I thought I would give you an update as I have had my 6 month (and final eeeek) review with my mini maze surgeon Mr Hunter this morning.
All has been going well, in sinus rythm since my mini maze. I had a two week heart monitor a few weeks ago, all good!
I have a low burden of occasional PVCs, they don’t bother me and had been getting very rare until I cought COVID 3 weeks ago and they increased a little but they are settling down again now. No issues with exercising.
I’ve had no side effects from the surgery, healed quickly, back to normal life after about 8 weeks. I’ve been on holiday with family and with friends and no issues and I am back enjoying life.
I have one little area that is impacting and I’ve had this 3 times over the last 6 months - Bigeminy. I get this with high adrenaline. It makes me feel light headed. It was recently triggered by public speaking which is part of my job and defo increased adrenaline before getting up on my feet. Mr Hunter will give me a prescription for metoprolol as a pill in the pocket to take an hour before I am public speaking, it lasts 4 hours so will be quickly out my system. Given this will be infrequent, I am happy with this.
So all is good, after many years of persistent afib it still feels unreal! I see my local cardiology team for the first time since my mini maze this Friday and I am sure they will be pleased to see the success
I hope I’ll be writing as positive a one year update. I realise mini maze/hybrid has been the subject of much debate on the forum. I still believe it was right for me for long term persistent and I didn’t want to be on drugs long term. It is not as widely available as catheter ablation sadly and so accessing mini maze is a postcode lottery unless you are fortunate and can access privately.
Pic is of my daughter and I on a tender from our cruise ship on holiday in Oct. Life is good 💕🚢
Great stuff! Good to know there's alternative treatments for this horrible condition, thanks for collating and publicising it's availability (fortunately my PAF of 8 months has been abated by a single cardioversion since Aug so hopefully I won't need it!). Thanks again and carry on with the party!!
Fab News, I am so pleased for you. I’ve been watching your ‘journey’ with great interest and it’s so nice to see a success story like yours. Long may it continue x
That is such good news MummyLuv. I am glad you have such an improved quality of life. Thank you for always telling it like it is and letting us know about the occasional pvcs and bigeminy. It’s good to know absolutely everything. Maybe they will disappear over time. I look forward to another positive update in a years time. Enjoy your new NSR life MummyLuv x
I started sharing this journey with hope but not knowing what path it would take, I think it’s important to share warts and all, hopefully will help others thinking of taking this journey, I hope you are well? X
Mr Hunter said exactly that actually , the PVCs may disappear and they were already becoming less. He said the bigeminy will prob also stop as I get back into the swing of public speaking, the adrenaline will still be there but not as strong.
Still in persistent AF unfortunately, but still looking to pursue mini maze if possible. I went through my GP here in Devon to find out if I could get a referral for assessment. She referred me to local arrhythmia team to ask the same question. Unfortunately that all led to a dead end so I am going to contact the consultant direct now. Fingers crossed x
hopefully I rang Sheffield today to ask if they could give me any time frame. I’m the top of the list now but because it’s 2 specialist involved getting a date is more complicated. The hold up is Dr sahu apparently, the lovely lady I spoke to was going to email him again straight away and was hopeful for Dec still. I’m so pleased that your outcome has been such a success, you did so much research and all your hard work has benefited not only you, but also me and I hope many others. It inspired me to not give up and accept a treatment that I knew wasn’t right for me, it gave me the proverbial kick up the butt I needed, to fight for what I wanted. Just need it to happen soon now, my dream is to start 2023 af free, oh and book lots of holidays to make up for this year. X
Thank you it’s been a difficult 6 months in afl. I hope you also get to see the consultant of your choice. Seeing Mr Hunter privately initially was the best money I’ve spent, and if I hadn’t been a candidate for the surgery on the nhs, we’d already decided we’d do everything in our power to find the cash to proceed anyway.
yes paid for initial consultation £465, mr Hunter was quite annoyed that I’d had to pay as consultant in leicester wouldn’t refer me, he immediately took me on as one of his nhs patients. Privately it would of been in the region of 40k.
Hi So happy you are well! You look so well in the pic! As a matter of fact you look so young, I wasn’t even sure who is you and who is your daughter! 😊I wish you all the best!🥰 FYI I am still waiting for my hybrid intervention and I doubt it will ever happen! Although due to the fact that my AF has worsened recently, the EP at Royal Brompton, Prof Wong has sent a letter to the cardiac surgeon, requesting him to prioritise my case. The problem is that it’s exclusively up to the surgeon when it will be my turn. And you know the joke: What is the difference between God and a surgeon? The answer: God doesn’t think he is a surgeon. Take care and lots of love 💕 x
Excellent news. Just driven past NGH on way back from shopping at the mighty Meadowhall Centre close by. So pleased you have had such an amazing outcome. Good old NG hospital and Mr Hunter, my local teaching hospital trust.
So pleased for you, if your life is much improved, that’s all that counts. Long may it continue and keep on posting your knowledge and experience, it is second to none 😊
my goodness this is fantastic I was wondering how you were getting on ! So pleased it’s working out for you 👍 you are giving a lot of people hope … 🙏🙏 i just had my ablation last week going well so pleased. Keep enjoying life ! Which I am sure you are 👌it’s all been worth it x
That’s wonderful news, so pleased for you! I’m still in NSR 4 months after my 4th cardioversion (3 months after my 2nd ablation). Here’s hoping we both stay in NSR and thanks for your updates.
Such great news - this must be wonderful after being in persistent AF for so long. Mine seems to have become persistent - three weeks now. It’s only a month to my catheter ablation, so I’m crossing fingers.
What a lovely picture of you and your daughter. So pleased that you are so well and still enjoying NSR. Sounds like you definitely have your life back. You have done so well and long may NSR continue.
I was planning to approach Dr Hunter in London. My AF is paroxysmal. However, I have a lot of intolerances and the latest one that I have proved is dairy. Since stopping dairy I have not had any episodes at all. Will see how it goes.
Kia ora. Fantastic news. As a newbie to this forum I've never heard of the mini maze. I'll do some searching on the forum.
I have no idea if it's a procedure that is available in New Zealand, we are normally 10 years or so behind the times over here! I'm 8 weeks post my cryo ablation and I'm feeling really good, so fingers crossed this holds.
I just had a quick search and read about mini maze. You must be an amazing and brave person. Glad that you are feeling great and that it has been a success.
super glad to hear your six month review today. Enjoy your NSR , heaven knows you deserve it with your positivity, forward thinking and friendly caring attitude.
An excellent review and great news that you are doing so well. You certainly have been a good advocate for the procedure and also a bit more realistic about its availability here in the UK than some, but the hope is that it will improve over time so others in long term persistent AF might benefit…
As a newly diagnosed 46 soon to be 47 year old with persistent Afib this post gives me hope. I recently had a echocardiogram and although I haven’t read the full report my EP Dr Ullah says no structural issues or damage which is a relief. Get the full report tomorrow. I’ve looked up so much information as I don’t want to be on drugs forever at my age. I’m hoping I can be fixed before a mini maze procedure would be necessary. Mummy luv I hope this continues to keep you on track in nsr for a very very long time. Thanks for the hope.
MummyLuv fantastic news! Can I please ask, what is the success rate for this procedure and is it a 'one and done like the Wolf Mini Maze that I have been reading about?
it’s very similar to Dr Wolf, pulmonary vien isolation, left appendage closure, mine also did lesions on the back of the left atrium, dr Wolf targets ganglionic plexi. For very stubborn cases there could be the need for a catheter follow up (this is the same with Dr Wolf). Depends on your stage of AF whether this or catheter is more appropriate, the success rate quoted for mini maze is 80-90%.
Congratulations, MummyLuv, I am sure that all of us would trade places with you. I understand that the heart will settle down even more when you get to 12 months post-Op.
Wishing you continued amazing life in NSR with your loving family. Saul
I’m 48 here in the US. I’ve had two ablations and countless cardioversions. I’m scheduled to have a hybrid ablation on 11/18 and am very nervous. But, persistent afib for over a decade has been miserable. Your post couldn’t have come at a better time. Thank you for sharing this with us. I’m new to reading this forum and will have to go back to read more about your journey. Wishing you a lifetime of NSR! Jules
you’ll do great! The success rate is really high. I posted a link to an EP conference on is hybrid now the good standard for persistent afib you’ll find interesting x
Did you have to go private for your op or did you get NHS funding ? The dreaded pace and ablate has been mentioned for me but am on w/l for a 3rd more aggressive ablation before this . I am a 57 year old lady , started with AF age 52 post clinical depression . Was it Sheffield you had your op ? I am in Nottingham . TIA .
hi, I did go private as I live in Scotland and can’t access the mini maze here. My surgery was carried out at Harley St in London by a surgeon who works out of Sheffield northern general. You are fortunate to be in NHS England where you can ask for a referral to an individual consultant. Best of luck with your 3rd ablation!
another poster on here asked if you would be able to divulge the private cost of the surgery , I too would like to know in case I need to go down that route . I have an idea of how much a private cardiologist costs for consultation as I went down that route twice in the early days of my AF when I was getting nowhere on the NHS. No idea how much a private heart surgery would cost though !
you are the poster child for positivity and what could be done possibly for us. Still so many questions and not enough answers because we are all very different but watching you these last six months gives many of us hope.
I am only two weeks with my cardioversion and grateful for the peace right now. Thank you for sharing your journey with us.
Hi mummy luv so glad to hear you are doing well and enjoying holidays with family and friends. I have covid at moment, heart rate slightly raised. Keep giving us updates on how things are going. Best wishes.
covid 🥲🥲🥲 the kids and I had it for the first time 3 weeks ago. Mr Hunter was telling me there is research funding and research starting on the impact of virus’ on arrhythmia and vagal syncope.
Its so good to hear they are funding for research on this. I have my daughters family living with me at mo waiting for house move and I’m hoping they’re not going to catch it. Heart rate in 80’s hoping it won’t go much higher.
there are a few places I know of but the only one I can recommend is Mr Hunter. Sheffield, Liverpool, Newcastle, Coventry, Plymouth, Brighton, there are more doing hybrids
😆😆 have to laugh or I may go the other way. Yes I’ve spoken to them but I may as well speak to my dog. Long story short I’m basically on my own for the time being. It’s been over a year now since my op. Feels like a lifetime to be honest. No other heart issues prior to op. Whole host of them post op.
Infact I’ve got a feeling it may have been my dog who performed the operation.
Write down the history of what you have medically and what you had done and the issues and I will sound them past Sandi who administrates the WMM FB group. She is a trained nurse and had 3 failed CAs before the successful WMM.
They don’t consider it “failed” though as I haven’t had meds or af since February. That’s the problem. Yet they seem to ignore the mountain of other crap I have to deal with.
They have given me a stressed mri now and apparently the results were ok so I think they’re as good as done with me now.
In regards to the rest, if you read some of my previous messages from my time on here you’ll get your answer 😆 I’m all or nothing. But in regards to over exercising I wish that I even had the possibility for that to happen but there’s no chance.
I am off in a week and plenty to do so will not have a chance to look at you previous posts on the forum. I recommend an ECG watch or Kardia or similar to document what your heart is actually doing when you are not feeling well. Kardia has a paid service where you forward the Kardia reading to their cardiologist and get a medical opinion for a reasonable cost. I would do that. Good luck.
Thanks for advice saulger. Appreciated. I already have an Apple Watch series 6 since February 2021. Worth its weight in gold and I always recommend them to anyone enquiring.
Yes MummyLuv, very very reasonable and affordable. Treating an enlarged prostate (sorry for the surfeit of information) is £12,000 in the UK privately, and it's an outpatient procedure. I've been trying to tell folks about it !
Always a joy to read your positive and uplifting posts.Good to see you living your best life and enjoying it all. Please keep us updated with your progress, which will hopefully carry on successfully.
I have to confess, I started reading without my glasses and thought you said a side effect was bigamy 🤣🤣🤣. Be interested to know what the recommended treatment for that would be 😃.
I am encouraged once again to read your report. Thanks for posting it! I had my virtual consultation with Dr. Wolf two weeks ago, and I await scheduling for the procedure in Houston. It looks like late March/early April, which seems a long ways off, but it is what it is, as they say. I am paroxysmal still, and when in NSR feel just fine. But those times in afib are awful, and the beta blockers do nothing but make me feel even more tired. If I could snap my fingers and be on his table tomorrow, I'd do it. Several people have posted that they would like to know more about the procedure (I wish I had a year ago when diagnosed initially), and to learn more about Dr. Wolf's procedure, see: wolfminimaze.com/
One of Dr. Wolf's patients, a retired nurse, also maintains a Facebook Group that you can petition to join if you use that platform.
Here in the U.S. the procedure is covered financially mostly by Medicare--our version of humane health care that we pay into while working and which provides coverage when we turn 65--and the rest by a secondary private insurance I bought when I retired. (I am 70.)
amazing, it’ll come round in no time. Yes 2018NSR is an Angel to many of us, listening to us when we first embark on the mini maze journey, helping us educate ourselves, never judging. A very special lady indeed xx
I had the Wolf mini-maze procedure 2 weeks ago, and I’m so glad I did. I wish I had known about him 4 years ago, before my ablation, that didn’t last. I do not have to take blood thinners any more and I should be off of all meds soon! I had the loop recorder implanted yesterday when I went in for my follow up. Everything is good so far!
yes, we were…pretty good , but I’m sure I’m still healing. So hoping some of strange things, like spells of exhaustion, which come and go for no particular reason, and the odd flashing lights, will eventually disappear, they seem to be on the wain…I nearly forget I’m in sinus rhythm! I think the mind does funny things to you when you have a condition like ours…
hi MummyLuv , just wondered how you were getting on in 2023? I've had 2 ablations here in the UK but sadly am back on drugs to control AFib that has returned. I was wondering about asking my NHS consultants here in Leeds if they have done the procedure that you had.
hi there, I’m not aware of a cardio thoracic surgeon in Leeds but they may refer you to Sheffield. Bear in mind an EP/cardiologist doesn’t do this surgery and may not even have heard of it. I’m 10 months post surgery now and all going great!! 😍
Thanks for such a quick reply! I will mention it to the Leeds arrythmia nurses and see if they know anything about it. Do you know if I can ask to be referred to Sheffield and the specific consultant as an NHS patient at all?
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Atrial Fibulation from cancer treatment not standard Afib. Update post EP Consultation 
Hospital Appt later
