mini-maze surgery

[SusieQ2023]

I have struggled with a fib since 2005. I have had four ablations, 18 electrocardioversions, and taken every possible drug to no avail. I have an appointment on Tuesday for a consult at Barnes with Dr. Ralph Damiano to see if I can have the mini-maze procedure. I am wondering if anyone who has had it can give me an idea of what to expect. Thanks!

[etheral]

Have you tried Tikosyn?

[MummyLuv]

hello and I hope a positive step for you. Is he at Barnes Jewish hospital? Does the minimally invasive Cox Maze? (a fuller procedure than some mini maze and I believe on the heart/lung machine).

At least one of his patients (in fact I think a few) have posted their journey on this Facebook group.

Good luck with your decision!!

Screenshot

[MummyLuv in reply to MummyLuv]

it’s worth me asking if you are persistent or paroxysmal afib?

If persistent you may benefit from the fuller (ie Cox maze lessions) on the back of the heart done by Dr Barnes and others like my surgeon here in the Uk. If you are paroxysmal then these procedures may be more invasive than you need and you may opt for Dr Wolf or Dr O as Saul has highlighted.

[SusieQ2023 in reply to MummyLuv]

Yes, I am going to Barnes Jewish Hospital in St. Louis. It is about three hours from my home. I had persistent afib, but after four ablations it became paroxysmal. Now I am back in persistent.

[saulger]

Hi Susie, I only just saw your post. I had a mini-maze in Japan at 76, with Dr Ohtsuka.

The cost was small and the rewards are huge.

Tomorrow I shall be posting my five-month milestone. In NSR all day every day. Can do 11 chin-ups in a row (with some struggling), yesterday I walked up 890 risers (stairs) here in Athens. Had a third of a bottle of wine with my lunch.

A dream after almost five years with AFib.

I am not alone. Danielle (USA) who is 34 and had been permanent since she was 19 had it in Japan after me. Lynn (NZ) 61 who was persistent had it before me. Touch wood, we are all doing great !

Stay positive, it can be sorted out if the conditions are right for a mini-maze.

[MummyLuv in reply to saulger]

a wee international Dr O family 💕. we have another member of this forum having their mini maze Monday with Mr Hunter. It’s so pleasing isn’t it that more people are becoming aware there is another option especially when they have been through so much like Suzie.

[jeanjeannie50]

We've heard good reports regarding the Wolf mini maze as performed by Dr Wolf in Houston and Ohtsuka in Japan. I believe there's also a Dr Hunter in the UK . Three of our forum members have spoken here of how amazingly well these procedures have made them feel, each having mini maze procedures with one of the surgeons mentioned.

It sounds to be a little more successful then the usual catheter ablation.

Jean

[Rainfern]

I can't answer your question Susie but just want to say you are some brave and persistent woman to go through so many procedures already. And having followed the comments by Saul and others opting for mini-maze you most certainly have the necessary motivation and will to go through with it if it's offered. Good luck!

[saulger]

Susie mentioned Dr Damiano. This is an extract from the StopAfib.Org web site from 2020:

"Dr. Damiano continues to be the leader and innovator in the further development of the concomitant Maze procedure, which is done for treating afib at the same time as bypass or valve repair surgery. Also, he has innovated a minimally invasive version of the Maze procedure.

Dr. Damiano is the Chief of the Division of Cardiothoracic Surgery at Washington University School of Medicine and Barnes-Jewish Hospital in St. Louis. He has been on the leading edge of afib procedures; he performed the first robotically-assisted coronary artery bypass grafting (CABG) procedure in North America in 1998 and his group has been continuously funded by the National Institute of Health for more than 30 years in the area of robotically-assisted microsurgery for CABG. They also developed the gold-standard surgical procedure, the Maze procedure, which doctors use around the world. His work earned him a ComputerWorld Smithsonian Award in 1997.

A world-renowned cardiac surgeon, Dr. Damiano has authored more than 330 scientific publications and given more than 500 lectures and presentations around the nation and the world. He has been associate editor of the Journal of Thoracic and Cardiovascular Surgery and the Journal of the American College of Cardiology. He’s on nine editorial boards and has been Editor-in-Chief of the journal Innovations since 2008."

[SusieQ2023 in reply to saulger]

Thank you to all who replied. I considered the hybrid ablation, but my electrophysiologist and I agreed that the procedure is too new to have evidence of it being more successful in someone who has already had four failed pulmonary vein ablations. I feel a bit anxious at how fast this is all going. When I asked for a referral I expected a wait of several weeks or a month. Instead, I was called the next day and set up for tests this Tuesday (11 days from my request!) I am wondering about pain (I can't take most pain killers) and recovery time. I have a two-week trip to London and Wales scheduled for August 27-September 9 th. I know I can't go on a trip while in a fib. There is no point. I am hoping that I will be fully recovered by then. I am so tired of a fib disrupting my life! My doc says that my heart's plumbing is excellent, but I have a really faulty electrical system. WIsh me luck, as I wish you all the best !

[saulger in reply to SusieQ2023]

Hi Susie. Having had a quick look at your surgeons bio, it sounds like a Cox IV mini-maze or variant. This is what Alison (MummyLuv) had successfully done in London about a year ago.

Did you surgeon mention if it is off-pump (done on the beating heart) or on-pump ?

What I had is not the Hybrid procedure, but a thoracoscopic surgical ablation, which has also worked for people who have had three and more failed catheter ablations.

We all wish you good luck and that you will be scheduled quickly.

[SusieQ2023 in reply to saulger]

It will be on my beating heart. They do several different procedures at Barnes for afib, but the mini-maze has a better track rate to date than the hybrid ablation. I am not willing to go through another catheter ablation after four failures and a husband who seemed to suffer much more than I did during the procedure.

[MummyLuv in reply to SusieQ2023]

Edited to add a chart.

the procedure Pat in the grouo I shared had was his version of coz maze iv done minimally invasively, slightly different to what I had Saul although I had the cox box lessions done, i didn’t have lessions set 6in the diagram due to inability to reach using thoroscopic techniques through the ribs. This is what an EP may need to do if my Afib returns.. I think Dr Diamo enters differently to be able to do the full Cox maze Iv, I think he also enters from under the ribs. I thought he used the heart lung machine for the version Pat had but sounds like there are a few approaches. Pat calls him Dr Cox protege as he learnt directly from the master. A very skilled surgeon by all accounts. There are a couple of his other patients in the group I shared, it would be worth joining and speaking directly with them Suzie.

Suzie after ny mini maze I was holidaying in my own country after a few weeks and abroad for a fortnights holiday after 2 months. So depending on how quick your date is you may make your trip!

Diagram of Cox maze iv

[saulger in reply to MummyLuv]

Thank you for a terrific explanation !

[DawnTX in reply to MummyLuv]

you are the warrior we aspire to be like ❤️

[DawnTX in reply to SusieQ2023]

it’s my electrical also everything else is fine and that’s a big plus for you

[saulger]

One more !

A MUST SEE video. A great insight into the electrical causes of AFib and the effect of surgery on physiological systems. I just got the link today and was blown away !!!

Dr James Cox is considered the godfather of Atrial Fibrillation treatment. He is the inventor of the famous Cox Maze open heart procedure where scarring in a maze-like pattern is created on the OUTSIDE of the heart (like a fence) around nerve areas to stop errant re-entrant electrical impulses that cause AFib.

Minimally invasive mini-mazes do the same thoracoscopically without opening the chest. The heart is accessed from keyhole punctures on the side or front of the chest (depending on the technique used) and scars are formed by instruments inserted thoracoscopically reach the heart and to create scars by using heat or extreme cold, with the same idea as the Cox original maze.

youtube.com/watch?v=ZiVZX9w...(Not working as expected?)

[MummyLuv in reply to saulger]

brilliant video!! I love that he explains specifically the EP vs surgery approach for persistent esp long standing and WHY the EP mapping technique has lower results. That’s such an interesting study he refers to (not yet published) on how electrical mapping moves around for long term persistent and so using EP style electrical mapping has lower results as you don’t get all the misfiring/circuits.

mjames1 have a watch from about 48/49mins as he also talks about sole left appendage clipping, which he sees very positive benefit from.

Dr Cox is the original afib master in my opinion, dr Wolf has led the way on minimally invasive. We are lucky to have these guys.

[saulger in reply to MummyLuv]

Thank you, Alison, I also found it a terrific video from the master himself.

[DawnTX in reply to MummyLuv]

I love the word minimal and I love having watched you go from a fib through your procedure to now. You are such a blessing to all of us here.

[DawnTX]

I don’t know where you are in the states. I would love to hear you say Texas because I have the best of the best for medical. I’m sorry I think it’s a disgrace what they have continue to do to you instead of seeking to give you quality of life. I don’t know if you’re doctors but I already don’t like them to put you through all of that. This is all my personal opinion, but I have just been through hell for a year and a half, and if I did not find the doctor, I have now I don’t know where I’d be or even if I would be anywhere alive.

People on here we’ll probably just like me for being an advocate of the pacemaker now, because I was so against it in January. That was my ignorance not even fear when you don’t know what you don’t know. People on here got me over the fear, but it was my daughter that swaddled me in the safety of him and his team.

I had a second opinion lined up, and I had a list of questions for my doctor. The day we met, he gave me answers to my questions before I asked them. The fears that I had about a pacemaker where gone. My doctor talks to me not at me. I wanted to cry. I felt so relieved the day we spoke, and I could not wait to get to the hospital and have it done.

Think about how you’re feeling and how you have been feeling. How was your quality of life? Do you have any? I did not. I could barely get to the bathroom. I could not walk or stand without holding on, and even then only for seconds. I no longer felt like a person. I didn’t know why I existed anymore. If you knew me, you would know my joy of life and how much I love people at Cetera that was all taken away from me with a fib. Like you nothing worked for any length of time. Medicines would be doubled in two weeks and fail again in two weeks, my cardioversion only worked once the last one they tried three shocks nothing for me.

My doctor is not the favorite child I’m sure because he wants us to have quality of life ASAP. Not play games and do things to keep failing. He said why do it again if it doesn’t work. I had too much scarring after only three oblations FYI. Imagine what your heart looks like not trying to scare you but being real.

Bottom line mom and I’m not saying you need the same thing. This is just about me right now. There is a special pacemaker and procedure for people like me. It’s only been available a short time in the states. I have only met three people on here that have it only one in the states. it is high-tech it comes with anapp and back up. FYI. My fear about pacemakers has been. It’s a device. What if it stops well there’s a back up. My phone transmits everything on a constant basis 24 seven they monitor it. I also have a phone number and it goes to my doctors hospital not just anywhere. I have used it once, a doctor called me back in less than 10 minutes. I thought I was only going to get a tech.

I just had my first check up. My doctor was so excited over my EKG. He also told me he presented my case in Dallas recently and they have requested he go there to teach the electrophysiologists at that hospital so they can help people like me. I can’t begin to tell you how new this is and exciting. Oh I have people tease me about being a test dummy. That’s OK it’s better than being a dead dummy. I am spoiled by every person I have come across medically I feel very protected for the first time I feel normal and alive. The month of February 1 it was finish and then on the 27th, my AV node a blade it which is absolute must my doctor even told me before that gets done I won’t feel better I might even feel worse but it wasn’t a big deal. The worst pain of it all which was really not much is the incision for the pacemaker pocket.

I am only telling you all of this, just in case instead of a mini maze, they suggest this Mummy Luv did have the mini, and once again in Texas in Houston, Dr. Wolf is the man who pioneered the mini maze. Houston Methodist is the hospital. If you decide to go that route. Depending on age, the mini maze might be better. I just don’t know anything about it other than what I have read with my pacemaker. My app even tells me about the battery and right now mine is good for 11 years. It depends how much it gets used, originally it said 14. I’m wondering if my tachycardia had worn it down a bit

There are so many variables. All we can do is tell you our stories and we are not doctors, but because my thing is, so new I feel like I need to share so there are options for people. My procedure is not available everywhere. Not yet it’s because the doctors are still learning. As I mentioned, even Dallas is just learning it is called the Azure by Medtronic’s the leads, etc. is called HIS pace bundling if I can help even one person, get their quality of life back like I did I will be a happy camper. I believe in passing on good that you get, and I had such a miracle and blessing. There is no limit to what I would do to get other people the same outcome.