I've had persistent AFib for decades. Cardiologist and EP suggested ablation, watchman, every pill and treatment out there but I never felt they were the right thing to do, other than taking many meds, Altace, Toprol XL, Amiodarone, etc. Most recently I had to go onto Xarelto, 'tho I resisted it for all the years because of side effects when I took it. I've developed a thrombus in my left atrial appendage which significantly upped my stroke risk, so I am now on Xarelto with all its side effects. In less than two months, I join a group of over 3,000 Afib patients who were lucky enough to qualify for a procedure developed and executed by Dr. RANDALL WOLF who operates at Houston Methodist Hospital in Texas, during which he treats the patient with a closed chest procedure through several small incisions using instruments and robotics to carefully address the problem which actually is on the outside of the heart where the nerves causing Afib reside, rather than accessing the inside of the heart via a groin entry up to the heart, then burning through the heart to reach the nerves on the outside. (My understanding of the anatomical cause and treatment-I'm definitely NOT a doctor. Also, tiny particles can break off during the normal ablation procedure and cause a stroke.) Dr. Wolf's procedure is a "one and done" treatment during which he removes the appendage (LAA) in which clots form, reducing stroke by 97% with no need for further blood thinners. Apparently, most patients are weaned off the many other drugs I take which currently cause lethargy, then insomnia, etc. Please examine the Randal Wolf option if you are looking at the alternatives currently offered by others. He has a wonderful page where we folks looking to join the "Wolf Den" can go to get questions answered and find camaraderie with others who are "in the same boat". You may just find a lifeline. Also, he has many presentations and discussions posted on YouTube. Be ready to go down the rabbit hole...once you start listening to his explanations, his lectures, and see his guests who have gone through the procedure, you WILL NOT be able to stop watching. I takes almost a year from first introduction to surgery date. As I said, I have less than 2 months until it is my turn. I'm not sure whether this will be posted to this website due to the fact that it challenges the majority of thinking amongst cardiologists and EPs; however, I just wish some of them would flock to learn the procedures then make them available all over the U.S. rather than refusing to even hear about the procedure as my cardiologist of 15 years did. Needless to say, I've changed cardiologists and the new EP immediately checked out the websites to see what I was referring to and has agreed to do any follow up visits if they are necessary. He is really interested. Good Luck in your pursuit of NSR and throwing away prescriptions! Please keep me in mind mid-January. I'll try to post my experience with the Wolf MiniMaze!
Looking for my Miracle: I've had... - Atrial Fibrillati...
Looking for my Miracle
There are a few people on here who have had this treatment. We advised a friend to go for this when we first read about it more than 8 years ago (before I had AF) ago but unfortunately it didn't do her any good - we don't know why nothing seemed to work for her - she seemed to have many genetic problems causing all her heart problems - one of which was AF. I hope this works for you please keep in touch and let us know how you get on.
All the best.
Thank you for your good wishes! I hope I'll be singing praises that others have with a successful outcome. I'll let you know either way. It may take awhile for a final outcome.
Hello and welcome to the forum. There is quite a vibrant following for the Wolf MiniMaze procedure by many members from across the pond but I expect you already know that.
Here in the UK, this specific treatment is currently unavailable but there are other variants of the MiniMaze procedure which are, but they are not easy to come by on the NHS. There are around half a dozen or so members with long standing persistent AF who have had MiniMaze treatment, either privately or via the NHS and they all are very pleased with their progress. The hope is that availability will improve so that others in similar situations can benefit as well.
No doubt there will be a very enthusiastic response to your post over the weekend, particularly from the US which will encourage you but virtually all the Dr Randall Wolf videos advertising his procedure have been posted many times over.
Good luck with your decision and hope all goes well for you in January and we look forward to hearing your story …..
Thank you. I believe that only Dr. Wolf and his counterpart Dr. Ohtsuka in Japan do this procedure which differs some from the other Mini-Maze procedures, some of which require deflating a lung, going onto a machine during surgery, and sometimes cracking the chest open for access. I like the minimally invasive prospect of Dr. Wolf. So, we'll see. I hope I have a great story to tell in January, and most of all, I hope I can get the Heart specialists in my area interested in learning the procedure with my result so they can help others without having to travel across the country and wait a year in order to get relief from our AFib. Thanks again.
Hi there, only the minimally invasive cox maze iv requires a heart lung machine, most mini maze only partially deflate the lung and move it to the side like Dr Wolf. There may be other versions in the US of course. This is simply what I found when researching different surgeons.
Would you please post a link to the 'wonderful page'?
Thank you!
I have posted that link already several times!
Have you already had the Wolf MiniMaze? I'll look for your comments regarding your before/after status.
Not yet but soon.
Which page are you referring to? The Facebook page or his YouTube videos.
Facebook. Search wolf mini maze live AFib free
You tube. Debakey cv live/education, Dr Randall Wolf.
He has a wonderful page where we folks looking to join the "Wolf Den" can go to get questions answered and find camaraderie with others who are "in the same boat".
I'm referring to the page the OP talks about in their post.
That is the first one I posted. There is no link for it. You have to go to Facebook and search wolfminimaze live AFib free.
I applaud 👏 you for the best decision ever and for changing the cardiologist as needed. You will change your life for the better. Good luck.
I'm going for the same thing to Japan soon as USA prices are pretty inhumane for a selfpayer.
Congratulations on your upcoming WMM. 👏 As you already know you are in the very best of hands and will Be amazed at the whole experience. I am 17 mos out from my procedure and have been AFib free since surgery and on no meds. I had episodes every 5 days prior.
I'm slated for Feb 23 after tw o failed ablations I'm looking forward. Congrats
I wish you the best on your Feb 23 procedure.
Welcome JazzSinger. Dr Wolf will do TEE ultrasound to make sure that there is no longer a clot in the LAA (appendage), before doing the WMM. Wishing you luck and please report your progress here. Success with long standing persistent Afib is something of interest for many members.
Good Information. Thank you.
congratulations on making your decision and we’ll be looking forward to hearing from you after your procedure.
I agree on both Dr Wolf’s videos which are excellent and drove me to go and research more, and the wolf pack - it’s a highly supportive group where I learnt loads too about what recovery can be like and that it’s not straightforward for all.
I had my mini maze performed here in the UK.
I really do hope on the back of the most recent European study CEASE-AF into hybrids that the UK NICE guidelines will be updated. The current NICE review was back in 2010 when it concluded that the procedure did not have enough evidence, now there is so much more.
The CEASE-AF study compared Hybrid Ablation (HA), which is part surgical and followed by a standard catheter ablation for persistent (about 80% of trial patients) and long-standing persistent AFib (20% remainnder) patients.
Initial success was 71.6% AF free for 12 months (in the absence of new AADs or increased doses of previously failed AAD) after a HA, and 39.2% successful after a CA. Longstanding persistent success was 66.7% with HA compared to 25.0% with CA.
Both had similar major complications: 7.8% for HA and 5.8% for CA.
thelancet.com/journals/ecli...
Thanks for sharing the study Saul, the findings were cross centre and a significant number of patients so hopefully it will be adopted in the UK. Personally I think the only way surgical ablation will become more accessible is to partner with the EPs who own this space right now.
Do you know if it was the same as the Wolf procedure or another version of it? Was your procedure successful?
Part same, part different. Same - both ablate pulmonary viens and clip left appendage. Different - dr wolf does ganglionic plexi, my surgeon does most of the cox maze iv (he doesn’t do the ismas lines). For me the UK surgeon method was a better choice as I was long term persistent. Had I been an earlier stage of my afib journey and paroxysmal then cox maze iv could be argued to be overkill.
Yes so far successful without catheter touch up and I am 20 months post surgery
PS both dr wolf and my surgeon mr Hunter been doing these procedures since 2003. So both very experienced and neither has had a fatality. Sadly that can’t be said for all surgeons doing this on a beating heart.
I wish you continued good health. Are you off meds or weaning off?
Off all meds after 6 weeks.
All well and good but here in the UK not available on NHS except as a mini maze which is also difficult to obtain.Prohibitive cost to go private for most people makes the decision, not the merits of the procedure.
I'm not sure I like the tone of this very enthusiastic post,it gives the impression that anyone not 'opting' for the Wolf maze is wasting their time trying to address AF andxA Flutter.
In fact flutter ablation is over 95% successful, as mine has been. AF is trickier to address but is well worth being abated for. Many people have great results ( some needing top ups if bits have been missed)
Some AF people do really well on flecanide alone.
I totally understand where you are are coming from but we have to acknowledge that this is an International forum but it does have rules which discourage it from being used to advertise the services provided by privately owned sources. There is nothing wrong with sharing good news about good experiences but I’ve yet to see a joyous photo of a NHS AF patient in the close company of his EP! Perhaps that’s something to do with British reserve 😂.
There is one thing though which I just cannot get my head round. We are told that treatment can cost $250,000 in the States, but if you are prepared to take the incredible risks associated with jumping on a plane alone and having it done in Japan by one of Dr Wolf’s protégés, it can be done for $18,000 including travel, accommodation for 5 weeks.
A catheter ablation carried out privately in the UK costs around $25,000 so how does that work 🤷♂️.
One other minor observation, this post was beautifully written, quite lengthy and detailed yet unlike this reply, not an edit to be seen….
So I think BobD is right, if this procedure isn’t on your radar, best ignored….
Hello Wilsond. I know you to be a good and encouraging member and I believe that you were encouraging in my journey.
The discouraging news is that a CA was only 25% successful for long-persitent AFib patients (CEASE-AF trial). The success rate for persistent patients was better at 39.2%.
A surgical ablation, combined with a follow-up CA ablation was much more successful with 71.6% and 66.7% success, respectively. If you are long-persistent I am sure that 66.7% chance of success will sound better than just 25%.
The folks who are writing about their mini-maze (such as myself) have no stake in the game.
I was told that my AFib was incurable and life-threatening. Early on I had an hour-long virtual consultation with Dr Sanjay Gupta and his advice was to take anti-coagulants for the rest of my life because I was 60% protected from a clot leading to a stroke, and to also take Flecainide (rhythm) and Bisoprolol(rate), which were mildly effective.
Could I live with AFib episodes every other day (some lasting over 12 hours)?
Would I give up physical activity, and have to tolerate the medications every day, and the fainting spells?
Did that sound like good advice to me? No it didn't.
My AFib ruined my life and I felt that my best years were over. A year ago I took a plane to Tokyo and came back to Europe a month later with a mended heart.
No more no less, and not as dramatic as Flapjack would have it sound, and a BARGAIN at 18,000 EUR all in, to boot,
Saul
I think you underestimate the extent of your courage to do what you did a year ago. Of course, everyone would want things to go well and have a positive outlook but I’m not sure many of a similar age (I’m the same age as you) could ignore the consequences of what might happen if things had not gone according to plan. You deserve to reap the benefits and long may it continue…….
I would not go to Turkey (now Turkiye) for this. I could end up with my heart on my sleeve !!!
All the best and thank you for your kind wishes. Much appreciated. Saul
Some do great with an ablation and some do not and it is those of us who didn’t that seek another option as I did. Ablations for atrial flutter are very successful in upper 90s as it runs in a straight line along your hear so much easier to fix. I happy you are doing well.
Not quite, flutter runs on a circuitous route ,at a very fast regular rate. The straight line I think you are thinking of us the scar line the surgeon outs across it like breaking an electrical circuit. I do understand your point about routes if you can't have a standard ablation.
I do apologise. I was feeling sad and mad today. Nhs is in such a state and we are nit really geared up for private care yet,in the sense that we pay national insurance as part of wages, sone firms offer private care as part of the package ,but many do not. As for retirees,we have no chance unless we have substantial savings ( or sell a kidney lol)
My dear daughter in law is facing a 46 wait to see a neurological specialist, with tragic possibilities if her spinal condition worsens suddenly ( a real possibility)
We paid for her to see someone privately as initial consultation, he confirmed this but we cannot afford the cost of the highly complicated surgery.
The Wolf maze sounds wonderful.
I wish you the best. X
I understand what you are saying about the circuitous pattern. Flutter is generally an easy fix however. I wish you the best as well.
Sorry...no intention to put down other procedures. It is just my personal choice after my brother had 3 failed ablations and my sister has had several cardioversions. I've been following the Wolf information for 2 years and after 20+ years of persistent Afib want to take the big leap. I appreciate all of the enthusiasm as someone who normally never chooses willingly to have any surgical procedure performed. I appreciate all the positive support.
it’s not a donkey ride on Blackpool beach mate 😂😂. I think you’ll find they might be a bit too busy for tacky snap shots….
My point exactly 👍
I had the WMM in May of '23. Recovery was not a walk in the park. Coming out of the procedure, I was on an Amiodarone drip, and I spent a couple months in A-flutter. I was on 200 mg/day of Amiodarone along with a calcium-channel blocker and the attendant side effects. That brought my pulse down from 120 bpm. After a (second) cardioversion in mid-July, I converted to NSR and have been there since, with a pulse in the high 70's. I am currently weaning off the Amiodarone and scheduled to be off of it entirely by the end of the year. That has been a goal urged by my local cardiologist, well aware of the possible long term effects of Amiodarone. It was also the target set in virtual consultation with Dr. Wolf, who monitors my heart via the LINQ device embedded during the procedure.
Dr. Wolf is accomplished, personable, and precise, and Houston Methodist is a wonderful hospital. I don't believe the astronomical sum suggested by Flapjack is even in the ballpark. Though I qualify for Medicare and my procedure was mostly covered by that and a private secondary insurance, the statements I have seen are less than 10% that sum. Others on this forum who have been billed privately may speak more precisely to the issue.
I will say that it was Dr. Wolf's rationale that most compelled me: heading off the rogue signals outside the heart before they can even generate in the LA by identifying the ganglion plexi carrying the charges and ablating those. I believe the similar procedures in the UK take the same approach.
Good luck to all no matter how you are grappling with this affliction. We are all different and I have found the accounts here very, very helpful as I have discerned my own path through AF.
Not suggested by me but by others who claimed to know - I haven’t a clue what it might cost.
So then why repeat an unverified sum?
I can confirm that the cost is something like $200,000 now for private payers. It was over $150,000 two years ago.
Why not🤷♂️…….they were the only figures offered at the time and those interested in the procedure needed to know.
I was booked for private pay before switching to UK and the sum 2 years ago was around $150k, it would be higher if and extended hospital stay was required.
My name is Sandi and I am the admin of the WMM group in the US. I am also a patient of Dr Wolfs who had the WMM over 5 years ago after three failed catheter ablations. I remain afib free and take no meds other than vitamin D. Dr Wolf will do a TEE prior to your procedure to evaluate the clot in your LAA. Your description of the procedure is detailed and accurate. Years of persistent afib lowers your success rate a bit of obtaining NSR as I’m sure Dr Wolf explained to you but he restored NSR just last year in a dentist who had been persistent 14 years. The LAA will be clamped and you will never have to take an anti coagulant again and basically eliminate your stroke risk. For me getting off the meds and anti coagulant was huge as the meds were slowly killing me. Some have great results with meds and ablations but I wasn’t that lucky. As many as 20% can have afib originate from the LAA and clamping it eliminates electrical activity there. That may have been my issue. This option is cost prohibitive for those in the UK and Europe. Dr Ohtsuka in Tokyo although an out of pocket expense is another very affordable option. Many Canadians have gone to Dr Ohtsuka in just this last year. I’m hoping the UK will ease their restrictions on those seeking the surgical ablation option as more Drs are performing them now. I look forward to following your progress after your January procedure.
Thank you Sandi for the TEE information. I just googled it and see that it's no fun either. I have only 7 weeks until I head for Texas. I hope that I have a successful procedure and just as important, can get off the meds that have caused such discomfort for decades now. You have been a guiding light on the Facebook page and have clarified so many questions about the procedure...what to expect, how it will be done and even where to stay in Houston. Thank you for your personal and unselfish investment of your time to make the path easier for the rest of us.
Here here 2018NSR has been a guiding light for many of us. A true 😇
I do not quite understand why you did not wait for some more months before you invite other people to start doing a procedure which you do not even know if it will be successful in your case? I sincerely hope it will be and will be most interested in the outcome as I too do not suffer the NOACs well and had to quit taking any. Still, I wohl never tell people to follow in my steps, while I am going into the unknown......You could have waited till February at least?
It will be very interesting to see if TheJazzSinger132 will take the trouble to acknowledge or comment on any of the replies, especially yours which makes a very valid and reasonable point.
Nothing at all. So what are those posts? Doctors advertisments or what??
Well because you are the Jazz Singer. you deserve a chance.
I for one cannot have a cardioversion, ablation or an anti-rhymnic dose. Reason ECHO shows an abnormal heart structure.
That is why an ECHO and MRI are so important.
keep safe.
Cheers JOY
Thank you for this information. Afib has been sprouting new and improved approaches every year.Great stuff!
Not what you're looking for?
You may also like...
Post Wolf Minimaze - 11 days - feeling great
The Magnesium Miracle
Cardiac Ablation Looks Successful!
No Afib Episodes Then Why Take Blood Thinners
Looking for more information on sleep & AF?
Does heat ablation go anywhere near the phrenic nerve?
Proper Drug for My Wife and Efficacy of an Ablation
Continuation of stroke risk after ablation.
P-Afib from cancer treatment causes different part of heart to misfire.
