gutted that mini maze / hybrid not going to be available at ERI for Scottish afibbers

[MummyLuv]

I have shared a few times in the last 6 months that my local hospital are training up in mini maze / hybrid procedures in partnership with a hospital in the Netherlands who are very experienced.

I was at Edinburgh Royal today and my EP shared that the surgical team are not progressing as there is a lot of training required to really understand afib and be able to undertake afib surgery in a minimally invasive way 🥲🥲 I can’t tell you how gutted I am as I had been so hopeful that this would become available in Scotland in the near future.

My EP said he’d love to be able to offer what I’ve had to his patients locally.

Of course I am grateful I have been able to access this surgery but I can’t help feeling deflated that it is not going to be available to others on the NHS in Scotland anytime soon

Gosh, how I wish more surgeons would invest the time to learn this very specialised area 🥲🥲

#minimaze. #hybrid. #Scotland

[DawnTX]

no I was not thrilled with things with my doctor on the VOM I am aware of all the training on a constant basis just a Houston in Methodist Hospital alone. When a doctor is training another doctor in things like mini maze and VOM it is a long and tedious process. The doctor working with mine when I was there was almost about to go home to the state of Georgia where he will bring his knowledge and training back. Because these processes that is so intricate to be done not only takes time but the doctors need to find the right doctors to hand it over to. I have a feeling not every EP on fellowship gets an an opportunity. DeBakey cardiology is amazing as you know because Dr. Wolf is also from there. I had a chance to talk to the trainee who worked with me and I can see in my medical records what he got to do in the surgery. Yes this is going to take a long time. Go back to the days of open heart surgery etc. anything worthwhile must be done right. It could be another six months I may find that the VOM was more helpful than I thought. My current doctor has not mentioned another ablation because I am holding steady since my cardioversion. We want everybody to have what feels like a miracle procedure but if it becomes too common and then maybe it means it fell into the wrong hands to less qualified. We only get one heart so we don’t want that to happen. I am still let down by my doctor however that does not mean my procedure is not helping me. Originally I was told it could be up to a year. One thing many of you may notice is that doctors that do surgery often are not people persons lol they usually have the personality of a piece of paper a blank piece. I knew that from day one the communication between mine and me was horrible but I am going to keep thinking he knows his stuff he has been written about etc. take a deep breath everyone they are working on things to make us better. Mummy is the poster child of The way things might be able to be for us. Don’t give up I am getting over my upset on a personal level with my doctor because today is three weeks of a great heart rate and that would not have been possible even with a cardioversion if my VOM did not work. Let’s all pray for each other that every day that goes by another doctor is trained

[MummyLuv in reply to DawnTX]

indeed Dawn, Mr Hunter is out presenting to trainees at the moment and will hopefully train some protégés for our English friends. I really did hope this would be coming to my country, scotland, soon but sadly not 🥲

[DawnTX in reply to MummyLuv]

So sorry it has not happened yet. My doctor has a trainee no working with my former EP in Florida he is the first in that area so indeed it takes quite a bit of time and it was simply luck that I ended up where I did with the VOM

[fairgo45 in reply to DawnTX]

VOM?

[DawnTX in reply to fairgo45]

vein of Marshall

[saulger in reply to DawnTX]

I almost misread your comment as "surgeons having the personality of a blank cheque".

I'm happy to hear that your CV is holding firm and the signs are good. Be well.

[Ozette in reply to DawnTX]

What is VOM? I don't know all the abbreviations for conditions and procedures so it would help if when writing posts people could spell out the words in the beginning before using abbreviations. Thank you.

[MummyLuv in reply to Ozette]

Vien of Marshall. It’s a common place for afib to originate, not as common as the pulmanory viens though.

[depotdoug in reply to MummyLuv]

Thanks MummyLuv, I had what my newest EP, super EP I tag him called an aggressive ablation June 24th in Indianapolis hospital. My 4th. Yes EP did PVI redo and found more recurrence of electrical signals to ablate again in pulmonary veins. Plus he was successful in ablating my VOM with ethanol injection. He also went aggressively at my LA and LAA. What shall I say, experience counts with the up to date trained EP. # 6 EP. He also did my Watchman LAA implant just 32 days ago.

[MummyLuv in reply to depotdoug]

that sounds very thorough, hoping you find long term NSR 😍

[depotdoug in reply to MummyLuv]

Yes my first 6 months of 2022 were terrible after what I thought was a successful new Laser Cardio Focus ablation (#3) January 4th. It lasted 5 weeks. March, April, May and June I drove myself back to same hospital ER because I knew I was back in persistent AFIBA-Tachycardia. Four cardioversions, two different heart rhythm control meds, rate control meds, yes hated Flecainide I said enough is enough. Took advice of both my EP's at that time and made calls to Ascenscion St. Vincent Hospital Cardiology EP office. But, with a little help from my StopAFIB.org leader got connected with one of the top EP's in the USA and World. Dr. Eric Prystowsky. His close EP colleage Dr. Parin Patel took me on! Sure glad he dis for ablation #4. Yes, he is trained instrumental in the VOM procedure among other newer top ablate processes. I found out point blank from Dr. P. if only if or when I need a Mini Maze outside the heart ablation, they have cardio-thoracic surgeons that perform that.

[MummyLuv in reply to depotdoug]

you sound in good hands! I admire Melanie Truehill and what she has done

[depotdoug in reply to MummyLuv]

Exactly. Mellanie True Hills is phenomenol in helping AFIB peoples. I've been on a HRS writting committee for CPP Guidelines of CRT for people with heart failure. Plus a couple of ICD/pacemaker projects for researchers. Time for me to learn more about your journey Mummy Luv.

[DawnTX in reply to Ozette]

I did answer someone else and you probably still don’t know what it is so you would have to read about it it’s a part behind the heart with the pulmonary veins and often forgotten about yet very common place for a fib to exist. The procedure uses alcohol instead of heat or cold to ablate It is more aggressive procedure. It was done through my carotid artery, my femoral and my wrist. It has been mentioned on here quite a bit FYI but it is a new procedure from the same hospital as the mini maze. DeBakey is part of Houston Methodist Hospital in Houston Texas my doctor was Dr. Miguel Valderrabano he is the pioneer of the VOM and Dr. Wolf is the amazing pioneer of the mini maze that Mummy Luv had done. I only know about hers from what she has written small world they are both from the same place.

[depotdoug in reply to DawnTX]

VOM is an abreviation for the Vein of Marshall? Think that's the correct acronym.

I had my VOM ablated terminated June 24th.

Is VOM Vein of Marshall?

[Ozette in reply to depotdoug]

Thank you for explaining VOM. I have a long history with A Fib, A Flutter, Atrial tachycardia and Bradycardia, numbers cardioversions, antiarhythmia medications, 4 ablations and a pacemaker and have never heard of VOM. My Electrophysiologist is very thorough, explains everything and draws pictures. So it must not be anything that has been a problem for me.

[depotdoug in reply to Ozette]

No I found out about the unexpected way. My newest EP Dr Parin Patel does it, has been well trained and does VOM procedure because it’s a source of Aflutter and AFIB.

Two of my local Ft Wayne EP’s never ever mentioned the VOM as a cause of arrhythmia. Really and one of my two local EP’s I was telling him about Vein of Marshall ablation(taking it out of action) actually told me, “ Good luck one if he, Dr Patel can find VOM and two he probably can’t do it.” That discussion was right before I was put to sleep for my last Cardioversion June 14th. The correctly trained and skilled up to date state of the art Electrophysiology field ablation approaches are amazing to come into my plagued AFIB A-tachycardia life.

Sometimes it takes a persistent insistent complex complicated persons’ attitude to change doctors.

Like I’m addressing advanced prostate cancer with met’s, S4 as well, since 2019. Cancer meds, BP meds, and Xarelto blood thinner I will be off of Nov 28th if/when my post Watchman LAA TEE shows good results of LAA closure.

[MummyLuv in reply to depotdoug]

you are amazing!

[DawnTX in reply to Ozette]

VOM like the mini maze is just beginning to be used. Both pioneer doctors are part of DeBakey Cardiology In Houston Texas. Most of you know Dr Wolf. . My doctor is Dr Valderrabano. One of his trainees is with with my EP doctor in South FL now which is how I ended up with Dr V as he is known to many.

VOM is not available everywhere. It did fix my flutter immediately. Healing can take up to a year. Mine was done April 26. It now looks as if my AF has also been addressed following a cardioversion 3 weeks ago. Until then my hr has been high 150s and AF a nightmare. I thought it had failed but as of yesterday my hr was 72. Feeling better every day.

Google Vein of Marshall or Dr Miguel Valderrabano for more info. He continues to train doctors even during my surgery. Some of it is very technical fyi. IF you are offered it I suggest you consider it. Vein of Marshall is behind the heart and often forgotten about. If you have a Dr trained in it you have one of the best of the best. I had been upset with my Dr. Not because of success or failure but other reasons. Because of that I was negative about all but no more.

If I continue on the path I am on I am a very happy camper now.

[Ozette in reply to DawnTX]

Thank you for the information and I wish you well in your recovery. If ablation of the VOM was something that could have helped me its to late now as I had an AV Node Ablation last March and a pace maker is now in charge of my heart beat. The what I call “rogue” electrical currents are still being sent to the Atria but not passed to the Ventricles where the beating happens so I no longer feel them and the pacemaker provided a nice steady 70 bpm. After years of anti rhythmic medications with their side effects, several cardio versions and 3 ablations that did little to deter my stubborn and complicated AFib I selected for a better quality of life for however long. When I was too weak and short of breath to even decide what to pack, let alone put it in a suitcase for a trip to Hawaii with my grandsons. I decided I was done with it all and so the AV Node Ablation. I did make the trip to Hawaii three months later and had a fabulous time with 4 lovely young men ages 16, 18, 19 and 20. And I was able to keep up fairly well considering my age.

Having a pacemaker in charge isn’t quite the same as having one’s own well behaved heart in charge but it does give me a quality of life I thought was gone for ever.

A Fib is difficult, and as I understand there is no real cure…..it always gets worse over time. I sincerely sympathize with all who have it. It was especially lonely in the early days when I didn’t know much. And of course if you’ve not had you have no idea.

[DawnTX in reply to Ozette]

VOM is only a couple of years old being used. Quality is what we need. It does not have to get worse. We must help ourselves and we are all different I had 2 ablations in a year and a half then the VOM six months ago. It may be possible to be off meds within a year from the surgery. I never felt lonely. In the states there is a lot of education info now on tv about afib. It is a work in progress and really no different than many other health issues. They all come with issues. Best of luck

[Ozette in reply to DawnTX]

I too am in the US. Off all meds after the AV node ablation. And it’s wonderful! I was diagnosed 14 years ago and there is a great deal more information and support now for sure. Thanks

[DawnTX in reply to Ozette]

lol I just noticed that. I live outside of Houston actually a couple of hours outside

[Ozette in reply to DawnTX]

I’m in Washington State. Previously I lived in Seattle but now 300 miles to the east.

[DawnTX in reply to Ozette]

lol practically neighbors 😊

[DawnTX in reply to DawnTX]

I meant to say the AV node previously had been the option in Florida with a watchmen implant

[bobbyp28 in reply to DawnTX]

curious what VOM means...sorry for my not knowing...

[MummyLuv in reply to bobbyp28]

Vien of Marshall

[bobbyp28 in reply to MummyLuv]

Thx!

[Sweptaway]

so does that mean they will continue with the current procedures and train more EPs to perform those?

[MummyLuv in reply to Sweptaway]

they have a very good EP team who perform catheter ablations at the moment. Super for those in paroxysmal but as we know lower success in stubborn persistent.

They are following pulsefield ablation as a possible option post trial. This could be a route for more stubborn afib as well but we’ll need to wait and see the outcome of the current trials in Europe and US. 🤞🤞

[DawnTX in reply to Sweptaway]

I have no doubt there is more to come to make people happy. Even in the states it’s not available everywhere. Light at the end of the tunnel for everyone regardless of what procedure you need

[CDreamer]

I completely get your frustration but I can also understand the thinking behind the decision because of the investment in time and resources required to train up doctors and during these times when budgets are so stretched it is going to challenge the NHS.

A similar decision was made at the hospital I used to attend when a moratorium was put on the continuation of offering ablations about 7 years ago - all about costs and best use of resources for maximum number of people.

Let us hope that in better times the decision will be reversed.

[MummyLuv in reply to CDreamer]

That’s a good point. I do hope it does reverse, some ch a shame as they were so positive about it 6 months ago.

[CDreamer in reply to MummyLuv]

That is what is so sad now because the decision has been taken out of the hands of surgeons and so it’s no longer clinical decision.

[Jalia]

All about cost in the end then and AF not being life threatening ?!

[MummyLuv in reply to Jalia]

probably

[Daisaku]

Hi, I am really in good shape after the Wolf mini maze. I am almost off all medications and only some few PVCs occasionally., I am here to tell you that The Wolf mini maze is amazing and that Doctor Wolf is amazing. Like you said I wish more surgeons would learn how to do this procedure.

[MummyLuv in reply to Daisaku]

yes he is a very talented man. Glad all is going well for you now 👍👍

[bobbyp28 in reply to Daisaku]

Daisaku. Curious were you able to use medical insurance for the WMM ? Thx!

[saulger]

Sorry to hear this, Alison, and let's hope that it's a temporary setback.

Some have mentioned the cost, but the cost of having a mini-maze privately in Japan is not very high. It is not considerably more than having (us gentlemen) an enlarged prostate treated privately in the UK, as outpatient.

I posit that having two (or more) repeat catheter ablations, to achieve the same success as a mini-maze, would cost the same as a mini-maze, or even more.

If it can be affordable in Japan (high cost of living), why not in the UK?

"Consumer Prices in United Kingdom are 0.38% lower than in Japan (without rent). Consumer Prices Including Rent in United Kingdom are 12.12% higher than in Japan"

numbeo.com/cost-of-living/c...

[CDreamer in reply to saulger]

I think the cost we are talking about is the training of the surgeons, not the cost of the procedure itself and my understanding is that in Japan your health service is very heavily subsidised?

[saulger in reply to CDreamer]

Hello, Suzi. The cost that I mentioned is for a UK resident to have it privately in Japan. Covers all the pre-Op tests and the five day hospital stay in a private room. I was amazed.

Of course, to set up the facilities and the training is another matter. I hope that you are well. Saul

[LadyLawson]

That is a real shame. ERI would be my local EP hospital and it would be reassuring to think that, if I ever needed a mini maze procedure, it would be available there. Glad you’ve managed to get one and hoping you are well. 😊

[MummyLuv in reply to LadyLawson]

hopefully in time one of the Scottish hospitals will lead the way 🤞🤞

[4chickens]

Oh that’s such a shame for the good folk of Scotland, and so disappointing for the surgical team too. When the decision becomes a financial decision about where the funding is best placed it’s an impenetrable wall, but golly so hard in these cash strapped times for the nhs to make. Hopefully they will continue to explore pulse field and revisit mini maze as the evidence grows for its success, and ultimately its cost effectiveness against multiple ablations for stubborn cases

[MummyLuv in reply to 4chickens]

totally agree and hope so 🤞

[Gumbie_Cat]

Really sorry to see this.

[Fryguy]

I totally agree , here in Canada the waits times are horrendous and they only offer ablations. It bothers me very much that there is a procedure proven and also helps people get of medication. But here I am after my ablation with narrowing pulmonary veins and on more medication than I was in before . This just proves to me that we love to support big pharma and not interested in truly giving people the best option out there . I also find the electrophysioligists to be very ignorant and I'm wondering if it's because of my age being younger . Take care out there.

[MummyLuv in reply to Fryguy]

🥲🥲🥲🥲

[Letofeyd in reply to Fryguy]

Which part of Canada are you in? I am in BC, (but a Brit🙂- here 11years,). I am being offered ablation but feel wary and want to explore other options.Are you saying nowhere in Canada can do Mini maze?

I am also young(er) at 53.

[MummyLuv in reply to Letofeyd]

fryguy I am sure will answer so excuse me butting in but there is one surgeon I am aware of doing this in Canada Dr. Gianluigi Bisleri in Ontario. It’s a slightly different method to mine or dr Wolf’s but aiming to do the same thing.

hospitalnews.com/first-mini...

[Fryguy in reply to MummyLuv]

That is great but in Canada we can't jump from province to province like they can in the USA. I am in alberta and a wait time for an ablation is 16 months to 2 years . I have been waiting a year now to see an electrophysioligist.

[MummyLuv in reply to Fryguy]

that’s the same here in the UK, unless you go private I can’t jump from Scotland to England where there are surgeons doing this. I was just sharing who I am aware of in Canada, as far as I know he is the only one

[Fryguy in reply to MummyLuv]

Ty , I appreciate your info . All the best to you...✊️

[Singwell]

Not the surgeons I'd guess. Pure lack of funding. You're doing well though I hope?

[MummyLuv in reply to Singwell]

I’m doing great thanks! I don’t think it is all lack of funding, I know the dr Wolf fans have been challenged on this but genuinely it is also about complexity when doing imimally invasively and the length of time it takes to become proficient. This is what both Me Hunter and my Edinburgh EP said too.

[Singwell in reply to MummyLuv]

So it needs a change of thinking to become more mainstream. It will come I'm sure. Thanks for being a pragmatic and realistic champion of knowledge in this area.

[bobbyp28]

gosh. I can’t imagine living somewhere that it take one year or more just to get an appointment….WOW. GURRR