Carr's successful protocol for himself carrafibdietinfo.com/ for a couple weeks and there is early success. My ectopics are less and my heart much quieter. It is far too soon to reach any conclusions but I am encouraged.
You use the word epidemic and if Mr. Carr is correct, it could largely be related to the interrelationship between Vit D and calcium. These days, human beings spend more time indoors at a computer among other things and generally less time in the sun. So the body does not produce enough sun-induced Vit D and at the same time, a myriad of foodstuffs are fortified with calcium, and combined with all the various dairy products, our calcium levels are way too high.
According to him, this can trigger a-fib in certain people, not to mention creating plaque in the arteries. And this is happening apparently more and more as too much calcium is dumped into the blood, rather than getting absorbed and going to the bones, among other places, due to the action of Vit D
Welcome! I have seen recent information about the huge increase in AFIB diagnosis and it's relationship to antidepressants. Current stats show that at least 1 in 10 Americans is on, or has recently been on, an antidepressant drug. There are several classifications of these drugs (SSRIs, MAOIs, etc.) and each can significantly affect heart rhythm. This is even listed by the manufacturers as a potential, and common, side effect. Now Information is emerging that AFIB in particular can be a side effect. It's something to consider when turning to drugs for mental health issues.
I wonder if too much salt can bring on AF? I had a lot the other night and had a bad night with AF.
Another "mini-maze "procedure exists. It is called the Cox mini-maze procedure. Here is a journal article that discusses it. "Intraoperative modified Cox mini-maze procedure for long-standing persistent atrial fibrillation." I believe a physician named Ralph Damiano from St. Louis pioneered this method. pubmed.ncbi.nlm.nih.gov/183...
Hello, the Cox mini maze procedure you mention here is an open chest procedure done but Dr Damiano. He will perform the mini maze when the chest is opened to repair another heart issue such as a valve replacement. This requires a heart lung machine and collapsing the lungs. They will usually not do an open chest procedure to correct afib alone. It’s confusing I know as it carries the mini maze name.
I attended an AFIB conference earlier this year at which Dr. Damiano was a speaker. He described the procedure in detail. The procedure he described did not involve open heart surgery. I believe was referring to a Hybrid Cox Maze procedure which is less invasive. Below is a excerpt from a Stanford publication. The entire document can be found using the below link.
stanfordhealthcare.org/cont...
At Stanford, we often perform the Cox Maze procedure with a minimally invasive, 5-centimeter anterior thoractomy incision. Hybrid ablation offers an even less invasive alternative for eligible patients. Hybrid ablation combines catheter ablation with a minimally
invasive surgical ablation for the best care short of Cox Maze surgery. We perform surgical ablation on the outside of the heart through a video-assisted thoracoscopic (VATS) technique. There’s no need to spread the patient’s ribs with this technique, reducing pain and speeding healing. We combine this with a catheter ablation, which targets the inside of the heart. Early results suggest this combination is nearly as effective as the open heart Cox Maze procedure.
Anytime you see hybrid means there is a catheter ablation involved. With this procedure they go in from the front under the rib cage and ablates a large amount of the posterior atrium. This is done by the cardiac surgeon. Then an EP will perform a catheter ablation on the front of the heart. Some cardiac surgeons will clamp the LAA during this procedure and some do not. Sometimes this catheter ablation is done 4-6 weeks after the initial procedure however some are doing it all at once. The mini maze procedure is all done by a cardiac surgeon. No EP involved. It always clamps the LAA and is done through the sides between the ribs. So two totally different procedures.
You are correct tho that this is also considered a minimally invasive, not open chest procedure. The original Cox maze procedure was open chest and I thought that was what you were referring too. Sorry for the confusion. I attended the virtual conference as well.
I appreciate your insights... 
BTW, since you attended the conference you might remember a Dr. Calkins, from Johns Hopkins Hospital, being part of a panel discussion regarding AFIB and ablation procedures. After researching his background, learning about his expertise (he is the Director of the Clinical Electrophysiology Laboratory, the Arrhythmia Service, and the Arrhythmia Right Ventricular Dysplasia Program at Hopkins) I reached out to him. And given that my cardiologist in FL wanted me to see an EP anyway, I opted for Dr. Calkins.
Within two weeks of initial contact with Dr. Calkins, he reviewed my health records, called me and discussed treatment options. Since I've had a plethora of medical tests related to my Afib in Florida hospitals, he had sufficient information from which to draw conclusions. In his opinion I am an excellent candidate for a catheter ablation. Being now a paroxysmal patient, and not wanting to risk waiting and becoming a persistent or worse, I agreed and am scheduled for the procedure in the second week of January.
Didn't mean to be so verbose, but I thought you might find it interesting especially in view of your attendance at the conference.
I wish you many years of success with your ablation. I have attended the conference every year since 2016 had a mini maze with Dr Wolf in 2018. The conference is a wealth of knowledge and yes you are right being aggressive early with afib still being paroxysmal is much easier to correct. Best wishes.
Hello. I live in the U.K. and I had a hybrid convergent procedure carried out about 8 weeks ago, as described in the Stanford link above. The surgeon who operated on me regularly carries out VATS procedures for arrhythmias, which is listed in the information booklet the hospital gave me as MAZE. Entry to the chest is via the r/h side of the rib cage rather than the front.
I spent 5 days in the Progressive Care and Cardiac Intensive Care Units and it was an ordeal compared to my previous ablations, so I’m really hoping that the additional work proves successful.
I found out that Barts also carries out surgery and hybrid procedures, so I guess other centres do as well.
Thanks for raising this. It’s the only way to find out what’s going on!
2018NSR in reply to
Was your convergent procedure done in one procedure or do they follow up with a catheter ablation later. Interesting that they entered on the side. Most convergent go in under the ribs from the front. Did your procedure involve an Ep or just cardiac surgeon? Glad this is behind you. Healing takes awhile. 5 days in the hospital is a lot, did you have issues? I spent two after my mini maze.m
in reply to 2018NSR
It was one procedure in which an EP and a surgeon acted alternately. It took 6.5 hours. I would describe it as a thorough attempt at tackling all the sources of my af.
I did get an infection and pleural effusion, but I don’t think they caused any particular holdup. I was expecting to be in for 5 days.
Although I felt dreadful, my heart felt better from day 2. It feels like it’s in a much better condition, and the body wounds cleared up a couple of weeks ago so I’m feeling positive.
I’m so happy to hear this. Although I had the mini maze I do believe healing goes out for a full year. Congratulations. I wish you NSR forever.
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