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Minimally invasive Surgical Ablation carried out in UK, preparing for surgery

MummyLuv profile image
40 Replies

Surgical ablation is not used much here in the UK unless open heart surgery is being carried out anyway. In other countries - the Netherlands, US and Japan it is a first line treatment for persistent afib (and actually some paroxysmal too) and carried out by keyhole/minimally invasively.

I am 5 plus years in persistent afib

I am 2 weeks from having a surgical ablation including clamping the left appendage (to reduce stroke risk) here in the UK by keyhole and for those interested I will post regular updates.

I started the dreaded Amiodarone 3 weeks ago and will continue to take this for a couple of months post procedure to help NSR hold.

The success rate at 12 months is 85%, occasionally a touch up cryoablation is required and sometimes a cardioversion.

So countdown begins…..

#surgicalablation #minimaze

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MummyLuv
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40 Replies
saulger profile image
saulger

Good luck Alison. A poster from the USA sent me this link, not knowing that we share in your research. Much good luck and great success. Saul

MummyLuv profile image
MummyLuv in reply tosaulger

Thank you Saul! Nervous and excited in equal measure. I hope I have the same success as the WMM. It sure is a family 💕

saulger profile image
saulger in reply toMummyLuv

Do not worry. You really are in the best UK surgeons' hands, and you know the ins and outs of the healing process better than most.85% success rate will include you and you are very young to get your NSR life back and enjoy it to the full. We are all here rooting for you. saul

MummyLuv profile image
MummyLuv in reply tosaulger

I am expecting a tricky first three weeks. Love that warts and all is shared on our WMM group. Looking forward to being out the other side 🥰

Poochmom profile image
Poochmom in reply toMummyLuv

I’m so happy for you. Glad to hear they clamp the LAA. Prayers for success and painless recovery. Please keep us posted. One member of your WMM family! 💕

MummyLuv profile image
MummyLuv in reply toPoochmom

Ah no need to answer my other question about if you have had surgical ablation, I see you are a WMM member :)

HiloHairy profile image
HiloHairy in reply tosaulger

How do I find the link?

saulger profile image
saulger in reply toHiloHairy

Hello HiloHairy.

I message a fellow AFA forum member on various techniques how to exercise whilst avoiding episodes, and we also discussed the Wolf Mini Maze.

He saw this page with MummyLuv's post, before I did , and sent me the link to here, so the story ends here...

I joined a Facebook Group called "Wolf Mini Maze", where I read Alison's story and followed her on the AFA site also:

facebook.com/groups/4129396...

It is free to join and all AF sufferers and their family and friends are warmly welcomed.

All the best, Saul

CDreamer profile image
CDreamer

Hi and good luck Alison - where are you having it done?

I remember at Patient’s Day a few year’s ago a team from either Imperial or Barts??? can’t remember which, reported on their trial of surgical mini-maze, explained the procedure and who would be suitable candidates and purely from memory, I understood it was very successful for those for whom a catheter ablation would not be advised because their areas which needed to be ablated were in a positions which were inaccessible by catheter ablations.

One forum member - Bambi had a similar procedure done in the US and reports excellent outcome.

I look forward to reading your updates.

MummyLuv profile image
MummyLuv in reply toCDreamer

Thank you! I know Bambi from the Wolf mini maze group. It was Wolf mini maze and its success that led me to research surgical ablation. In fact at one point I was booked in for the procedure with Dr Wolf in Houston before I found that there is an experienced surgeon here in the U.K. (a very kind person in this group shared his name with me). The surgeon practices in the NHS in Sheffield, he has just started private work and so I am having done privately in London.

Poochmom profile image
Poochmom in reply toCDreamer

The main thing to remember regarding Rf or cryo ablation and the surgical procedure is the ablation punctures the septum and ablates the inside of the heart. The theory behind the surgical ablation is that the problem is not on the inside of the heart, it is a nerve issue with the vagus nerve and the surgical procedure ablates around the outside of the heart. And it is a full line around the heart and tested to make sure that there is no electrical impulses left to cause the AFib. Additionally, the left atrial appendage is clamped so there is no longer a need for blood thinners.

MummyLuv profile image
MummyLuv in reply toPoochmom

Spot on. Have you had the procedure Poochmom? Be interested in your experience? :)

Poochmom profile image
Poochmom in reply toMummyLuv

Hi MummyLuv!! No I have not had the procedure yet. I am scheduled for June 27. It can’t come soon enough!!! Prayers and good luck on your procedure. It’s so exciting that there is an option for this across the pond. It hurt my heart that the people suffering over in the UK didn’t have access to this wonderful solution. Please share your recovery process with us!!! I am Marsha on the WMM group. 🤗

MummyLuv profile image
MummyLuv in reply toPoochmom

Hey Marsha, not long now for you either! I’m Alison x

sassy59 profile image
sassy59

Hope all goes well for you and look forward to updates. Good luck xxx

MummyLuv profile image
MummyLuv in reply tosassy59

Thank you

Exciting news Alison, I hope you don’t mind me saying that from your photograph, you look much younger than most with persistent AF and I’m guessing you might be a young mum too with so much to look forward to. Although little is known about the procedure here in the UK, it does receive excellent reports elsewhere so it will be interesting to hear from you about your progress. If it is being done at Barts, you couldn’t be in better hands. Every best wish for a successful outcome………

MummyLuv profile image
MummyLuv in reply to

I am a mum and young for persistent afib for sure. I am 50. I have two disabled kids who need me every day and so I would seriously love to be rid of the afib monster. Thank you for your best wishes :)

MummyLuv profile image
MummyLuv in reply toMummyLuv

Oh should have said, being done at the Harley Street Clinic by the keyholeheartclinic’s surgeons thekeyholeheartclinic.com. Steven Hunter and Inderpaul Birdi. Both also work in the NHS.

meadfoot profile image
meadfoot

Good luck with your procedure. I assume its Steven Hunter from Sheffield Teaching Hospitals Foundation Trust doing your op. Local lad raised in South Yorkshire, very well regarded and respected. You are in safe hands. Best wishes.

MummyLuv profile image
MummyLuv in reply tomeadfoot

Wonderful to hear 🥰

Jajarunner profile image
Jajarunner

I hope it works for you. I've had three failed ablations in the last 23 months so maybe my future may be via this route. Thank you for sharing xx

MummyLuv profile image
MummyLuv in reply toJajarunner

Sounds like an option for you too :) Are you U.K. or US. US have the pioneer in Dr Wolf

Jajarunner profile image
Jajarunner in reply toMummyLuv

UK. I hope that I can avoid all ops/procedures for a few years after those three so close together! Then see how the new options are shaping up. 🤞🤞🤞🤞

theohappy profile image
theohappy

Hello to you and the very best results on your upcoming surgery. You call it a "surgical ablation" but also that it is similar to that of the WMM. I assume it is being done on the outside of your heart and not the inside like other ablations? Is there anything you know of that is different in protocol than the WMM? If it is truly similar this could be good news for others in this forum seeking options who live in the UK.

MummyLuv profile image
MummyLuv

Hello theohappy yes it is the outside of the heart. This ablation and the WMM both ablate the left and right PVs, they both clamp the left appendage. Dr Wolf ablates the ganglionic plexi, this procedure does not. This procedure does the cox maze IV lesion on the back of the heart Dr Wolf does not. Dr Wolf believes that afib is a nerve issue, Dr Hunter believes that the Cox IV lesions are more effective. So 2 of the 3 areas carried out are the same.

cat133 profile image
cat133

Thank you Alison for updating me. I have often wondered what became of you since first reading on here that you were booked with Dr Wolf in Houston as I too exhausted all efforts to contact the procedure here in UK. Reactions at private EP appointments were fruitless and dismissive. I have followed WMM site and became really upset on reading about all their success stories under Dr Wolf and there being no availability to the procedure in UK, as I desperately do not want to become drug dependent. I greatly admire how you have overcome all these negativities here in UK and what you have have personally achieved in sourcing help. It would not have been easy. I wish you every success and thank you for raising awareness in pioneering a similar procedure to WMM here in UK as there are presently very limited options with the one, routinely given drugs suffices all approach. I was seriously thinking of selling my home to fund the procedure with Dr Wolf. Hopefully, thanks to people like yourself, it may one day become a more accessible and affordable option than Houston. My best wishes for a successful outcome for you and your loved ones.

MummyLuv profile image
MummyLuv

Thank you for the best wishes, it’s appreciated! I do hope for the same level of success as the WMM, the stats are very similar 🤞

Things are slowly changing here in the UK. This is a research paper from the Royal Brompton which found surgical ablation to be more effective for persistent afib, njl-admin.nihr.ac.uk/docume...

The Doc doing mine works in Sheffield NHS and has just started to do private work as he said he wants more people to be able to access this in the UK.

Cost wise from the consultations I had the Netherlands, Switzerland/Germany were about £40k. I don’t know the cost of the UK procedure yet but expect it will be about the same, significantly less than the WMM.

Feel free to PM me.

I will share my journey here just like the WMM group do in the US which will hopefully help others thinking about their options (like yourself) here in the UK.

jeanjeannie50 profile image
jeanjeannie50

Sending you my best wishes. I will be eager to hear how it all went and how well you recover.

Jean

MummyLuv profile image
MummyLuv in reply tojeanjeannie50

Thank you

mjames1 profile image
mjames1

Good luck with your procedure. Sounds like a great decision given your persistent afib.

However, as to similar minimally invasive surgery being "first line" in the US for persistent and sometimes Paroxysmal afib -- while some center may offer surgical for persistent, right now that is not the norm in the US. And I doubt it ever will be for Paroxysmal, with newer, less invasive and potentially more effective catheter based ablation procedures being developed such as Pulse Field Ablation.

There is also a newer "Hybrid" technique being offered for persistent at some US Centers that does both the inside and the outside during the same operation, where an ep performs the catheter based PV and the surgeon does the outside.

Jim

MummyLuv profile image
MummyLuv

Thanks for clarifying :) I certainly found a lot more centres offering hybrid and surgical approaches esp for persistent in the US than we have here in the UK where there is virtually nothing. It’s great to have your local insight.

mjames1 profile image
mjames1 in reply toMummyLuv

Here, in the US, it probably comes down to whether the center you go to offers mini maze or hybrid. Some do. Many don't.

Also, if you see an ep, they will tend to steer you to what they do, which is a catheter based ablation, not to a surgeon who does the mini maze. The exception might be if they don't think they can help you, or if their center offers the hybrid, but that's still in a minority.

I asked my ep about about the hybrid and he said something to the effect, "don't think you need that". The implication being that a less invasive catheter based PVI should be my first choice. However, my longest afib episode was only 7-8 days, while in your case it sounds like long-lasting persistent which would be harder to get good results with catheter based only.

They are now starting, or about to start trials here, for Pulse Field Ablation for persistent afib in the US. My understanding is that it is now available in Europe out of trial? From what I understand it is less invasive than either an rf or cryo catheter ablation, with slightly better results. 80% success is what I hear anecdotally for paroxysmal, not sure if they have numbers yet for persistent.

Jim

MummyLuv profile image
MummyLuv

That’s right, pulse field has been driven from the Bordeaux clinic in France who were behind the original catheter ablation technique I believe. I considered going to them, they get very good results but as you say as I am long term persistent the results were still better by surgery, I really hope I am in those high positive statistics.

Lilypocket profile image
Lilypocket

I wish you all the best! Your post is extremely interesting and has provoked many informative replies - I have learnt a lot! I shall be very interested in the outcome of your procedure and will keep an eye out for your posts.

🙂

MummyLuv profile image
MummyLuv in reply toLilypocket

Thank you Lilypocket

Mrsvemb profile image
Mrsvemb

I don’t know how I missed this post, but found it from your response in todays post.

I am very interested in learning all that I can about your surgery and will be watching closely for updates.

Am I right in thinking that your surgery will be performed at the Harley Street Clinic? I know it well (my late husband had three ops there) and I would be looking to get it done privately.

My very best wishes to you for the surgery and wishing you a speedy recovery. You will be very well looked after in the Harley Street Clinic.

Val

MummyLuv profile image
MummyLuv in reply toMrsvemb

Yes Val, Harley Street clinic booked through the keyholeheartclinic. Thank you for sharing your personal experience of the clinic, that is comforting. I am sorry to read ‘late’ husband though x

Mrsvemb profile image
Mrsvemb

Thank you for your kind words. Just to be clear my husband didn’t have cardiac surgery. It was for cancer that spread to his lungs 3 times.

The care he received in the Harley Street Clinic was excellent, so you will be in good hands.

Val

MummyLuv profile image
MummyLuv in reply toMrsvemb

How very sad. Thank you re Harley Street, I’ve not been before as I live in scotland but an excellent care rating is hard to come by!

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