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Ground breaking new treatment ( or so the article says)

Nannysue1 profile image
47 Replies

I've just heard about a new treatment available on the NHS here in the UK, called elecroporation.

So far 26 patients at the Royal Papworth hospital have had this. Its carried out under general anaesthetic and takes around an hour.

I cant find any info on long term prognosis but will be contacting my EP to discuss this.

Anyone else heard about this?

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Nannysue1 profile image
Nannysue1
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47 Replies
CDreamer profile image
CDreamer

Hi - it’s Electroporation and it was reported in the Daily Mail and it is ablation with a new type of tool which Papworth have been trialling. I believe it is also trialling in Bordeaux in France.

Like many of these things, it may be quite a long time before they become mainstream.

Nannysue1 profile image
Nannysue1 in reply toCDreamer

Yes that's what I read as well.

What I'm wondering is, is it a longterm solution or just a safer and less intrusive option to ablation

It appears that similarly to ablation, a wire is passed up through the groin but the proceedure has less chance to harm any other parts in the heart and it only takes an hour.

Would be great if this was a long term fix and not just like an ablation, which from what I've seen is very hit and miss as to how long you can keep the dreaded AF at bay.

BobD profile image
BobDVolunteer in reply toNannysue1

After nearly twenty years in this game ( the first ablations were done in Bordeaux around early nineties) I have long since stopped hoping for the magic bullet. AF is such a mongrel condition and hearts have such variable construction that I fear there will always be an element of chance.

Most of the new developments over this period have merely made life easier for the operator. Things like cryo ablation speeds the process (but is limited in application), the De vinci robot enabled the EP to avoid the radiation aspect of the process. Sabine Ernst's giant magnets made steering the catheter easier etc . Few if any have improved outcomes long term I'm afraid.

CDreamer profile image
CDreamer in reply toNannysue1

Only time will tell. It IS ablation - just improved sensitivity of the tool used is my understanding, so that there is less possibility of damage when ablating.

Ablations help many people and anything that improves the benefits and lessens the risks in my book is a winner!

To be honest, my view is there will never be a long term cure but methodology to manage the condition will improve. I have never felt the dread of impending AF and I do think fear heightens and exacerbates AF so coming to terms with what is and managing anxiety is top of my agenda to ease AF episodes.

Stay well and enjoy whatever it is you enjoy.

Gumbie_Cat profile image
Gumbie_Cat

I’ve been assuming that this is a different term for “pulsed field ablation’. I know that is done in the Royal Papworth, and I’m sure someone mentioned that Liverpool have started this too.

Just in case you can find more information with that search term.

Nannysue1 profile image
Nannysue1 in reply toGumbie_Cat

I know that its using an electrical current rather than burning or freezing. Also it's used within the gene therapy field for totally different reasons.

Gumbie_Cat profile image
Gumbie_Cat in reply toNannysue1

I always assumed it was another word for this, which seems a similar idea? royalpapworth.nhs.uk/our-ho...

This article also mentions electroporation, I guess that is what the pulsed field is doing to the heart cells, while protecting other structures. It does sound good - though I’m still hoping for my cryoablation quite soon.

pubmed.ncbi.nlm.nih.gov/332...

Nannysue1 profile image
Nannysue1 in reply toGumbie_Cat

Thanks for those interesting links. Yes it does sound promising and looks like it may supersede current methods for ablation.

As it's still new, there's no real data on length of relief from AF is there.

Gumbie_Cat profile image
Gumbie_Cat in reply toNannysue1

Not really - just a safer way of doing the ablation

Nannysue1 profile image
Nannysue1 in reply toGumbie_Cat

Well safer and less time for procedure must be a major plus'

I personally dont go along with the "nothing will ever cure AF" theory.

I think that in time , firstly the methods used to help AF ,will improve, as with this method and eventually they will be able to repair damaged hearts.

Possibly it will involve Car-T cell and gene therapies, which are making major changes to all sorts, including cancers, vaccines etc.

Wouldnt mind betting that in the future, the current methods used may well be considered barbaric, as with most things, once modern technologies take over.

Doubt it will be in my lifetime but who knows.

Just my opinion.

Jpot34 profile image
Jpot34

I know some of you have heard of the Wolf Mini-maze Procedure. Do you think it's a scam????? My research tells me the issue for vagal AFIB is nerves on the outside of the heart, or possibly in the left atrial appendage, not the inside (ablation). Burning nerves on the inside kills heart muscle cells that are gone forever. Doesn't make sense to me especially when a lot of people say it doesn't work longer term.

MummyLuv profile image
MummyLuv in reply toJpot34

mini maze a scam? No it’s not there are a number of different techniques for mini maze/convergent procedures. Plenty of medical research. It’s not for everyone but for some esp those in persistent it’s a more effective option. I am nearly 6 months post mini maze in the U.K., so far so good, no afib.

Nannysue1 profile image
Nannysue1 in reply toMummyLuv

I was waiting for you to come along and answer that 😘

MummyLuv profile image
MummyLuv in reply toNannysue1

😂😂😂 to be honest I went through that whole line of thinking myself at the start, is it too good to be true.

Poochmom profile image
Poochmom in reply toJpot34

Nope, not a scam at all. I had it done in June this year and it is a long term miracle solution in my book where an rf clamp is wrapped around the outside of the heart and ablates a complete line around the heart and to the pulmonary veins. 93% success rate with multiple people out 18 years and no AFib. I was having episodes every 5 days lasting hours. I have not had one episode since surgery 4 months ago. I am so grateful to Dr Wolf and the Mini maze for giving me my life back. I no longer worry about AF at all and I can eat anything I want without triggering an attack. Also, my stomach problems have gone away since the surgery too. So no, not a scam!!!

Jpot34 profile image
Jpot34 in reply toPoochmom

Poochmom, did they force you to have a double nostril nasal pcr test? What pre-tests did you have? Contrast (iodine dye) ct scan or any other tests? How long were you in the hospital including the surgery day? Were you in much pain after surgery? Would love your insight! I'm so happy for you!!

Poochmom profile image
Poochmom in reply toJpot34

I had blood work, chest X-ray and ct scan with contrast pre op. Stopped Eliquis 3 days prior and never have to take again because my LAA is clamped and tested via TEE.

I was in hospital 4 days including surgery day because some pain meds they gave me lowered my hr to 40. They had disconnected the temporary pacemaker from the wire inserted during surgery as a precaution. Otherwise it would have been 3 day hospital stay. Day of surgery had back pain pretty bad due to chest tubes inserted to make sure all the air got out from surgery. Those removed the next morning. Minimal pain after that. When I went home, I just used Tylenol but didn’t need much of it. I am not on any AFib meds now. Incision sites were sore but not painful. I also had a Linq recorder inserted so Dr Wolf can monitor my heart rhythm for 4-5 years 24/7. He is an excellent surgeon and a doctors doctor. Best experience I’ve ever had in a hospital. I haven’t had any ablations though and flutter is a side effect of ablation. Some have aflutter after surgery for a while during blanking period of six months. There is a Facebook group where you can read others experiences and you tube videos where Dr Wolf answers questions and explains the surgery.

Poochmom profile image
Poochmom in reply toJpot34

I had no nostril Oct test and they didn’t force me to do anything. Doc needs some of the tests pre op so he knows what he’s dealing with.

Poochmom profile image
Poochmom in reply toPoochmom

nostrum pcr

Jpot34 profile image
Jpot34 in reply toPoochmom

Poochmom, you must be covid vaccinated. I'm not so they must be forcing me to take the nostril pcr test. Thank you so much for the information!!!! Believe it or not - my Wolf Mini-maze procedure is scheduled for the 16th of this month. Just wanted to see your personal experience. Only the Lord knows my results. I will pray heavily.

Poochmom profile image
Poochmom in reply toJpot34

yay for you! You are correct. I had to have a Covid test. I didn’t realize what you meant by double nostril pcr test.

Jpot34 profile image
Jpot34 in reply toPoochmom

Thank you Poochmom! I wish you the best also! Any symptoms from the nose test? Did they go shallow into both nostrils or way deep all the way to the back of your nose? Did they test one nostril or both? I appreciate this conversation!!!!

Poochmom profile image
Poochmom in reply toJpot34

it was shallow. I had to deep one when Covid first started. It was nothing like that.

Poochmom profile image
Poochmom in reply toJpot34

they tested both nostrils. I had no symptoms from it at all. That place is the best you will ever experience. I was amazed.

Jpot34 profile image
Jpot34 in reply toPoochmom

I'm just reading/hearing bad things about the swabs being contaminated. That's why I asked. I hope they treat me as well as they did you! I have surgery on Wed. - hoping to be released on Thurs. with the Lord's blessing. Where are you from? I'm from central Illinois unfortunately!

Poochmom profile image
Poochmom in reply toJpot34

I’m from Northern California. Honestly, you have nothing to worry about. That hospital is the best in the country. They do things right and if there was any contaminated swabbing going on there it would be rectified like yesterday. I’m excited for you!

Jpot34 profile image
Jpot34 in reply toPoochmom

It goes much deeper than that. Research it on a FREE search engine please. The information is out there from thousands of doctors whom are trying to save lives as we speak.

Poochmom profile image
Poochmom in reply toJpot34

I wouldn’t put too much hope in being released on Thursday. I would say possibly Friday and most likely by Saturday at the latest.

Jpot34 profile image
Jpot34 in reply toPoochmom

Kimberly hinted to me if all goes well - get released Friday (3 days). I'm pretty healthy, slightly overweight, and no pacemaker/previous ablations. I hope and pray heading home Friday or Saturday. I see we both live in socialistic states. Would love to move to Wyoming or Montana. I will not get the Link as I'll have a Kardia to e-mail them if I have post operative issues. Did you have any symptoms/issues the 3 months after surgery? AFIB, Flutter, or Tachycardia?

Poochmom profile image
Poochmom in reply toJpot34

I have had no issues at 3 months. Yes, Friday is realistic for release I think. Yes I live in a communist state and wish I could move also. But not possible at the moment. Again, good luck on Wednesday and just go with the flow. Remember it’s a journey not a sprint.

DawnTX profile image
DawnTX in reply toJpot34

it seems like each hospital has their own way of doing this. I had my initial two but no boosters I refuse. In Florida they would come to your car and it was a quick one not the deep one and only one nostril. Everything I’ve had done since October was also the shallow one. Houston Methodist, you have to get the deep one that takes several days to get results. All the others were instant. I just had a nuclear stress test last week and it was that shallow but both nostrils so go figure.

Poochmom profile image
Poochmom in reply toJpot34

I’ll be praying for you also! You will do great. It was a wonderful experience for me. I’ll pray you have the same!!!🙏

Poochmom profile image
Poochmom in reply toJpot34

just so you know, there is another doctor who trained under Dr Wolf, Dr Ohtsuka in Japan who DDS the exact same mini maze with the same results.

Jmbrph profile image
Jmbrph

of course…it’s the new PULSE FIELD ABLATION. I had it a year ago, first person getting it, at Mayo in a clinical trial. Waiting for FDA to approve. It will be a whole new paradigm shift in ablation!

Nannysue1 profile image
Nannysue1 in reply toJmbrph

Thats good to

MikeThePike profile image
MikeThePike in reply toJmbrph

That's great. What did you have if for? Afib, PVCs? How did you feel afterwards? Did it cure you or make things any better?

Jmbrph profile image
Jmbrph in reply toMikeThePike

Had pulse field ablation after 8 years of AFib, got tired of eR visit s and cardio versions. Best thing ever. Now get a few ectopics (PACs) that USED to turn into AFib but no more.

Jajarunner profile image
Jajarunner

ahajournals.org/doi/full/10...

heres a 2020 studyinto it

Jmbrph profile image
Jmbrph

I had AFib for 8 years and tired of ER visits & cardio versions. No problems since, only ectopics (PACs) that USED to go into AFib but now don’t.

MikeThePike profile image
MikeThePike in reply toJmbrph

Thanks for responding. I'm glad it's working out for you. PFA is an evolving technology that is continuously being improved. A LOT of research is currently going on. New catheter designs will undoubtedly make the process even more effective. I can't deny that I'm quite excited at seeing advances in ablation technology and what the future will bring. Artificial intelligence? Nanotechnology? Who knows?

Jmbrph profile image
Jmbrph in reply toMikeThePike

My EP at Mayo, Dr Peter Noseworthy, is a pioneer in artificial intelligence. He has the cheap EKG programmed to detect all kinds of possible cardiac problems. He is amazing! (His dad, John Noseworthy, was the last CEO of Mayo and amazing, too,) Good genetics!

Karendeena profile image
Karendeena

yes, I read it in the mail yesterday, I too will be asking my EP when I next see him as he is involved in new innovations

Funkygirli profile image
Funkygirli

I had a PFA on September 19th, am off Flecainide ever since and still in NSR… the procedure was fast and painless, I hope it lasts a long time!!!

Nannysue1 profile image
Nannysue1 in reply toFunkygirli

I hope it lasts for you too.

MikeThePike profile image
MikeThePike in reply toFunkygirli

Hey that's great news. Long may it last. Please keep us updated on your progress. Thanks.

TracyAdmin profile image
TracyAdminPartner

Hi there, you may find the newsletter helpful on the AF Association webpage myemail.constantcontact.com...

Nannysue1 profile image
Nannysue1

Hi Tracy, thanks for this.

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