Had an ablation but regret it? Or regret putting it off?

I am about a week out from having an ablation. (got my negative covid test back today) I keep seeing people with what I can't tell are minor nits to major issues following an ablation. It's making me wonder does anyone regret going through with it or wish they had done something different? Or wish they'd done it earlier.

Any lessons learned will be appreciated.

My reasons to proceed is that none of the interventions I've tried (and I've really tried) have worked to date. It's also a golden window for me in timing as the best is available to do my procedure and insurance has got me covered. This may not be the case 1 or 5 yrs from now.

As well, even if I get a working non ablation intervention now (only ECVs have worked and only for short term appx 3 and 9 days) I will most likely need an ablation sooner or later.



Edited 1 time(s). Last edit at 08/23/2020 11:39PM by NotLyingAboutMyAfib.

I've had six opportunities to learn things from ablations. Here's what I learned that matters:

• Impressive medical credentials, schooling, and lofty titles don't mean squat. Neither does bedside manner.
• Experience doing AF ablations is the first, second, and third most important measure of an EP.
• There are many EPs doing ablations who don't have the training or experience for it.
• You will probably experience AF, flutter and ectopics in the first few weeks following an ablation. Expect them.
• You should probably be on a mild antiarrhythmic for at least the first month afterward.
• You will definitely be on an anticoagulant after an ablation, probably for at least 3 months. Be religious about taking every dose on time.
• You will have a mildly elevated resting heart rate for months after an ablation, even up to a year. That's normal.
• Ask your EP if they use vascular plugs. If not, act annoyed and ask why not because that will mean spending 6 hours flat on your back after the procedure vs. 2 hours. And trust me, the lying flat on your back thing is the worst part of an ablation.
• No matter what EP you see, it's always possible you will need a touch-up ablation. Don't expect it but don't be surprised if it happens.
• Never let any EP do more than one repeat procedure. If they can't get it right on two tries, you're a complex case and need to see an elite EP.

Edited 4 time(s). Last edit at 08/21/2020 04:22AM by Carey.

NLAMA,

As a non-ablatee, but someone who has been active on this board for 16 years, here is my opinion.

DO IT NOW!

Quote

Or wish they'd done it earlier.

Quote

only ECVs have worked and only for short term appx 3 and 9 days

The earlier in the progression you get an ablation, the more likely success and the less "work" that will be needed in the ablation.

Your Olympic heritage shows in that you've tried everything possible with little success. You have access right now to arguably the best ablating EP. Take advantage of the situation.

I've had four. Still short weekly episodes self ending without meds.
But I've no regrets. I'd do it again.

I'd have regrets if I hadn't try.

Good luck NLAMA! Mine with him for a touchup is scheduled right after yours!


“ Any lessons learned will be appreciated. ”

You may need a Rx for Lasix filled. You may not need to take it but after your index, he gave both me and the guy before the same Rx to fill and only take if gained 2-4 pounds of fluid retention. I recommend asking now if he plans on giving you that preventive Rx, to call it in to your local pharmacy —so afterwards you don’t have to deal with getting it filled. Just a suggestion. You probably won’t need it. Maybe he won’t give you the Rx. I only needed it once.



Edited 2 time(s). Last edit at 08/20/2020 08:32PM by susan.d.

Thanks Carey, George and Pompon - I'm going through with it- just a little pregame jitters. Hoping I can tell a good story that will help others feel at ease when it's all said and done.

Carey - your list of what to expect will help a lot.

I am really looking forward to being able to resume swimming, cycling and weightlifting once the initial healing period is over with. I guess walking and light swimming initially.

Susan,

They called in some prescriptions - potassium and something else - I have to pick them up yet.

11 week post ablation with no regrets. My thoughts were Natale will eventually retire so I better act now or i may regret that even more.

Bonus I got to charge nearly $70k to my medical insurance!

Quote
NotLyingAboutMyAfib
Susan,

They called in some prescriptions - potassium and something else - I have to pick them up yet.

Yeah...potassium 20 MEQ most likely to take only if you need lasix (Furosemide). I recall the low dose anti-Arrhythmia drug, Eliquis were Rx as well as something the other guy and we’re given for GERD. Somehow all the guys Rx’s were put in my discharge folder so I knew we were both given the same stuff.

I selected my insurance based on N being in network. I knew this day was coming.

Brilliant. Good pre planning.

Quote
NotLyingAboutMyAfib
Carey - your list of what to expect will help a lot.

Thanks, I really did try to pour my key experiences into that post, but I wrote it off the top of my head and when I looked at it tonight I saw some things I really didn't word so well. So I went back and edited it a bit. Still says the same basic things but I hope with a little more clarity.

I've been prescribed a PIP for some days after each ablation.It seems usual, here in W-EU.

Ablation January 2003 in Bordeaux after 18 months of long term persistent AF. Second ablation three days later because AF recurred.

Since then nsr. That's over 17 years. Lots of ectopics but supplements damp them down so I hardly notice them.

Regrets? Can't believe my luck in having it last so long.

Gill (pronounced 'Jill' and female)

Gill - that's odd they went back in so soon. I thought they prefer to let things settle down for a while - a few months now the standard?

Thanks

“Ask your EP if they use vascular plugs. If not, act annoyed and ask why not because that will mean spending 6 hours flat on your back after the procedure vs. 2 hours. And trust me, the lying flat on your back thing is the worst part of an ablation.“

Best advice Carey. How true. I had the plugs, was assigned a strict conservative RN, who on his own would not let me get out of bed from midnight to the next shift change. Then it took until 10am before they had time after the new RN on duty to finish her rounds, meds, to get me someone to help me out of bed the first time. I didn’t take my first hall walk until past 10am. Pure hell. Bed pans, etc. btw, my orders were not modified for staying in bed -there was no written reason-and the morning nurse just shook her head saying I’m so sorry you shouldn’t had been on your back this long. I also wasn’t allowed water from that nurse. Just green sponge sticks dipped with a mouthwash taste.

So get out of bed and drink NLAMA! And press real firmly with your fingers over the plugs when sitting up I was told



Edited 2 time(s). Last edit at 08/21/2020 05:03PM by susan.d.

Going back in 3 days later is definitely unusual. The insertion sites wouldn't even have healed yet. Most EPs wouldn't do that unless it were some sort of emergency.

Quote
NotLyingAboutMyAfib
Gill - that's odd they went back in so soon. I thought they prefer to let things settle down for a while - a few months now the standard?
Thanks

Quote
Carey
Going back in 3 days later is definitely unusual. The insertion sites wouldn't even have healed yet. Most EPs wouldn't do that unless it were some sort of emergency.

This was fairly standard back in the day at Bordeaux. They had (& have) a lot of people who traveled internationally for their services (just like Natale). They would have people who had traveled there wait around for a number of days & if they saw something amis, would go back in for a "touch up" before they sent the person home. This happened to a number of our members who used their services. This may have included PC, MD and Hans Larsen, our founder and others in addition to Gill.

Susan.d

Prof Haïssaguerre said that if I lived locally he would have waited to see if it stopped by itself but since I had travelled from London he did it right away.

In fact it was the right thing to do - he thought there might be a gap in the lines but that was not the case. There was a very toxic focus In the coronary sinus which he said was extremely difficult to find and ablate, and he wasn’t sure that he had got all of it. I assume that it is the cause of my many ectopics.

I don’t think a less experienced/gifted EP would have found it so I was very glad I had gone with the top man in Europe.

Gill

I have had 4. 2 with a local EP 2 with Dr. Natale. Hindsight says I should have had my first with Natale. He was at CC then and people on this site at the time highly recommended that I should.
I'm still having some issues right now. However, I am in NSR pretty much all the time. I'm doing the things that I enjoy without drugs.

Gill- you mean you were addressing George N not me. I don’t know anything about France methods.

Good decision in my opinion. Understand also, that while not perfect, you are getting the benefit of all the improvements to this procedure they have gained over the years, and success rates have improved fairly dramatically. Good luck better times are coming for u!

Susan.d

Yes, sorry, I was replying to NLAMA and to George.

Gill

Everyone's threshold for tolerating this condition is certainly a factor. Mine is high with one or two per year and the most ever 7 in 2 months over 11 years, along with easy chemical conversion. I would say Ive gotten no worse and would be an easy patient.
With your history, I would have been on the table months ago.

Just guessing but Dr N uses vascular plugs (some kind of dissolving collagen with a butterfly stitch?) They glossed over this in a phone call



Edited 1 time(s). Last edit at 08/22/2020 02:50PM by NotLyingAboutMyAfib.

Yes, Natale uses vascular plugs. It reduces the time you have to lie flat on your back from 6 hours to 2 hours, which is a huge improvement because the lying flat thing is the worst part of an ablation, IMO.

Quote
Carey
Yes, Natale uses vascular plugs. It reduces the time you have to lie flat on your back from 6 hours to 2 hours, which is a huge improvement because the lying flat thing is the worst part of an ablation, IMO.

IMO too. My back won't forget.

NLAMAF - I have no regrets. Only positive comments. I've had 3 Natale ablations. The initial in Cleveland (2003) at age 59 and then 11 years later... in Austin, TX for A-flutter which involved isolating the LAA... and a touch-up 7 mos. later... again, in Austin. All has been calm since then. My history is in the archived posts, but a short version is that
modifying lifestyle habits, staying well hydrated - I always optimize magnesium intake... watch calcium intake carefully etc. and I never miss taking daily magnesium... at least 600 mg daily... plus many other 'restorative type' supplements to keep me healthy in my old age.

My post-ablation experiences were all non-eventful...minor discomfort - if any. I did have recurrent flutter after #2 which I was told was not uncommon, but it was managed with #3 successfully, thus far....5 years later...heart still peaceful.

My Austin experience was amazing. Thanks to Dr. Natale!

I look forward to reading your post-procedure report and wish you the very best, positive experience as well.

Kind regards,
Jackie

I will definitely keep everyone posted with my post - op state. I owe it to the forum and to new members having AF issues.

Despite having the best - I am a little scared of this procedure being that it's new to me. I guess it's that way with everything. Flec was scary, ECV was scary - they aren't any longer but since they either didn't work or didn't stick I am worried that this might be the case here too.

As I've stated many times. I've tried to walk the tightrope and done everything I can do right to get back in to NSR. My heart just seems to want otherwise. How did it go from not a factor to THE ONLY FACTOR in such a short time is beyond me. There really were no warnings that I could think of looking back prior to my 1st event - but for some reason I had taken an interest in ECGs as I had a device which tracked mine upon use and saw some PVCs and runs of three but I didn't know the significance and my cardi at the time was more concerned with flooding me with statins... and avoiding me getting a CAC despite me asking for one several times.


The last thing I wonder about is how NORMAL life will be for me.


OK - I know that speedballing crack cocaine is off the table now (jk) but will I be able to exercise to the level I want?

Will my heart be stronger or better once healed?

Will I end up with a pacemaker at some later stage because of this procedure?

If Dr. N retires - who will follow up with # 2 or # 3 should I need it?

Can I have an occasional brandy? A few glasses of wine?

Will I need to walk the same tightrope I've been walking the last year to stay in NSR?

I've got all of these damn powders (taurine, potassium, magnesium, ribose, etc) that haven't done anything to date. Do I need to take those in the future once my ablated heart has a chance of staying in NSR?

I understand Jackie's advice - watch calcium, get magnesium, stay hydrated and the other things I do for CAC regression (D, K2 MK7, ubiquinol, fish oil (but not too much))

It will be nice to be in NSR and to have it stick for while - years, decades hopefully. Thanks all.

Dr Natale future retirement is always on my mind and weighed heavily on my timing of my procedure, which was delayed 1 year due to a--hole insurance company. I have asked the question if we can start a list of Doc's that are youngish that are on Dr Natale's level or close.

I was back to near normal active life pretty much 7days after procedure could of been sooner but wifeO held me to Drs orders. After 1 month have not held back physically. I have damn ectopics now, but that should pass and I don't let those hold me back more of a mental hurdle.

Need to add Carey's was right laying in back is by far the worst part of the procedure. I had to apologize to the nurse i was alittle grouchy about that being i was high and out of it🤕



Edited 1 time(s). Last edit at 08/23/2020 03:46PM by Driver.

Quote
NotLyingAboutMyAfib
Will my heart be stronger or better once healed?

AF decreases cardiac output, so it will be better. The electrical remodeling that occurs with AF that makes you more prone to remain in AF will also stop and reverse remodeling will occur, making you more prone to remain in NSR. An ablation won't make your heart stronger than it was before the AF appeared -- only physical fitness can do that -- but it will stop the deterioration that AF causes.

Quote

Will I end up with a pacemaker at some later stage because of this procedure?

No. I've never heard of someone needing a pacemaker due to an ablation unless it was an intentional AV node destruction, in which case you would know going into the procedure that that was going to be the result.

Quote

If Dr. N retires - who will follow up with # 2 or # 3 should I need it?

He's not the only capable EP in the world. Cross that bridge when (if) you come to it.

Quote

Can I have an occasional brandy? A few glasses of wine?

Of course! (Hell, you can have them now. Won't change anything.)

Quote

Will I need to walk the same tightrope I've been walking the last year to stay in NSR?

No, and that's the BIG thing. You won't have to do anything at all to remain in NSR. And notice that the tightrope walking didn't work anyway. What will work is the ablation. The areas of your heart that are producing the chaotic signals will be walled off and incapable of causing AF again. Once you have a fully successful ablation (1 year of freedom from AF without AADs), the only way you'll experience AF again is if the disease progresses and new sources appear in areas not previously ablated. That's almost certainly what explains recurrences years later such as Jackie experienced.

Quote

I've got all of these damn powders (taurine, potassium, magnesium, ribose, etc) that haven't done anything to date. Do I need to take those in the future once my ablated heart has a chance of staying in NSR?

No. Just eat a decent diet and don't worry about all that. The only supplement I continue to take is magnesium and that's not to protect myself from AF (the ablation does that). I take it because modern farming practices have depleted magnesium from the soils and upwards of 60% of the population is magnesium deficient as a result. Just use common sense.

What you're going to discover is that once you're back in NSR for a few months without all the drugs and tightrope walking, you'll be able to put all this behind you and simply not think about AF anymore. It just won't be a factor in your life. And let me tell you it's hard for you to imagine right now just how wonderful that's going to feel but you're about to find out. It took a good 6 months for me to accept that it was real and quit thinking about AF, to quit paying attention to every little odd beat. And it took 12 months for me to put the Kardia in the drawer and forget about it (mine doesn't even have a battery in it). I think this is the thing a lot of people who continue to battle AF with drugs and supplements and tightrope walking don't really fully grasp. It is possible to simply remove AF from your life and not think about it or do anything about it anymore.

I’m not worried about him retiring. I’m more worried he could catch covid19 with all of his traveling. SeeIng the Twitter photos around 8-12 put me in mother hen mode in hoping he will remain covid19 free healthy. He does self test daily.

Good luck. He is a wonderful person. You can’t ask for anyone more caring. In CA, his staff are perfect as well.

Will they let you bend your knees while on back? I guess I can stretch and loosen up the days before the procedure. Some hot yoga?

Carey - if you're right about all that I am going to cry a river once I realize I have my life back. The worst thing about AF is the constant out-of-my-hands feeling with life. It's been so frustrating to have all the motivation and capabilities to ride my bike and see that an hour ride at 20kmh or less has this 57 yr old man pegged at 195bpm (which is 3-7 beats higher than I was allowed to ride when competing 32 years younger) and leaves the rest of me inflamed for days. No wonder I can't get my hsCRP down, I'm a virtual factory of it.

Nope, no bending of the knees because you can't do that without lifting your thighs, and those are exactly the muscles they don't want you using. No sitting up, no bending your knees, no nothing but lying flat. But now that Natale's using the collagen plugs, the two hours isn't so bad. But six hours was murder.

And after you're allowed to sit up and walk around, no lifting anything more than 10 lbs for the next 5 days. So if you're traveling alone, you need to either make sure your bag is <10 lbs or you need to package it up before the procedure and drop it off at UPS or FedEx to ship it back home. The lifting limit is an easy one to forget, so be careful. I did on the flight home following my Watchman device. And Natale himself had even warned me about that specifically because the Watchman requires a very large catheter that leaves a big hole. But some little old lady next to me on the plane was struggling to lift her carry-on into the overhead compartment, so I did what I would normally do without thinking -- I lifted her bag for her. I had it hoisted about halfway up when I thought "Oh crap, shouldn't have done that." Lucked out and didn't reopen the insertion site, which is good because I learned what that's like from my first ablation. I developed a hematoma that was pressing against my femoral nerve, and that hurt like the bejeezus for a month. EP had to prescribe percocets for it, and it left a huge bruise that covered my entire inner thigh stretching from my groin to my knee

Understood. I won't have much with me and I have help for any other stuff. Biggest concern is keeping my son from jumping all over me. We have snuggle time every night which is basically him do a cross of 'hop on pop' and MMA for 20-30 minutes. Mom's going to have to take this abuse for a few nights. I'll be watching from outside the octagon.

Quote
NotLyingAboutMyAfib
OK - I know that speedballing crack cocaine is off the table now (jk) but will I be able to exercise to the level I want?

My strong suggestion is to do a lot of your exercise at Zone 2 or approximating it as my friend, Mark Cuzzella MD, has done for 20 years with MAF training or just nasal breathing (more links here). Not because your heart won't be able to do more than this, but because I think it is optimal for many reasons. Primarily because it avoids the "U" or "J" shaped benefit curve for exercise (I recall seeing this the first time in 1990 in a study from Ken Cooper's clinic in Dallas). Mark Cucuzzella says he's "loafing" when he trains. The MAF objective is to train at the MAF heart rate (180-age) and then see if you can do more work at that heart rate. This takes a while to get used to. Mark epitomizes that as he's run (I think) 30 Boston's under 3 hours (he's now in his 50's). It really avoids the stress that exercise can cause. In the Zone 2 interview, it also notes how it really tunes up your mitochondria.

Hop on pop.... LOL! Yeah, that's a no.

You are a good father. He is a lucky little boy.

George - I will be doing zone 2 and Long Slow Distance - it's weird - I get pretty good benefits from just going out for a walk when I do it regularly.

Susan - thanks - just hoping I can stick around long enough to see him become an adult.

Health wasn't a primary concern (but should have been) when we went to have a child.

Hey NLAMA,

It's all going to be fine ..: really! You've stacked the deck as much as is possible with the good decisions you have already made, including foremost who you chose to entrust your heart too for this ablation process. These last few days you can now fully relax that grip and simply enjoy the ride from here on out knowing that you've done all the logical steps, including multiple attempts at Life-style risk mitigation, plus choosing a truly elite operator and most experienced center anywhere for this procedure ... in short you can't be any more prepared than you already are today!

I'm sure you are going to find this whole business isn't nearly so onerous, painful or scary as we all tend to project when the days become few, down to single digits, before one's index ablation. That's when I typically get a wave of calls from Afibbers here I've consulted with previously when it all boils down to the last few days prior to a first ABL.

That is quite naturally when such last minute 'What Ifs' often invade the mind with the same expected questions and concerns as you have brought up above ... and in other recent posts over the last week ... seeking further reassurance and clarification.

Regarding the benefit of the Vascade collagen plug, not only do you avoid needing a Foley catheter all together (a big plus for us guys in particular), but the reduction in 'still time' for your legs from 6hrs to 2hrs is made even less of an issue simply because that initial 2 hours of keeping your legs still occurs when there is a good deal of residual anesthesia still on-board and thus that initial two hours passes in a very quick dreamy heart beat during which time has little meaning. You will be up and walking around before you even know it, so no worries at all!

Best wishes NLAMA and you know how to reach me ...

Cheers!
Shannon

Quote
NotLyingAboutMyAfib
Susan - thanks - just hoping I can stick around long enough to see him become an adult.
Health wasn't a primary concern (but should have been) when we went to have a child.

I have a similar concern situation with my ablation, which is coincidentally scheduled in CA right after yours. Not apples to apples-but still a concern. Your concern is your son. Mine is who will care for my husband? All grown kids are out of state and country and with covid19, my son couldn’t come in to watch him like he did during my index ablation. It’s more difficult with covid19.

If it makes you feel any calmer- My Natale ablation I was not worried a bit. I was calm and went in with positive thoughts. My only negative experience was that my ablation ended at 8:30pm and I was not allowed to get up until 10am the next day. I had plugs-not 2 hours. No reason to remain in bed-no orders. I just had a zealous RN. So if a complaint of staying in bed was all I had after my ablation—you will be fine!

I'm eager to wake up from some nice propofol dreams and start griping about the 2 hours on my back because the alternative of not waking up again seems far less attractive.

Shan - I saved Dr N a lot of time by telling him you and the forum already educated me and helped set realistic expectations for the procedure.

propofol! I wish I had that. I got strong stuff that kept me in a twilight stupor for hours.

My life was debilitated by arrhythmia and experienced practically all the side affects of the anti-arrhythmic medication. So in 2011 had a Natale ablation. No medication post ablation other than aspirin. Natale recommended that I not resume my exercise program for approximately six weeks after the procedure. Today I am 73 and train 3 days per weeks.

I will say there was one major issue with the ablation......that damn catheter!!!!!!

So if that is no longer a requirement then there are no issues.


Steve
Spring, Tx.