Atrial Fibulation from cancer treatment not standard Afib. Update post EP Consultation

[waveylines]

Hello Everyone so as promised an update. I saw my EP on Friday. He explained that Afib usually occurs around certain sites in the left Atrium (? Is that the correct term) and these are the sites they target when doing an Ablation. He said when we do cryo we can't see where the electrical impulses are cryo just target standard known sites. He drew a pretty picture. Can't do it on here. But because my Afib is caused by cancer treatment am likely to have rogue impulses not in the standard spots they treat. This means he has to go back & use pattern block to map them and do each rogue impulse. However he is likely to miss some and so he will have to do a third Ablation or even fourth! Ouch! Then because of my intolerance of anti coagulation, they would need to do another op to cut the flap where blood tends to pool in Afib. Therefore he recommended a Mini Maze & will refer me to Mr Hunter.

He insisted there isn't a long wait for my type of Mini Maze: 2months to see him and 6 months for the op. Am not sure I believe that but I hope he is right. He told me he knows Mr Hunter and works with him.

Something else he said that I found very helpful was that anticoagulation studies are based on population numbers, not individuals. He thought it was highly likely that I needed a lower dose of anti coag & thought what my GP did lowering it to 2.5mg was right but because research isn't their currently he cant say definitvely that it lowers my stroke risk as much as a full dose would. Research is going on looking at this but will be another 5 years. Hence, the cutting of the flap during the Mini Maze.

He also told me that actually, because I would only have one procedure, the risk to me was lower doing a Mini Maze than doing a series of Ablations. He also told me that the success rate of a Mini Maze on P-Afib is very high. Lastl, he confirmed that Verapamil does causekidneyydamage, andd the longer I stay onit, the bigger the risk becomes of this happening. Ive already been on it 3years. So far am told my kidney function is excellant but who knows what is going on insiduously. Other drug options he told me have bigger side effects....and he said we only use them when all else fails. Fair enough.

All in all a very useful consultation

I did post some of this as it came up in another post but as I said I would post an update after my consultation I am doing so now. Forgive me for those who have read the other post!

Thanks for reading and for all the support. It's much appreciated.

[mjames1]

First, a lot of this is beyond my pay grade, but overall plan and reasoning seem sound.

That said, the the part about cryoablation is misleading. The "known sites" being referred to are the pulmonary vein, hence the term PVI (pulmonary vein isolation) ablation, which is the standard.

The misconception is that when you get a cryoablation, all they ablate is the pulmonary vein. A good ep who uses cryo, will first ablate the pulmonary vein with the cryo balloon, then do the mapping as mentioned, and then use rf frequency to ablate any rogue impulses, be it in the right atrium such as typical flutter or something else, or in the left atrium such as atypical flutter or something else. This misconception is repeated often here and it usually originates with ep's who do not perform cryo themselves

So is this a hybrid procedure (involving an ep and a surgeon) or just a standard mini maze? I ask because you mention an ep, however ep's do not do surgeries like mini maze. Surgeons do. And surgeons do not map or ablate with catheters. Ep's do.

Jim

[waveylines in reply to mjames1]

Thanks James but he would perform the Ablations, is very experienced & was sat in his surgical gown. He was very clear with what he could and could not do. And he drew me the sites they hit with cryo. He talked about mapping to me but was also clear that his honest opinion was that he (not someone else) would have to go in several times. I was referred to him in the first place to look at Ablation.

In my post above I talk about being referred to Mr Hunter who is a surgeon. There was no mention of the EP being involved. Simply that he knows him and does work with him - I'm guessing on other things. Hope that clarifies it further

[mjames1 in reply to waveylines]

So, Dr. Hunter, a surgeon, would be doing your mini maze. That makes sense. Ep's do not perform a mini maze.

Jim

[waveylines in reply to mjames1]

Indeed! 😊

[waveylines in reply to mjames1]

I know!

[Buffafly in reply to mjames1]

I think you may be describing what happens in the USA. Here it is usual to perform a cryoablation only as a first step followed by RF if needed. Some EPs only perform Cryo and if it is considered that RF is needed you are referred to an EP experienced in RF ablation.

[mjames1 in reply to Buffafly]

I discussed my situation with a UK ep nurse. She was clear that the ep would do a cryo PVI and then "clean up" both left and right atrium with RF, if needed, after mapping, an in fact perform an empirical typical aflutter ablation at the same time with RF, based on my history. But definitely it's a good idea to ask the ep prior to the ablation, how they will deal with any rogue signals other than from the pulmonary vein. This is a question that should not only be addressed to ep's using cryo for the pvi, but also to ep's using rf for the pvi. Again, a big misunderstanding here about cryoablation.

Jim

[Threecats in reply to mjames1]

I must say Jim, when the NHS Ep I saw was discussing the option of a cryoablation, he was clear that it would be a pvi only first time round - I imagine for speed. If it was required, then further rf “touch-up” ablations would be done. That was one of the things that put me off the procedure to be honest, as I didn’t fancy multiple doses of anaesthetic and he was insistent that ga would be used for each procedure.

[BobD Volunteer]

Rather sadly another member who was waiting for Dr Hunter to perform a mini maze has had her procedure cancelled a number of times and has now been told there is no foreseable time set aside for this procedure. Sorry to be the bearer of such bad news but better not to get too excited.

[waveylines in reply to BobD]

No dont think you are Bob. The other person needed a more combined procedure not the type of Mini Maze am talking about. Thankfully. They are not cancelled you will be pleased to hear. 😊😊 well when I say not cancelled.....no more than other ops that are cancelled.

[MummyLuv in reply to waveylines]

spot on, the procedure that was cancelled was a hybrid. It needs the theatre team (mini maze) and catheter lab/EP at the same time. Hence why it has been cancelled. Although it is frustrating it is so far less than 9 months wait which is also sadly regularly heard of for catheter ablations.

There are a few folk on her now on the list for the stand alone minimaze on the NHS with Mr Hunter. Wishing you well waveylines! You have a very progressive EP who understands the pros and cons of mini maze, many don’t.

[waveylines in reply to MummyLuv]

Thankyou MummyLuv. I thought that. He spent quite a long time taking me through it all which late Friday afternoon was so much appreciated. I'm basically not straightforward he said as cardiotoxcity Afib is different. So I will bide me time. I waited nearly 2 years for reconstructive surgery so am used to the waits. Mostly important that I have a great surgeon doing it....which I do. He spoke highly of Mr Hunter and I know you went to him too.

[MummyLuv in reply to waveylines]

I did a ton of research and had consultations all round the world (thank goodness for teams/zoom and digital medical records) and my final decision was between Dr Wolf and Mr Hunter. Neither have had any deaths and both have done a lot of these surgeries. I chose Mr Hunter ultimately as his technique for me was better for persistent afib. I realise I am very fortunate I was able to choose my surgeon and access the mini maze, in my opinion you will be in the best hands!

I didn’t know this until the day of my surgery but after my mini maze he went on to do a mini maze on a London cardiologist in the afternoon. Gave me a bit of comfort in the hospital for sure when a fellow cardiologist chooses him for their procedure! X

[waveylines in reply to MummyLuv]

Oh wow yes that would be very reassuring. Well my current path needs to change....I've read the research on cardiotoxicity it's not great.....so this is a Ray of sunshine in a gloomy place. Thankyou for sharing this MummyLuv it means a lot to me.

[JerrysGirl3 in reply to MummyLuv]

just out of curiosity why are people calling him "Mr" Hunter and not "Dr" Hunter?

[waveylines in reply to JerrysGirl3]

That's probably my error JerryGirl3. Oops Sorry.

[4chickens in reply to JerrysGirl3]

In the uk we have this strange practice of spending years becoming a Dr only to drop it back to Mr, Mrs, Ms or Miss when they become a surgeon.

[Gumbie_Cat in reply to 4chickens]

I used to work in a medical library. Back in the 1980s we were so careful about checking before sending any correspondence. I think the only exception is obstetrics, where they keep the ‘Dr’ even when they’re surgeons.

[4chickens in reply to Gumbie_Cat]

wow never knew about obstetrics. Then throw a few professors into the mix. We certainly don’t make it easy for folks to understand our strange ways do we. 🤣

[Gumbie_Cat in reply to 4chickens]

I’ve done a quick search and could be wrong there. I was remembering a book about a particular obstetric consultant that I read years back. She was accused of being less qualified, with the title ‘Dr’, whereas it was the tradition in Obstetrics. I think it might have changed. Sorry!

[4chickens in reply to Gumbie_Cat]

I’ve also done a quick search and apparently many years ago Drs had to be qualified although could buy the qualifications but anyone could be a surgeon and hack pieces of folks off. Glad it’s changed.

[Gumbie_Cat in reply to 4chickens]

I saw that! Such a weird reason for the titles. We are lucky to live when we do, even with the underfunding, waiting lists and rotten management decisions. Keeping fingers crossed that you can at least get your operation plus ablation done separately.

[waveylines in reply to Gumbie_Cat]

Wasn't their a Consultant psychiatrist charged with false documents who had worked fir the NHS for years....think it was something like 20 years. Recently found guilty in court & sent to prison. All because the NHS Powers to be didnt check her qualifications properly.....took the paper docs at face value. Apparently, we'll the NHS say so they can cross-check documents with the relevant bodies.... So shocking!!!

[4chickens in reply to waveylines]

there certainly was worked for the same trust as me for a while via a locum agency.

[Gumbie_Cat in reply to waveylines]

I remember that!

[JerrysGirl3 in reply to 4chickens]

how strange !!!!

[waveylines in reply to JerrysGirl3]

Hi JerrysGirl3 your comment had me thinking about titles. Turns out Steve Hunter is 'Mr Hunter' because he is a consultant but also a doctor. phin.org.uk/profiles/consul...

[Florence-Nightingale in reply to JerrysGirl3]

if he’s a surgeon they are all referred to as Mr.

[waveylines in reply to Florence-Nightingale]

Thanks Florence -Nightingale. I was just checking because there was a comment on this post about why we were calling him Mr Hunter & not Doctor. But he is Consultant abd therefore the Doctor is dropped & Mr etc is used. I don't know if this is the case for all surgeons.

[Florence-Nightingale in reply to waveylines]

I think all surgeons are Mr.

[4chickens in reply to BobD]

The mini maze surgeries aren’t being cancelled just the hybrids that require a surgeon and surgical team plus an EP and team apparent about 20 folk in total.

[mjames1]

Sorry I upset you, but I agreed with your treatment plan. That includes your mini maze and closing off your "flap" instead of AC's. The first line of my reply was: First, a lot of this is beyond my pay grade, but overall plan and reasoning seem sound.

My comments on cryo ablation were not about your treatment, but about cryo ablation in general, where there are some misconceptions here. Hope this clarifies things and have a good day.

Jim

[waveylines in reply to mjames1]

Thankyou Jim. That wasn't clear as it was all in the same message.My EP would've done mop ups of rogue ones in another session with mapping. There were 3 veins he would've blasted in the first Ablation. Me I certainly am not expert on this. Complete novice.

It's a bit weird though you saying you agreed with my treatment plan. It sounds like you knew what's what despite you saying it's beyond your pay grade. Its not why I posted....though I get the sentiment yo meant by it. Thank you.

[Keano99 in reply to waveylines]

perhaps you should read your emails properly then, before trapping off against someone who’s kindly offered you his experience/viewpoint in good faith.

[waveylines in reply to Keano99]

Not following you Keano99....

[Gumbie_Cat]

That sounds like a really good consultation - with your EP taking everything into account and referring you on to the best treatment. Hoping that you get sorted with the mini-maze quickly!

[waveylines in reply to Gumbie_Cat]

Thank you so much Gumbie Cat. 🤞🤞

[Threecats]

I’m very pleased to hear you had such a positive consultation Wavey. Your EPs comment about anticoagulation is interesting, too. I wish you all the best going forward with your consultation with Mr Hunter.

[waveylines in reply to Threecats]

Thank you so much Threecats. Here's hoping Mr Hunter can help me. 🤞🤞

[Threecats in reply to waveylines]

Keeping everything crossed for you. It certainly sounds like if any one can, he can!

[CDreamer]

Sounds an outstanding consult and very interesting comments. You were spot on with your earlier assumptions then about AF caused by cancer treatment being A Typical.

Sounds as though you now have a plan and do hope it all goes well and in a timely fashion.

Take cae

[waveylines in reply to CDreamer]

Thanks CDreamer. It was my EP who told me my AF is Atypical during a phone consultation. Today he repeated it & wasn't keen to do Ablation. It was also nice to meet him face to face after 3 yrs of phone calls 😊 very nice caring man.

[Hidden]

Hiya,

Have you considered the 'Watchman' device approach to problem solving. Forgive me for intruding I am not clinically wise compared to many on here but I always regarded this as an option to A/c's for some people.

[waveylines in reply to Hidden]

Thankyou Carneuny.

[fairyfeathers]

You have a lot going on so I wish you well going forward. Sending a hug x

[waveylines in reply to fairyfeathers]

Thanks Fairyfeathers. 😊

[Declin]

That was a very interesting update waterlines. Thanks for posting, and very best wishes for your ongoing treatment👍

[waveylines in reply to Declin]

Thankyou Declin. Will see what surgeon says. 🤞

[Rubymurray25]

You sound so positive with you update and for me positivity is half the battle! Wishing you all the best with your treatment and look forward to a further positive update.

[waveylines in reply to Rubymurray25]

Thankyou Rubymurray for your very kind words. I'm a firm believer in out of misfortune comes Fortune.....hopefully this is my fortune. 😊

[Mrsvemb]

Sounds like you had a very good and productive consultation with your EP. In my opinion, a mini maze is a much better option than multiple ablations, plus the outcome is much better, not having to take anticoagulants and hopefully any other AF meds that you are currently taking.

The waiting time will soon pass.

[waveylines in reply to Mrsvemb]

Thankyou Mrsvemb for your encouragement. I've had a number of ops in recent years so am used to waiting......Worth it in the long run I hope.

[Singwell]

This reads like good news and an intelligent EP. So glad you're getting this care.

[waveylines in reply to Singwell]

Thankyou Singwell. I am incredibly lucky to have these amazing doctors in my locality. Who would've thought it? I will wait patiently & hope Mr Hunter can sort me out.

[Anon789]

your ep sounds brilliant, can I ask who/where he is? Thanks!

[waveylines in reply to Anon789]

Hello Anon789 He is in Sheffield. Very kind & spent sometime going through everything with me. Dr Kirkwood, very experienced EP.

[Mumursa]

That’s great news. Your EP sounds really good and very constructive about getting you the treatment you need. I hope you don’t have long to wait!

Just a word of caution: some people say, in fact Steven Hunter told me, that having my left atrial appendage clamped would mean no more anticoagulants, but three other medics, the hospital doctor I saw after the op, my EP and my GP all said no way! For me it’s no big deal though, and I’ve listened to them. I’m not complaining! 😊

[waveylines in reply to Mumursa]

Gosh that's surprising. My EP told me clearly I would not require Anti coag afterwards....wellshort term maybe during recovery. Anti coags don't work well with me.....I bleed too much & it has caused problems. So if I was ever in an accident I dread to think if I didn't get treatment quick what would happen. So not to have to carry that risk anymore would be most welcome.

[Mumursa in reply to waveylines]

I appreciate its a balance of risks for each individual, but I also got the impression there were just different opinions amongst the medical profession. As it turns out, I still have AF and don’t have any problems with bleeding so I’m happy to avoid arguing with my gp on this one.

[waveylines in reply to Mumursa]

Completely agree, Mumursa - we are all different. Am really glad that you are doing fine with anti coagulation. 😊😊

[MummyLuv in reply to Mumursa]

so sorry to read you are still in afib Mumursa, is that after your mini maze? X

[Mumursa in reply to MummyLuv]

Thanks. I had the mini maze as part of a hybrid in September 2021. My pacemaker continued to record afib but I wasn’t conscious of it until last December when I started to notice episodes. They increased. I’ve just had 19 out of 28 days in afib in February and 4 out of 8 so far in March.

Not happy, but I’m still hoping it will go away before I have to try to get through to the health service! X

[MummyLuv in reply to Mumursa]

awe no, you must be so gutted. I hope things settle down x

[waveylines in reply to Mumursa]

Oh no am so so sorry to gear this Mumursa. After all that. Really hope it can be resolved

[JerrysGirl3 in reply to waveylines]

I hope you wear a medical bracelet stating you're on blood thinners. I had one when I was on various meds that could be dangerous if docs didn't know.

[waveylines in reply to JerrysGirl3]

Thanks JerryGirl3 I don't but I do carry a card.

[JerrysGirl3 in reply to waveylines]

you can get one made fairly cheaply on Amazon. Mine was great and medics can see that quicker than a card. Just sayin'

[waveylines in reply to JerrysGirl3]

You make a very valid point....I do know about them just hadn't got round to it......timely prompt. Thank u 😊

[nettecologne in reply to Mumursa]

I was also told by two specialists that the only way I could minimize the stroke risk without Anti coag is appendage clamping. And I too have so many side effects on Anti Coag that I had to stop taking them.

[Mumursa in reply to nettecologne]

I was surprised when I was told by a junior doctor just after my procedure that I would have to continue on the DOAC. My EP (not the same one as Waveylines, but same hospital) and then a GP, told me the same .

I often read that clamping the LAA reduces stroke risk, and some people are able to dispense with anticoagulant . I assume it doesn’t eliminate the risk if there are other factors - like leaky valves and afib.

I hope you’re in the group without the other risk factors and you can stay off the drugs.

[JerrysGirl3 in reply to nettecologne]

just a question cos I'm not familiar with your name, did you have a stroke once before that you need to minimize a stroke risk? I'm seeing so many different stories here about procedures people are doing thru for stroke risk and other things, and then those procedures turn into other procedures.... I am a stroke risk and I stopped blood thinners two months in because I was getting sick from them. I have a congenital PFO that everyone wants closed suddenly (meanwhile even tho it was #1 on my list of medical issues, NOT ONE DOCTOR EVER MENTIONED IT until I made mention of it after Covid vaccine raised my BP to 220/110!! I'm 68 and I was born with it and have lived with it. I had a stroke in 2015 two months before I was diagnosed with leukemia. I'm suddenly a stroke risk. I feel I would put myself more at risk having the PFO closure because a worse medical issue is the excessive interior scarring I suffer from which could eventually weight down the device and result in having it taken out! I guess a person (and their doctor ) has to take everything into consideration before making a decision. And a doctor has to respect a patient's choice. I feel fine and I know a stroke can come at any time, but so many things, like the burst bowel I almost died from in 2015, can come out of nowhere as well. Sorry for not advocating but then again like I said, I don't know your past histories.

Good luck!

[nettecologne in reply to JerrysGirl3]

No stroke as yet but AF.

[bassets]

Very best wishes for a good outcome sooner than later x

[waveylines in reply to bassets]

Thankyou bassets.....am sure there will be a long wait but am OK with that...had a few surgeries in recent years (not heart) so used to it. Hopefully it will be as Dr Kirkwood said (EP) but am not expecting it.

[Auriculaire]

Really hope this goes ahead for you soon. Found the comments about half dose anticoags interesting too. Have you found since being on the half dose that you bleed similarly to on the full dose if you cut yourself?

[waveylines in reply to Auriculaire]

I bleed less easily than I did Auriclaire but being on half dose still means I'm prone to bruise easily and if I cut myself takes longer to stop. The difference is I've not had any more big bleeds and haven't had to be fast tracked since. I await with interest for the research on individual needs of anti coag. He was very supportive of me though of course he couldnt officially say it was as effective .......

[MaryCa]

He's a nice consultant. You got great information there. Remember the docs work as teams so he's probably correct in saying the waiting times, cos you're going to mini maze doc from him. Best of luck with the mini maze and the atrial appendage removal.

[waveylines in reply to MaryCa]

Thankyou MaryC. I really appreciate your kind words. 🤞🤞

[Hidden]

Excellent news waveylines, fingers crossed everything goes to plan as it should. Great to have such a positive outlook…..all the best

[waveylines in reply to Hidden]

Thanks Flapjack. Your kind words are much appreciated.

[nettecologne]

Thank you for your informative post. No one told me about that. I had chemo once and radiation twice (as breast cancer thrice). One ablation failed. I knew about cancer treatment and heart probs but not these specifics. Will be following this up. Unfortunately I cannot go to your surgeon as I am in Germany.

[waveylines in reply to nettecologne]

Am so sorry to hear this Nettercologne. I think cardiotoxicity affects people in different ways and depends on what treatment you have, how long, strength of dosage, state of your heart (mine was excellant) and how you respond. I have Afib, a friend of mine has heart failure: we had the same treatment. My cancer treatment was for breast cancer. I had chemo FEC-T × 6; masectomy; Herceptin 6 months; radiotherapy 15 sessions & DIEP reconstruction with 7years of Estrogen blocking therapy. It's difficult to know what caused what but research has shown that 3/5 of my chemo agents used are specifically linked to Afib. And Herceptin caused left ventricular damage but luckily mine repaired itself after a while. Whether a combination treatment like many have compounds the effects I don't think is really known.....well not when I had it at least.

[nettecologne in reply to waveylines]

In 2013 I had FEC 3x and DOC 3x. Then Herceptin 18 times. In 2001 (left side) and 2019 (right side) I had radiation therapy, I think 30 each? No estrogen blockers, as my body could not take any more.

[waveylines in reply to nettecologne]

That's a lot of rads sessions. I know what you mean my body definitely felt like it had had enough too. I had a break in between after cancer treatment before undertaking the DIEP. Much needed rest. The chemo landed me a stay in hospital twice.

I remain very grateful. Effectively so far have been given nearly 8yrs of extra life that I wouldn't have had without this aggressive intervention. There are consequences but given everything am doing really well. I'm lucky.

[Sunny-fl]

Thank you for posting this interesting update and sharing your experience. Your EP sounds very good. Best to you.

[waveylines in reply to Sunny-fl]

Thanks Sunny-fi.

[4chickens]

sounds a fab EP I’m sure your wait will be as he predicts or he wouldn’t of said it. The mini maze have continued with minimal disruption. Mines a hybrid which requires both surgery team and EP team, which is why it has been cancelled and they’re not scheduling at present.

[waveylines in reply to 4chickens]

Thankyou 4chickens. I'm so sorry that this has happened to you. I really hope it gets sorted out soon. Have they offered you an alternative way of doing it that they can book? Sending you big big hugs x

[4chickens in reply to waveylines]

not at the moment.