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it’s good to see mini maze being commented on more :)

MummyLuv profile image
74 Replies

my heart warmed when this article dropped in my email feed today. I’d love for more people to be aware of mini maze as an option so great to see it featured in a mainstream health publication 👏

(This is not an AFA article and so not promoted by this site)

healthline.com/health/atria...

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MummyLuv profile image
MummyLuv
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74 Replies
Jalia profile image
Jalia

Not really an option for the vast majority unless you have very deep pockets. NHS can only do so much in these challenging times so we shouldn't get peoples hopes up too much.

MummyLuv profile image
MummyLuv in reply to Jalia

Hi there, I don’t think it’s expense to the NHS vs catheter ablation, it’s surgical skills and updating NICE guidelines for when surgery should be used. For persistent afib at least two catheter ablations will be required which is the same cost as a mini maze. There is discussion now amongst the EP community about hybrids being the new treatment path for persistent afib. This is underpinned by studies, There are more surgeon’s training in minimally invasive afib surgery, my local hospital are currently training in the hybrid procedure.

My surgeon said that the procedure is little known, he would love to see more patients in his NHS hospital benefiting from mini maze where they’ve had failed ablations or are in persistent afib, there are other hospitals doing this too across England, Sharing that this is an option I hope is not just getting peoples hopes up it’s providing information for them to ask about this as an option and for some people it will be (on the NHS).

saulger profile image
saulger in reply to MummyLuv

Thanks for this, Alison.

You've had a mini maze done in London and you have first-hand experience.

As the article that you linked notes:

"The Mayo Clinic estimates that the specialized surgery restores normal function in 75 to 95 percent of those with AFib."

This is what we all wish for each other. Hugs.

in reply to saulger

I wonder if the success rates you refer to relate to the open chest Maze procedure. This involves major, high risk surgery which has been available for many years rather than the hybrid MiniMaze procedure which is relatively new.

I say this because the success rates quoted refer only to the Maze procedure and the Cryomaze and it should be noted that they are based on estimates rather than evidence. The document itself was reviewed back in 2016/17.

As I understand it, the hybrid MiniMaze procedure does not yet have much data relating to success rates although early signs are encouraging.

MummyLuv profile image
MummyLuv in reply to

There are studies on mimi maze alone which I’ve shared before and happy to dig out again, the success range is 75-95% depending on certain patient characteristics. You are correct hybrid is newer (mini maze itself has been around since 2003 in the U.K.) and I am only aware of a study in the Netherlands, of course when there is more data you’d expect it to be higher than mini maze alone.

DawnTX profile image
DawnTX in reply to MummyLuv

Houston Methodist Hospital is a teaching hospital and my doctor is training new doctors to do hybrid procedures on a regular basis. Dr. Wolf is probably doing the same for the mini maze. When I had my vein of Marshall done one of the doctors being trained was there and he was going back to Georgia I think it was. He was very hands-on with my doctor probably because he was ready to be cut loose and take his knowledge back to his own state. It’s a big world we have to hope they are constantly working on this. I like to think they are. Apparently my heart is being a pain in the neck and I just found out I had had a heart attack not sure when but in my new EKG. Not looking forward to my cardioversion but I am because I want to feel better. I think I am one of the oldest he has done so that might be the problem.

MummyLuv profile image
MummyLuv in reply to DawnTX

Oh no Dawn, heart attack! Do you have a block they need to help with too? Sending good luck for the cardioversion z

DawnTX profile image
DawnTX in reply to MummyLuv

Hi hon. No that’s the strange part since day one they have talked about no blockages, valve problem etc. The mystery continues with my pain as well as not being able to breathe or be active. I was put back on my Multaq and it has dropped my heart rate a bit from 145 or so down to 110/111. It was down to 105 last week but now it’s back up. That is my resting HR. I just feel awful most of the time. They treated me for the pericarditis and I stopped actually ended the prescription and within two days all of this started. Most likely I will be having the cardio version next Friday as it stands right now. I am scared to death the one good thing is I am well acquainted with the staff now lol I am trying to keep a sense of humor. They had done a four page blood panel on me wondering if something else was going on but apparently not as most of my numbers were normal. I just had my 70th birthday I feel every bit of that 70 years right now. Normally I say I’m 35 in my head but my body is assuring me that is not the case. If I didn’t adore my doctor I would head back to Florida to the one I had but my doctor is the best of the best and he is not throwing in the towel and taking this very seriously so I have to put my trust in him I am not thrilled with his office staff they have no sense of urgency so I finally put my foot down the other day and got to the head nurse who went to the doctor. We have to take control. It sad I had to go to that length because it stressed me and made me feel worse. Unless she’s working late the girl is doing it again. She asked me about next Friday and now has not gotten back to me again and I’m pretty sure she is on her way home if not home by now. I think staff members should have heart issues so they understand how we feel. I had one tell me yesterday cardioversion is no big deal so I asked her how many she has had. She told me you are right I should not say that. I reminded her we only have one heart so if something goes wrong it’s a big problem because I’m possibly dead. Sorry as you can tell I’m frustrated and very down. You probably know that what I had done is only two years old. I was in NSR last time the doctor saw me but I was feeling just like this so obviously something is wrong because I could barely walk to my car in the parking garage.

Thank you honey for writing me. I’m not sure what he might consider next or if they find some thing else causing this. I don’t understand how can I be NSR and be like this? Big hugs thank you again.

Buffafly profile image
Buffafly in reply to DawnTX

I had a ‘heart attack’ caused by artery spasm - no blockages. But I did feel that!

DawnTX profile image
DawnTX in reply to Buffafly

I have been having so much pain I just don’t know when it was. I have begun to take pain for granted and did not even think about a heart attack just my a fib. Thank you for telling me that

Buffafly profile image
Buffafly in reply to DawnTX

Checkout microvascular angina/cardiac syndrome X/coronary artery spasm. My consultant said the arteries can spasm when the heart can’t keep up with the AF.

DawnTX profile image
DawnTX in reply to Buffafly

Thank you

DawnTX profile image
DawnTX in reply to Buffafly

I meant to tell you I have had spasms before almost like angina. I still get them.

in reply to Jalia

You raise an interesting point Jalia. It’s reckoned that around 9000 catheter ablations are carried out in the UK on the NHS. It would be interesting to hear from anyone who has had a hybrid MiniMaze on the NHS. I’ve only heard of one member who is currently on a waiting list……..

MummyLuv profile image
MummyLuv in reply to

johnMiosh had a hybrid on NHS x

Edit was to tidy up my typo 😂😂

in reply to MummyLuv

Ah yes, part of a clinical trial just over 5 years ago……..

Ducky2003 profile image
Ducky2003 in reply to

I was offered one in January but then they discovered an issue with my mitral valve which now needs repair. If there any potential valvular issues at all, they won't do the Hybrid as the epicardial scarring makes it more difficult for them to do any surgery in future.

Regarding your above point about stats, I asked my surgeon at the point where it was still on the table, about success rares and he said they were still collating figures which he hoped would be done by March.

As I was then told I wouldn't be having it, I never asked about the data after that.

Have the joys of a Cox VI Maze to look forward to instead.

MummyLuv profile image
MummyLuv in reply to Ducky2003

Looking forward to following your journey and celebrating clear valves and NSR x

Ducky2003 profile image
Ducky2003 in reply to MummyLuv

In the words of Diana Ross, I'm still waiting 😁.x

Mrsvemb profile image
Mrsvemb

Thanks for sharing this report. It is good to know that it is becoming more widely known about. Hope that you are still doing well and have your life back.

MummyLuv profile image
MummyLuv in reply to Mrsvemb

I’m doing really well, back working, travelling, socialising, even got a wee bit drunk earlier this week, haven’t had espresso martini in years! All in NSR. I feel very grateful so far and hope that it continues. Thank you for asking xx

Mrsvemb profile image
Mrsvemb in reply to MummyLuv

So pleased for you. Oh to be able to have a drink. I haven’t had a drop for 10 years now as it is a trigger for me.

MummyLuv profile image
MummyLuv in reply to Mrsvemb

It was for me too! To be honest I’ve not felt like more than a glass or two of wine but I did enjoy some singing and dancing after a few 🍹 🍸 🕺😂😂

Gumbie_Cat profile image
Gumbie_Cat

Hope you are still doing well after yours? Also that the research into hip osteoarthritis treatments is going well.

MummyLuv profile image
MummyLuv in reply to Gumbie_Cat

I’m still in NSR 👏👏

Not into the research papers yet but been reading up on lateral, posterior, anterior with and without robotics and superpath. I’m thinking anterior with robotics but lots of research still to do and a good we while before my heart can take more surgery 😂😂

Hope you are well x

JOY2THEWORLD49 profile image
JOY2THEWORLD49

HIthere is 3 types of MAZE ABLATION open heart 1. which surgeons do when they are operating and already in, keyhole surgery, 2.

There is also another called HYBRID ABLATION.

Unfortunately as I have an enlarged heart the national specialist says NO ABLATIN for me. Boo Who..

JOY. 73. (NZ)

MummyLuv profile image
MummyLuv in reply to JOY2THEWORLD49

Spot on Joy and Hybrid I personally believe will be the door to this becoming more popular as EPs who are usually the lead for heart Rythm have a part to play.

I am so sorry to hear it’s not an option for you. One of your fellow new Zealand era has just had a mini maze in Japan and so far so good. Maybe worth a consultation with him? I can send on details by PM if useful. No problem if not x

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to MummyLuv

HiBut its because my heart chamber is enlarged. Although I haven't had a MRI. Just results from a heart ECHO Scan.

I've read that if the thyroid has caused the AF it is on the cards that it will return to normal.

Funnt that its only day time and exertion that the H/R needs to be CONTROLLED although it was at night 2am I had the Embollic Stroke. At the time I was on my left side when it happened.

Left side resting is better for the heart. I had a higher Systollic BP rate. Earlier that year was put on Lortasan but it did not work and I lost protein in my urine.

I was not on any drugs at the time.

This national cardiac specialist diagnosed me also with a sOFT SYSTOLLIC HEART MURMUR.

Research and development are the future. I will keep uptodate. NO is no until I am released by it.

Thanx for your reply.

cheri. JOY. 73. (NZ)

Also take daily pills for Ca Thyroidectory. Staying at 2.0 TSH level as advised by my surgeon. Low Risk operation and now 2 clear cancer scans.

saulger profile image
saulger in reply to MummyLuv

Hi Alison, are you thinking of Lynn Whiting? She had the WMM variant about two weeks ago, as performed by Dr Ohtsuka in Japan.

MummyLuv profile image
MummyLuv in reply to saulger

I am Saul :)

CDreamer profile image
CDreamer

Forgive me for questioning but I couldn’t see any mention of hybrid/larascopic type mini-maze which you had mentioned in this article mainly about ablation PV and AV node and open heart surgery maze which has been around for a long time. ?????

Buffafly profile image
Buffafly in reply to CDreamer

You didn’t read the whole article 🤔

CDreamer profile image
CDreamer in reply to Buffafly

Oh…..thought I had,

Buffafly profile image
Buffafly in reply to CDreamer

There are two articles, one after the other, neither completely up to date.

MummyLuv profile image
MummyLuv in reply to CDreamer

Hi there, it talks about 3 options, open heart maze. Mini maze done by RF and mini maze done by cryoablation.

Buffafly profile image
Buffafly in reply to MummyLuv

‘Instead of opening the chest to destroy the tissues that cause episodes of AFib, your doctor makes keyhole incisions on your right side, underneath your armpit.’ From article.

bassets profile image
bassets

Thank you - all knowledge is good :)

Boudica_HD profile image
Boudica_HD

Thanks for sharing MummyLuv. So good to see mini maze featuring alongside the more widely known options. Hopefully the more aware people become of its existence, the greater attention it will be given in the quarters that can have influence on putting in place the right conditions for mini maze to be considered/offered more widely in the NHS. We can but hope 😀

Buffafly profile image
Buffafly

A very clear explanation of various options. I went a bit pale when I read the description of the surgical maze procedure so good there are less brutal options!

Ducky2003 profile image
Ducky2003 in reply to Buffafly

Good job I read your comment before looking at the link. I'm supposed to he having a Cox IV Maze so probably best if I don't look at the article 🙈

MummyLuv profile image
MummyLuv in reply to Ducky2003

Brutal from the point of view it opens the chest, the procedure itself isn’t brutal 💕💕

Buffafly profile image
Buffafly in reply to MummyLuv

If you read it carefully………depends on how sensitive you are 🤫

MummyLuv profile image
MummyLuv in reply to Buffafly

😂😂😂

Ducky2003 profile image
Ducky2003 in reply to Buffafly

When I was originally offered the Hybrid, the surgeon went into great detail of what he was going to do, including a life size drawing of the zapping tool and diagrams. I could feel hubby squirming in his chair behind me.

Ducky2003 profile image
Ducky2003 in reply to MummyLuv

Ah, that's ok then then 🤣🤣🤣.x

MummyLuv profile image
MummyLuv in reply to Ducky2003

😂😂😂

Buffafly profile image
Buffafly in reply to Ducky2003

😅

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to Ducky2003

HiGood idea.

On google my last operation for removal of TVT Mesh Kit (Johnson & Johnson). The surgeon asked me to check it out. I looked after!

It was so gory.

All the best. JOY. 73. (NZ)

Ducky2003 profile image
Ducky2003 in reply to JOY2THEWORLD49

Thanks. I did have a sneaky peak at the link and, fortunately, it wasn't anything I didn't know. 😁.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to Buffafly

HiThe surgical one is used when open heart surgery is being performed for another reason.

But under the armpit or through ribcage .. sounds awkward too.

JOY. 73. (NZ)

4chickens profile image
4chickens

Yes I also read the article and agree it’s good for highlighting another option. The quicker the nhs realises that there isn’t a one size fits all procedure and becomes more patient centred the better. When I spoke to the nice surgeon he said that he could of hopefully saved the nhs thousands on me along, 4 ablations numerous admissions to cdu and repeated cardioversions against a hybrid convergent mini maze. Hopefully as more surgeon train in the procedure and more eps get on board it will become standard for some people with difficult to treat A/F. Hope your recovery is progressing nicely.

MummyLuv profile image
MummyLuv in reply to 4chickens

So agree! Would save cost and a lot of stress and heartache for the patient going through so much.

I’m doing great thanks for asking. Waiting for your date, excited for it to be you! X

rosyG profile image
rosyG

I've asked the Liverpool Heart Hospital if the person doing the maze ops can talk to our support group on zoom , He is back early September and I will post on here if he agrees . Our email is info@surreyasg.co.uk if you want to be on our mailing list so you don't miss it!

MummyLuv profile image
MummyLuv in reply to rosyG

Awesome!! Is the Paul Modi? I’d be happy to support you from a patient perspective just let me know x

MummyLuv profile image
MummyLuv in reply to rosyG

PS Rosy if Mr Mobi does not do it I am sure Mr Hunter will, let me know if you want me to ask him once you hear back 👍

Figbar profile image
Figbar

I read the article also; I was most pleased to read this.I’ve been following your surgical report and recovery; thank you for that.

I am scheduled for a wolf minimaze procedure January 4, 2023. I wish it were sooner!

Thanks again for sharing your experiences.

MummyLuv profile image
MummyLuv in reply to Figbar

Excellent, not too long to wait 💪🤞

Poochmom profile image
Poochmom in reply to Figbar

It will be here before you know it. I had to wait 5 months. The days went slow but the weeks seem to fly by. Congratulations!

Figbar profile image
Figbar in reply to Poochmom

Thank you!

manabouttown profile image
manabouttown

The Mini Maze should be offered as the 'first' ablation rather than the 'last' choice after all catheter ablations have failed. One mini maze is cheaper than two catheter ablations.

Buffafly profile image
Buffafly in reply to manabouttown

Depends, I think. It seems many people, especially those who have not had PAF for long, have good results from a Cryoablation. But maybe for patients already in persistent AF that’s a better option. And you can only offer what there are enough experienced operators to perform safely.

Poochmom profile image
Poochmom in reply to Buffafly

I opted for mini maze as my first option. Had AF for 4 years. I wasn’t interested in ablation on the inside of my heart. I have not regretted it for one minute. Not having prior ablations makes the mini maze that much more successful and easier recovery generally speaking.

Buffafly profile image
Buffafly in reply to Poochmom

You’re in the USA, doesn’t generally apply here unless you are wealthy.

MummyLuv profile image
MummyLuv in reply to Buffafly

Hi Buffafly, it’s sadly a post code lottery here in the U.K. but if you are in England there are hospitals doing this, if you want to PM me where you live I can tell you the nearest I am aware of x

Buffafly profile image
Buffafly in reply to MummyLuv

Thanks, but not for me as my AF generally doesn’t bother me too much. I am speaking generally.

MummyLuv profile image
MummyLuv in reply to Buffafly

No worries, that’s good you don’t need this :)

Hello MummyLuv! So happy to hear you’re doing well! My husband goes to Houston 8/29 for Dr Wolf’s mini maze 8/31🙏🏻 I’m forever thankful I found you and Bambi on this forum…which led me to discover Dr. Wolf!! Praying for your continued complete healing and continuing NSR! ❤️ From TX🤠

Figbar profile image
Figbar in reply to

I found Dr. Wolf on this site also( Bambi and MummyLuv).I will be looking for you and your husbands surgical “journey” on the Wolf site.

Best wishes and prayers coming your way❤️

in reply to Figbar

Oh thank you!!! So appreciate the prayers! My husband would not agree to meds required for CardioVs or Ablations - so I researched and was so blessed to find this forum. He agreed to meet Dr Wolf and really liked him… and here we go!🙌🏻 I’ll let you know how it goes! So appreciate your prayers!!❤️

MummyLuv profile image
MummyLuv in reply to

Awesome figbar and natway, here’s hoping this is the first step in getting your life back! Bambi65 x

Edit: and your husbands!

Figbar profile image
Figbar in reply to MummyLuv

❤️

Figbar profile image
Figbar in reply to

❤️🙏

DawnTX profile image
DawnTX

I am seeing it mentioned everywhere it seems even when I am looking up something about a fib on the Internet. I hope you continue to be doing well. I am being scheduled for a cardioversion should know something today. Then again being Friday who knows.

Hello Hope you’re continuing to do well! Just wanted to let you know my husband is doing great! Recap: AFib was diagnosed 3/18, he refused a CardioVert or Ablations bc he did not want to take the required medication. So my journey began to understand AFib and find something he could do that he would agree to. My search led me to this forum and I thank God and give Him all the glory for guiding me here! My husband agreed to meet Dr Wolf 5/26 and then our journey began. His Mini Maze was 8/31 in Houston and he was discharged 9/4. He had to go back to work 9/6… which slowed his recovery, but he powered through! The first 4-6 weeks were rough emotionally due to stress w/work, but he knew this was going to be the case and was unavoidable due to his deadlines. However his heart is functioning beautifully! Since 8/31 he’s had NSR, normal pulse & blood pressure! He’s off all meds except low dose 200mg Amiodarone and will begin tapering off soon! Due to his previous perpetual AFib, Dr Wolf wants him to take 8-12 weeks to taper off. His strength and energy is returning and he’s exercising every day now. He’s focusing on his diet, eating clean, and continues to intermediate or 24 hr fast… this works well for him and he’s losing the weight he put on while his AFib was perpetual. We’re forever grateful for finding this community, then Dr. Wolf, and you! Praying you and yours are doing well! ❤️‍🩹fromTexas

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