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Ablation or not? I really don't know what to do

Iamfuzzyduck profile image
44 Replies

I can't make up my mind whether I should go ahead with one, I did speak to Dr Wolf and we concluded that some kind of implantable monitor may be the way to go to see really what, if anything, is going on with my heart in the long run. My husband and daughter want me to have the ablation so that I am not caught out somewhere having a huge afib episode, EPs want me to have an ablation, I am so confused, I don't know what to do...I have had maybe three episodes of afib after migraine and vomiting, with or without alcohol in the picture, migraines seem to happen on an electrolyte imbalance or physical stress and when the heat starts rolling in in Texas, but it is ok when I have adjusted to the heat, so I can actually tolerate a lot of heat after April/May, I can't actually figure out the cause, I think there are more than one causes...

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Iamfuzzyduck profile image
Iamfuzzyduck
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44 Replies
mjames1 profile image
mjames1

I like his approach. Rather than rush into an ablation, sounds like he first wants to find out exactly what your afib burden really is. The valuable information collected will be useful not just for Wolf, but also to any ep, should you eventually decide to go in that direction.

As to your family's concerns, they should understand that even with an ablation, no guarantee that you still won't have episodes from time to time.

What you need is a good solid home/away plan on how to manage afib episodes without having to go to the hospital. It could be either a rate control drug protocol, a rhythm control protocol, or a combination. I ran to the hospital for cardioversion for my first three afib episodes, but once I got a good home/away plan, I have managed these episodes at home or away for the last 35 years.

Jim

Iamfuzzyduck profile image
Iamfuzzyduck in reply tomjames1

Thank you! I think my urgency is that Dr. Natale's office called when I was in with Dr.Wolf (I had been walking around with my phone glued to my side for four weeks waiting for the call), obviously I couldn't take the call and it was to schedule the ablation for April- so I really need to decide now what to do, postpone the ablation and have the device or just proceed with the ablation (if that time is still available)...

mjames1 profile image
mjames1 in reply toIamfuzzyduck

Maybe I missed it, but what exactly did Dr. Natale tell you in terms of what arrhythmia he thinks you have and how will he approach them? Did he see anything on the right side of the heart that needs a ablating, or is he simply going to do a PFA on the right side for a fib?

Jim

Iamfuzzyduck profile image
Iamfuzzyduck in reply tomjames1

My arrhythmia is paroxysmal afib, they are all agreed on that. PFA on the right side, 20 mins to ablate, the remaining time (total time under up to 60 mins) fixing the..(I didn't get that bit, zoom call and accent) but I think it could be where they push the catherter through, the septum? It was just repairing or sealing what needs to be sealed as a result of the procedure, I think. A straight forward PVA I believe

mjames1 profile image
mjames1 in reply toIamfuzzyduck

Wow that is fast! If both doctors agree that you have afib, and a fib only, why does Dr. Wolf want to monitor you? Btw, PFA and all pvi's are done on the left side. Flutter and some tachycardia are on the right side.

Jim

Iamfuzzyduck profile image
Iamfuzzyduck in reply tomjames1

To figure out what the afib burden is, I did have many PACs also after my huge afib event in November. It was a suggestion to help assist in my decision on a procedure. My afib is set off by migraine and vomiting, which could be induced by an electrolyte imbalance (after a 5 mile run 10 years ago and after a long day out with a couple of glasses of wine with my friends in November). I think it is to see if I am having episodes I am not aware of and to really see what is going on. I was sent to ER by my GP in an ambulance in November because I was having afib with RVR. Sorry, then it must be the left side!

trevs7 profile image
trevs7

I know exactly where you are coming from with this dilemma, as I am sure many on here will as well. I was diagnosed with PAF in 2021 and did research after research to get to a definitive decision (as you are trying to get); but never did.

There are differing opinions from everyone, including the EPs' about the best course of action. Some will say treat PAF early with ablation as first line approach whilst others will support only having the ablation if/when the medication becomes less effective.

I started off with pill in the pocket to address PAF when it happened, but it seemed to take a minimum of 12-hours to resolve. Although I was only getting a few per year, I decided to go for the ablation on the basis that the evidence to me points to it progressing (although at different rates for different people).

However, I did end up having another few episodes after the ablation blanking period, so I am now 1-month post my 2nd ablation. Do I think I made the right choice --- I don't know. Also, what does a successful ablation actually mean. I used to think it was a "cure", as I am sure that there are those who have never had an episode since their ablation. However, some EP's will say that for some people ablation success can just mean a reduction in AF burden.

Unfortunately, AF is not like having a problem where there is a ubiquitous answer. It's one of those things where we all have to decide for ourselves after evaluation of the AF burden, effectiveness of medication on oneself, AF progression (if applicable), and the potential risks/rewards of ablation.

The one thing that is really good, is the support you will get from the good people on this site, as it really helps to know that you are not alone with this problem and they are always willing to help where possible.

secondtry profile image
secondtry in reply totrevs7

Great advice trevs7 👏.

Steve101 profile image
Steve101 in reply totrevs7

Agreed, great balanced advice. I am going through the same dilemma as to whether the next stage for me is an ablation. I am waiting for the results of some tests, and I will then make a decision after taking a sounding from this forum. This forum is my go to place for advice, whilst the medical advice should always take priority the feedback through experience from this forum is invaluable in helping to make a better informed decision.

Iamfuzzyduck profile image
Iamfuzzyduck in reply toSteve101

See my response to Jim, I am in a quandary about whether to take the ablation on offer with Dr.Natale as he is the best EP (and DR.Wolf is the best cardiac thoracic surgeon)and it would be next month so I need to decide quickly...

Iamfuzzyduck profile image
Iamfuzzyduck in reply totrevs7

Thank you, it is difficult to know what to do-I currently don't take meds except aspirin, or rather they are pip...

Nerja2012 profile image
Nerja2012 in reply totrevs7

Trees 7. I'm going through this thought process at the moment, should I or shouldn't I ask about ablation, I've had PAF for 8 years and on average episodes twice a year, I've never progressed in all that time but the episodes are on average about 9 hours now instead of 2 or 3. So the dilemma do I opt for ablation before I get too old, I'm a very fit and healthy 79 year old Female ( walk on average 30 mile week,) do I or don't I wish I knew !

trevs7 profile image
trevs7 in reply toNerja2012

Hi Nerja,

Wow, you are doing better than me, my afib started when I was 59.

I guess the question you should ask yourself is "how bothersome is the afib when it happens". If you can manage it and it's not too traumatic for 2 occurrences per year, plus it doesn't appear to be progressing very fast towards persistent/permanent, then maybe the pill in the pocket may be the way to go for now.

In terms of your age... it sounds like you are quite fit and from speaking to my EP, it isn't age that would stop you getting one in the future, it would be other health related issues that are more significant in determining whether you can have the ablation.

Kind regards,

Trev

P.S. Keep up the walking, you'll be surprised how good that is for you :-)

Nerja2012 profile image
Nerja2012 in reply totrevs7

Treve 7. Episodes more of a nuisance than bothersome I just think "here we go again " and sit it out, Bisoprolol as PIP, always convert myself and never go to AE, I've only seen a Cardiolagist once in 8 years and no follow up from GP ither. I think it's age that bothers me most in terms of living alone. Would ablation take that fear away but from what I've read on this forum an ablation doesn't come with guarantees ither. As far as walking goes my kids said any plans about a funeral Mam. I said I won't need one I'll walk there !

trevs7 profile image
trevs7 in reply toNerja2012

Nerja,

Love your humour :-)

In terms of taking the fear away... it doesn't as it cannot guarantee that level of success.

Even now after my 2nd ablation, I still don't know if I am going to have another one; or not. I thought I would feel mentally stronger after this second one, but I don't at the moment. Maybe in time (providing I don't have anymore afib episodes for a year or so) I will feel better about it.

I don't want to influence you too much as it has to be your decision, but on the surface, it doesn't sound like your afib causes you too much of an issue.

The truth is whatever decision you make isn't the right or wrong one; it's just the right decision at that time.

Kind regards,

Trev

Nerja2012 profile image
Nerja2012 in reply totrevs7

Thanks for your input Trev, you are a lot younger than me so who knows what advances will be made in the future, Ican understand your uncertainty. I wish you well and hopefully your episodes will continue to be less.

trevs7 profile image
trevs7 in reply toNerja2012

I may be a bit younger, but probably not as wise as you Nerja, and certainly not as fit :-)

You take care and rest assured that whenever you need someone to communicate about your afib (decision or otherwise) there is great support here for you. Remember you are not alone with this.

Kind regards,

Trev

Nerja2012 profile image
Nerja2012 in reply totrevs7

👍.

secondtry profile image
secondtry

I agree for most (extreme athletes one exception) it makes sense to deduce there are an accumulation of causes that tip you over the AF edge.

Re ablation, it is YOUR decision only after a frank discussion with your trusted medic. I think your gut feel is to postpone and maybe from today keep a diary of episodes and possible triggers to build up a picture for yourself/medics when you reassess next year. Also double down on Lifestyle changes.

If you agree with this action, remember no-one can ever dispute whether you made the right decision as going ahead now with an ablation gives you no guarantee of no more AF, no more medication and in relatively rare cases can produce other complications.

Hope it works out to your advantage 🤞🙏.

Iamfuzzyduck profile image
Iamfuzzyduck in reply tosecondtry

Thank you!

Buzby62 profile image
Buzby62

My thoughts

Three episodes is not many.

The more information you can get before making a decision the better, so the loop recorder could prove very useful.

Having an ablation doesn’t remove the risk of an episode while travelling but if successful you may build the confidence in time to trust it.

Keep asking questions on here and hopefully you will get answers for yourself and be able to explain the situation better to your family and friends so they understand your decision.

Best wishes

Iamfuzzyduck profile image
Iamfuzzyduck in reply toBuzby62

Thank you! I think my husband is now leaning more to the recorder but he just wants me not to have problems!

ozziebob profile image
ozziebob

I think Dr Wolf requires a loop recorder for all his patients prior to proceeding. This seems to me a reassuring confirmation that he wants the most up to date and accurate assessment of your heart before he potentially starts irreversibly "scarring" it (on the outside).

AustinElliot profile image
AustinElliot in reply toozziebob

Dr. Wolf usually installs the Loop after the Mini-Maze - usually the followup. I understand from some folks he might be doing it during the WMM, I think its a insurance thing.

ozziebob profile image
ozziebob in reply toAustinElliot

I am simply repeating what I have heard Dr Wolf say in one of his monthly live YouTube videos on AF. I took particular notice of this aspect of his WMM protocol.

Are you saying I am "misremembering", or unintentionally misleading others? or is it the "all' that is the issue? or that he only does the prior loop recorder when insurance requires it? I am confused. 🤔

AustinElliot profile image
AustinElliot in reply toozziebob

Ozziebob, I certainly don't know you. So I am not saying you are saying anything. This is just what I have seen posted.

1. I am on the Wolf Mini Maze group - they talk about the placement of the Loop all the time. I am scheduled for a WMM in August 2024 (no mention of a Loop prior)

2. Its very rare of in the WMM group gets the Loop installed prior to the WMM (I can't say no one). Most people are traveling from around the country to get the WMM, it would be very expensive to make the trip to Houston just get the Loop.

3. In order to get insurance to pay for the Loop it has to be done at a particular time, my understanding in the past is that it could not be done at the same time as the WMM, that seems to be changing. In the posts most got the Loop installed at the final followup with Dr. Wolf prior to leaving Houston.

4. I have really not heard anyone in the WMM get a Loop as part of the diagnosis process, most seem to get a 14 day Holter/Zio Monitor. I am not sure what a Loop would show that a Holter/Zio would not.

5. The Loop is installed as a tool for Dr. Wolf to verify that WMM remain AF free, this allows patients that experience flutter after the WMM to assure that its not AF. This is how Dr. Wolf can claim mid 90s success rate with WMM.

Again, just what I have seen in the Facebook group.

ozziebob profile image
ozziebob in reply toAustinElliot

Thanks for the clarification.

I am an interested outsider in WMM, and unfortunately don't have access to the information available here via a WMM FaceBook group (by choice), so your experience and clarification is very helpful to members like me.

I was simply trying to reassure the OP that such diagnostic tools are not to be feared, as she mentioned that would be her first step if she pursued the WMM with Dr Wolf viz. "I did speak to Dr Wolf and we concluded that some kind of implantable monitor may be the way to go to see really what, if anything, is going on with my heart in the long run."

From your explanation, perhaps I have been misled by the OP's words? and it certainly makes more sense that a self-attached Zio type monitor would be preferable prior to travelling for the procedure itself.

But between the video I tried to quote, the OP's words, and your reasonable explanation of your experience, I hope I haven't intentionally misled the Forum.

Confused? 😕Me? 🤔 No change there!

AustinElliot profile image
AustinElliot in reply toozziebob

Hi Ozziebob,

No Worries,

The reason I said that I can't say (no one has the loop) is because of the OP. I just have not heard that before.

She is here in Texas, so that makes it much easier to travel for a Loop.

Thanks Elliot

Iamfuzzyduck profile image
Iamfuzzyduck in reply toAustinElliot

Howdy, Elliot from Austin..good luck with your WMM. Sorry to confuse everyone with my post!

AustinElliot profile image
AustinElliot in reply toIamfuzzyduck

No worries, I saw you were local. I’m in Austin. So going to Houston for the WMM is a no brainer.

Although I’m going through a good period with no AF. yay!

Good luck figuring yours out.

Iamfuzzyduck profile image
Iamfuzzyduck in reply toAustinElliot

Did you look into having an ablation? Glad you have an AF free moment!

AustinElliot profile image
AustinElliot in reply toIamfuzzyduck

Hi Fuzzyduck,

Well my EP seems to be qualified, he did a poor job of selling an Ablation - his comment was that it was 70% effective for 1 year and that reduce 3% every year after. That got me pretty freaked out, so I started reading and joining these groups.

This forum is by far the best, the American Heart Association is ok, but does not get the volume and consistency of responses, not sure why.

I am pretty sure I saw the posts from MommyLuv or 4Chickens that mentioned the Wolf Mini Maze, so I joined the Facebook group. The discussion about Left Atrium Appendage Occlusion, mid 90s success rate, ablation of the ganglion plexus and Ligament of Marshall have convinced me that this is the better procedure for me.

I figure as on the younger side 56, that doing the procedure well I am strong and Dr. Wolf is still practicing makes sense. I made this decision when my AF was occurring every 30 days. My perverse thought now is that if I go another 5 months AF free that I will have a tough decision. I seem to have found a couple of triggers (or at least the illusion of these)

Thanks Elliot

Iamfuzzyduck profile image
Iamfuzzyduck in reply toAustinElliot

I agree on the AHA forum!! I have seen two EPs and they have said 90% for me but it could be that my Afib is not advanced and they believe it would be straight forward. Dr W suggested the loop to see just what my afib burden is, because as far as I can make out I only get it on migraine with vomiting and not every time, but he says I am probably having more events. Then I can make a decision, but you have Dr.Natale in Austin, and if I were to have an ablation I would have it with him. I just turned 57 so like you it is the thought that I would have an easier recovery now rather than later. I am still undecided! I do need to make a decision before tomorrow about the ablation...also I wonder if dr W has trained up a replacement in Houston?

AustinElliot profile image
AustinElliot in reply toIamfuzzyduck

So far the only Doctors doing what Dr. Wolf does are Dr. Wolf and Dr. Ohtsuka in Japan. There are some Doctors doing similar procedures and then there are myriads that do a Hybrid/Convergent procedure. All are a little different.

I had sought out a second opinion from Dr. Natale, but ultimately decided that I am good with the chosen path with the Mini-Maze.

My AF is also not advanced, I am sorry I don't mean to make this more difficult, but I would have a hard time believing the 90%. The industry standard for ablations is 70%. My EP was unwilling to give me a different number than what is the accepted standard. I do know of at least 2 people that had an ablation 20 years ago and are fine now. I do know of lots of people that are on their 2 or 3 ablations, hence my desire to go to the WMM.

If you are on facebook consider joining the WMM group. There are lots of posts by folks of the WMM that were not 100%, so you can see the discussion of what the group calls the 5%, those that have to have a followup ablation (usually for flutter). I don't understand why most are successful and then some have flutter. Certainly hope I won't have that.

Good luck with your decision. No matter what, it will be the right decision for you and it will improve your quality of life.

Iamfuzzyduck profile image
Iamfuzzyduck in reply toAustinElliot

I know the average success rate is around 70 % but I think their reasoning must be because it is so early on in my case, I don't know but the two EPs were independent of eachother, one said 90-95%, the other said 85-90%, they probably mean I have more chance of success than the average patient if it is a straight forward PVA but not if they find other issues with arrhythmias, I just don't know and still don't know what to do!!

I have looked at the facebook group but I found it a bit scary, it was a couple of months ago when i looked and I certainly wouldn't rule out a WMM...

Iamfuzzyduck profile image
Iamfuzzyduck in reply toozziebob

It was a suggestion based on my personal history, to see if it is worth having any procedure and to figure out if I am having missed Afib episodes. I am local so it is not a problem to do it. I don't know though if insurance will cover it..

kliving profile image
kliving

There is nothing wrong with waiting for more facts. If you are having only occasional AFIB. Also, something to think about I suffered from migraines for a long time as well as AFIB, I started on metoprolol and my migraines went away, I had to switch to diltiazem because metoprolol didn't agree with me and the benefit continued. I'm not sure if it would help you, but it might be worth a try.

Iamfuzzyduck profile image
Iamfuzzyduck in reply tokliving

Thank you, I think metoprolol is used for migraines. I did take it after my November episode but it made me feel muffled and the doctors at the time allowed me to discontinue. I don't often have migraines but they can be brutal when I do have one!

kliving profile image
kliving in reply toIamfuzzyduck

I didn't care for the side effects from Metoprolol either. But there are other choices out there to try. I am not advocating an ablation, but it did help me, even if not a complete success. I have a "complex" case of AFIB. Just realize that there is a good chance your episodes will become more frequent as time goes on. It seems to be the nature of AFIB. There are lifestyle changes that can help keep it at bay. Take some time and do your research and look for the best you and your insurance can afford.

Murphy10 profile image
Murphy10

Hi,

I had my ablation last Tuesday. I was nervous as hell leading up to the procedure. My AF started off with a couple of episodes a year but then became more regular and longer.

The procedure is fairly straightforward and nothing like major surgery.

After my ablation I am feeling well and while early days I hoping it will give me the best chance of getting off medication which I don’t like.

There seems to more agreement among medical experts that Ablation early gives you the best chance to give you a better quality of life.

Fear can be the worst feeling and cloud your judgement. I think your family members are making their recommendations without fear. If you take your fear away what would be your decision? That may help you with your decision.

Keith

Iamfuzzyduck profile image
Iamfuzzyduck in reply toMurphy10

Thanks for the info and I am glad you are doing well post procedure, may that continue!!

bassets profile image
bassets

And what would you tell a friend in the same circumstances as you? I am thankful I passed for an early ablation as it reduced my awful symptoms drastically. I would have another if I need one now. Good luck with your decision.

Iamfuzzyduck profile image
Iamfuzzyduck in reply tobassets

Thanks that is one way of looking at it. The thing is I had my afib event in November and as far as I know I haven't had one since and I am not taking meds right now so I am not sure what to do!!

bassets profile image
bassets in reply toIamfuzzyduck

That's great. Long may you continue to avoid it. Best of luck :)

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