went to see Mummyluv’s nice surgeon today, I can confirm he’s very nice and gives you so much confidence. The long shot of the appointment is that I’m listed for a convergent minimally invasive hybrid mini maze, and clamp the left appendage. Best of all it’s on the NHS. Going to be a few months but that’s ok. I’ve done a little happy dance but think people thought I just wanted the loo
Excited and hopeful : went to see... - Atrial Fibrillati...
Excited and hopeful
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4chickens
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Fabulous!!! The news and the dance 😂
Excellent news, please let us know how you get on……
I can’t tell you how happy I am for you!
Having an EP cryoablation and mini maze at the same time is obviously the right route for your arrhythmia, I had lone afib so hence why I had mini maze and will only have EP cryoablation if needed later.
I so wish there were more teams of EPs and surgeons working together like this across the NHS. I have absolute faith you have the right man by your side now! No pace and ablate 👏👏
So looking forward to following your journey xx
Happy dance
Hi MummyLuv, may I ask who your EP is where you had your mini maze done? Sounds as though you've found he A-team!
Yes of course, this procedure is actual surgery and so not done by an EP, it is done by a cardiothorasic surgeon. My surgery was done by Steven Hunter who practices at Sheffield teaching hospital, he did my surgery privately at Harley Street as I’m on Scotland. Here are his details.
thekeyholeheartclinic.com/a...
Glad it has sorted your heart out, could I be very cheeky/nosey and ask how much? You can PM me if you don’t want to reply here.All the best, Jackie
My private costs all in were just over £30,000. I had no complications and was out of hospital a day early so Costa could be a little higher. If you are in England then your initial private consultation is £450 to know you are eligible then you can follow the same route as 4chickens and ask for NHS.
Thank u MummyLuv, I live in Sheffield so feel very lucky to have someone like that on my doorstep if needed in the future. X
You really are! I went all round the world for consultations (I know I am fortunate to be able to do that) and I landed on the man in Sheffield! I still feel that I absolutely made the right decision!
I was told I'd have to go to Leeds by my EP so am a bit confused by why he told me that.
That must be a different procedure he is proposing as I don’t think mini maze of hybrid are done there.
Am not sure what proceedure it was but it was to prevent blood clots forming as I have struggled with bleeding from the anti coags. Nearly gave up on the anti coags but ended up on a lower dose which would be deemed too low. Lol....
Wow, that is something Nt Hunter can do for sure! He can clip the left appendage and remove the need for anticoagulants right there in your local hospital! I’d be asking your EP why this can’t be done.
Thanks I will ask him. Am due an annual app but not heard anything yet. I thought the clipping you mentioned was part of ure op but its separate process? He also said I wasn't suitable for an ablation as my p-afib is chemo etc induced so might be caused by other parts of the heart misfiring. I dont really understand it tbh. I think I need a longer consult with someone who can sit and explain what parts of my heart are triggering the P-Afib. I sont think that has even been explored. Don't get me wrong my EP is very nice but feel he has written me off.
The left appendage can be done as a separate keyhole procedure if anti coagulants are making you sick, however, given you have afib too personally I’d be asking that EP to refer you across departments to the cardiothorasic team to have a consultation with Mr Hunter to discuss both things.
I’m having my left appendage clipped at the same time as the rest of the procedure and in Sheffield so on your doorstep. I’d ask your EP why Leeds
Hi can you explain what a mini maze is please
It is a keyhole surgical procedure where abalation is done from the outside of the heart (EPs do from the inside), the surgeon uses cameras to see what he is doing and the lesions he can make using his instruments tend to be more robust. He also clips your left appendage which is where most of the afib stroke risk is. This has a higher success of reducing strokes than blood thinners. I am now off all meds as are 85% of people who have a mini maze.
Very happy for you Chickens!!
I also have found a wonderful cardiologist here in Canada who does mini maze, and I had an appointment with him via Zoom a couple weeks ago. Here you have to have 2 failed ablations in order to be a candidate for the mini maze procedure. Here is an article about him
unityhealth.to/2021/03/surg...
He is also very kind.. He reviewed my case with his team and I have an appointment with a cardiologist On Aug 8 who works with him. What I don’t understand is that he does arrhythmia surgery as well but he’s not an EP. Sounds like he will be the one to operate though…not 100 percent sure.
I wanted to get in with his A team here so that if I ever need. Mini maze, Dr. Bisleri will perform it….
So i know how it feels to finally have found the A team!! I feel quite lucky…
You are very fortunate as I understand he is the only one doing mini maze in Canada at the moment. I’ll be watching for your story, please let us know how you go 😀
He has a kind face, I know that’s no indication of his skills but goes a long way to put you at your ease. It maybe that there will be a cardiothoracic surgeon doing the mini-maze then an Ep doing an ablation straight after. That’s what their planning with me. Good luck and keep us up dated.
Unfortunately… here in Canada you have to have 2 failed ablations in order to be a candidate for mini maze… So I will only get cryroblation…but if it ever fails I will be in line for a mini maze …
It’s similar in the uk to be considered a nhs candidate you have to meet certain guidelines, one of those as failed ablations
Seeing Mr Hunter tomorrow 4chickens (privately). Is that what you were told then? You must have had a failed ablation before being eligible for a mini-maze?
Great that you’ve got an appointment to see Mr Hunter. He judges each case individually but rule of thumb seems to be failed ablation, intolerance to medication or if your AF is more complex.
blimey, really have great hope then "intolerance to medication" is an understatement. Honestly many times over last 18 months when I just wish I never got diagnosed (daft I know), at least I would have my career and my life back. I know that is a silly thing to say as likely be much worse, but I certainly didn't feel like I do now on medication.. 
Great news and hoping all goes well. Keep dancing! Xx
So pleased for you, and great news to get this on the NHS.
That is excellent news. There is light at the end of the tunnel. I am so pleased for you.
Do you have PAF or persistent?
What’s his name? I’m seeing my guy at St George’s London in a week, I want to name drop him.
Congrats btw!
Steve Hunter
I'm so pleased to hear your good news.
I went to see my cardiologist last week with a list of questions to ask him, one of them was about the mini maze and did he know of Steve Hunter. Unfortunately, I saw who I can only describe as an elderly man who had probably retired years ago, but then volunteered to step in and help with the backlog of patients.
I'll be very interested to hear how you and MummyLuv progress.
Best wishes.
Jean
What a shame, Jean! To be honest suspect most EPs won’t know much about mini maze unless they are involved in hybrid procedures. I live in hope that things will change though 🤞🤞🤞
It was my cardiologist I was booked to see, not EP as he'd discharged me from his care a few years ago. He said I was one of the people who aren't helped by ablations. I'd had 3.
How are you feeling?
Jean
I’m doing great, just going about my life now, off to Portugal on Saturday. Have had the odd glass of wine or two as well which is lovely. I think diet drinks are triggering PVCs as had a couple of bouts when I drink them so it’ll do my general health good to give those a miss 😂😂 Hope you are doing ok? X
Glad to hear that you're doing so well.
Artificial additives, especially sweeteners are a sure trigger for my AF. I guess your diet drinks could contain those.
Unfortunately the sulphites (preservatives) in wine are often a trigger for AF sufferers too, though you can buy some sulphite free ones.
Jean
Hi Jeanjeanie, , long time since I posted . There is a lot of new terminology!! What is a “ mini maze” and “ hybrid “. ???Years of Persistent AF after mitral valve repair and 3 unpleasant long failed ablations. I’m out of touch with it all.
Luludean, mini maze has been around since 2003 but is so little known in the U.K., I have no idea why as it’s a very successful procedure for persistent/permanent afib, I’ve answered above what the procedure is but also documented my journey if you read my posts. Feel free to PM me if you have any questions.
I’m chatting to quite a few folk on here by PM which warms my heart there may be an option for them
Just lost all of the post that I'd written to you.
So to start again, MummyLuv has explained mini maze well (she's recently had one). It's carried out through the wall of the chest by micro surgery and is minimally invasive, a cardiothoracic heart surgeon carries out the procedure, not an EP.
Hybrid means a mixture of two things, so relating to AF and the heart it's often a mixture of two procedures which are generally carried out through the wall of the chest.
Jean
Damn that JJ…. How annoying.
That’s a real shame Jean maybe time to visit those friends in Sheffield. It’s the first time in 11 years that I’ve been treated like an adult with a brain not someone who just says ok Dr. I’ve got to tell my EP tomorrow that I’m not coming for my ablation on the 27th and I’m dreading writing the email, feel like a school child again disappointing my head teacher.
Someone else will be delighted to take your place so don't worry about that!
I am beyond thrilled for you chickens! Isn’t it just pure happiness and relief that you will be able to get this fixed once and for all. As for your EP? It’s your body and your healthcare and he doesn’t get to choose what treatments you have or don’t have! Off with his head I say! 🤣
Can’t wait to follow your progress! It thrills me beyond belief that my friends in the UK have options now!
Don't stress about it! It's your heart ❤ after all.
Oh what a shame Jean. My cardiologist and EP also not keen on recommending anything other than RF ablation. And I'm not sure if they'll do a third. If not then it's a switch to rate control meds and giving up on chasing NSR. I'm planning a second opinion with a private consultation. Can't afford the procedure privately but can manage the consultation fee.
Please use that private consultation money to see a cardiothorasic surgeon rather than another EP 😘
Thanks for your input, as always! X
Sorry yo hear this Jean Jeanne.....what a shame. Doubt he is really clearing the backlog as theyre all end up being referred back...lol. You deserve far far better...
Excellent news. Where are you having the procedure done.
Thats my local hospital, well the Northern General and all the other hospitals in the city which make up Sheffield Teaching Hospitals Foundation Trust. I was a Governor there a while ago, I know it well from that aspect and of course as a patient there. Chesterman wards are in the more modern part of the hospital as you will have found. It is a very large NHS Trust with only the Northern General sited at that end of the city. The other hospitals in the Trust are on the south west of the city, the Royal Hallamshire hospital, Jessop hospital for Women, Weston Park Cancer hospital, Charles Clifford Dental Hospital.. Then separate from the Trust is the Childrens Hospital Foundation Trust and Sheffield Health and Sociak Care NHS Foindarion Trust. I am so pleased you have found a surgeon and procedure you were looking for. Best wishes.
That's wonderful news! So marvellous that it's on the NHS too. I wish you the best.x
AMAZING! so pleased for you. What's the secret of getting it dine on the NHS?
To be honest I’m not sure how it happened, but I’ll try my best to explain I contacted the chap I wanted to see secretary and asked how to get a referral to see him as out of county. Apparently your own gp or cardiologist can do this. Mine wasn’t playing ball. My next option was to see him privately, which is what I did but in an nhs hospital, you pay for his consultation and the hospital for the room and ecg. I went to see him not knowing if the procedure would be an option for me. Or how much the total cost would be if it was, and if I could raise the funds. An ecg later and it was all systems go. He asked if we had health insurance, we don’t, he was quite surprised I was self funding. Then just said right I’ve issued you with a hospital number your in the system from now on your nhs, if your happy with that. I was ecstatic as you can imagine. I asked if I needed to do anything and he said no apart from cancel your upcoming ablation. He’s writing to my gp. Now I just need to wait. Sorry this is a bit rambling but think I’m a bit shell shocked.
Good for him! You're correct that in England you're entitled to be referred to any English Health Trust. Sadly, not the same here in Wales, or Scotland, where Mummylove is I think? Provided your GP plays ball. I guess your situation met the NHS criteria. Maybe if you get a chance you could ask about that? It'd help others. I'm guessing it's your unusual AF and AFlutter combo being on a particular side? Did I understand that right? Maybe simple ablation wouldn't do the job. Hence you qualified...
Yes that’s correct, re referral from a gp or cardiologist, my gp declined stating it had to be cardiology. Hence the private consultation, once you get to see the person of choice it then is up to them if they accept you and if you fit the nhs guidelines, I do, as have 4 previous failed ablations. Yes apparently it quite unusual to have fluctuating af/ afl circling in the left ventricle. Don’t know how he knew. One feel of my wrist and listen to my heart, a bit of head scratching and off for an ecg. As soon as he sees that he confirmed the above. 11 years and nobody has mentioned this before. He also said that another ablation on its own would do no good and it’s likely that the previous ablations and sotalol have caused the flutter.
Coz he’s bloody good and VERY experienced! 5000 heart surgeries. 2000 afib and clocking up hundreds now by keyhole. Took me 6 months of research and 4 consultations across the world to then choose Steven Hunter. I am sure I shared he was doing a mini maze on a London based cardiologist after me at Harley Street. That’s obvs not why I chose him but it certainly gave me comfort on the day.
He is so humble too, if he can do you on the NHS I am sure he will 👍
He was very humble and down to earth, I was amazed how quickly he diagnosed what was going on. The ecg just appeared to confirm what he’d felt and heard. Watching him interact with the rest of the staff in the outpatients dept you could tell he wasn’t just respected but well liked too. I got the feeling that he wants as many people to benefit from better treatment regardless of ability to pay. Although he’s not a fan of the cqc especially when I mentioned that a visit by them had I triggered my AF one time 🤣
He is only doing private work to make this procedure better known, he is frustrated that people can be helped but don’t know about it! I’m so excited for you. Yes you’ll have recovery but you have a good chance of being drug and afib free 🥰
Cqc?
Have they given you any idea how long the waiting list is?
He said a few months but nothing more specific. Did say they have 2 cath labs so waits aren’t massive. I was hoping this side of Christmas 🤞
The really good consultants are always humble in my experience.....if I meet an arrogant put you down type I run for the hills these days as I regard it as a big fat red flag!
Man knows his stuff. So pleased for you and also fir this knowledge bring shared wuth the group. I guess re the interesting case info - you only find what you look for. If your mind is open to other possibilities you'll find them if they're there. Salutary to reflect in this re the way medicine has developed
Thanks sing well. That's helpful to know as I'm in Wales!
Wow, you are one lucky chicken!😇. Did you have to wait long from when you had your consultation with him?
I saw him yesterday for my consultation which was a week after I requested an appointment. He put me on the list there and then and said it would be a few months, so not sure exactly how long I will wait, I could do with shedding a few pounds so don’t mind a bit of a wait, especially if it increases my chances of success. As soon as I have a date I’ll make to shout it from the highest tree.
That is fabulous news all round. So pleased for you 😁
Wonderful news for you.......I hope to follow, been in permanent AF since 2016 and now the opportunity to try and return to NSR is an exciting prospect good luck. Roy
That's so great! 😁
Oh wow, excellent news. Im also considering this so very interested to hear your news and journey. How did you manage to get it on the NHS?
You need your existing EP if you have one to refer you or your GP. Then you have to be a suitable candidate and fill the criteria.
This is great news, well done for making the leap. Keep us posted. Wohoo!
Wow that's amazing to have that option on the NHS.Please tell us more as many will be interested for themselves (me included)....and keep us updated on your situation. I'm feeling chuffed for you ( without adding any expectation) I know what it's like to manage your own and others expectations at these times.
Love the happy dance!!
Pleased for you, please let us know how it goes, interested to hear.
~Absolutely totally awesome - thrilled to pieces for you & so wish I had that option in NZ but not available here~
There are 2 surgeons in Australia as I understand it. (It was stated at a conference I watched) I’m sorry I don’t know their names. Dr Otushka in Japan too. Not accessible to everyone I realise as you’d have to pay but I wanted to share
~Bless you MummyLuv - been following your progress with great interest.With our boarders now only just opened here + other mitigating factors I needed my ablation procedure sooner rather than later.
As often the case may be facing more ablation as new issues almost 6 months on although may be still healing I hope...........
Recall this is where you chose the mini maze.
I have private insurance - I will keep praying a Cardiothoracic surgeon might like to emigrate to NZ & initiate this procedure ~
What great news this is. A couple of months waiting is nothing when you’ve been in afib for 10 years. I am so happy this is now being offered for my friends in the UK. Happy for those who want to take it that one step further. You will do great. I had my mini maze 4 years ago and haven’t skipped a beat since. Will be anxious to follow your progress and Mummyluv will be such a great resource for you during your recovery. Yay for you!
Hope all goes well for you. x
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