Ablation was a bust

[lovetogarden]

The EP study today found the source of my tachycardia. That was a success. But ablating it would have damaged my phrenic nerve. That was a fail. The ablation zone was wrapped around by the phrenic nerve. So after a 4 hour procedure, wide awake, they sent me to a recovery unit for a few hours, the home.

Thank goodness I was able to leave. The storm that is just starting would have left me in the hospital for 2 overnights. Though I would have been ok with that if they’d been able to ablate. 😢

The EP team was terrific. A new dr to me, so thorough, respectful, and informative. He tried so hard to find a way, even called in another EP for a consult. Being awake, I started to realize it wasn’t going to happen at around hour 3.

Thanks to all of you for your support and encouragement. Onward, not going to let this stop me from traveling and doing the things I want to do. ❤️

[Gumbie_Cat]

Hope that they can do something to help with the tachycardia - your positive attitude will really help!

[lovetogarden in reply to Gumbie_Cat]

Thanks. will be exploring more options, if there are any. continuing with meds for now.

[jeanjeannie50]

Sorry to hear that they weren't able to help you. Did you have no sedation whatsoever?

Jean

[lovetogarden in reply to jeanjeannie50]

They gave me a bit of something Valium-like at the start, just to take the edge off. Said they were going to then use conscious sedation, but never did. I was both awake and remember every minute of it. in the past, with conscious sedation, I’ve never remembered a thing. No terrible pain, a bit uncomfortable as they manipulated the sheaths and catheters. Was all very interesting actually.

[sassy59]

A disappointment but you have a very positive outlook. Good luck to you.

[lovetogarden in reply to sassy59]

thanks, I’m trying to be positive!

[BobD Volunteer]

Great attitude!

[lovetogarden in reply to BobD]

Thanks BobD, I’m trying to be positive. But still investigating any option that might help.

[mjames1]

Sorry it didn't work out. Hopefully they will be able to take care of it with the upcoming pulse field ablation (pfa) technology that has a better safety profile than rfa or cryo in terms of the phrenic nerve.

Jim

[lovetogarden in reply to mjames1]

hoe the PFA might be an option down the road.

[MikeThePike in reply to mjames1]

I was thinking the same.

[lovetogarden in reply to MikeThePike]

yes, that tech does seem to hold out hope for many of us. Let’s hope it gets approved more widely and safely soon.

[Frances123]

So sorry it didn’t happen. Wow, you are one strong lady and so positive. Love your attitude. x

[lovetogarden in reply to Frances123]

thank you, my positive attitude is a bit wobbly…… 😀

[Rainfern]

Sorry to hear the ablation not possible this time, it sounds like you had a wonderful team and they did everything they could. You will find other ways forward, and meanwhile keep on being you, and glad you got home safely!

[lovetogarden in reply to Rainfern]

thank you, yes, they were a great team and were very thorough. And cautious, I’m glad they didn’t take chances and mess with damaging nerves.

[Singwell]

Wow you are brave! I was glad to have gone away with the fairies after 44 minutes of my 1st ablation. Also a 4 hour stint that didn't really work. Hope you get some options for ongoing management. And stay warm - the weather is nuts even over here.

[lovetogarden in reply to Singwell]

oh, so sorry that your procedure didn’t work either. Such fussy hearts we all have! 😢

[Singwell in reply to lovetogarden]

Thank you. It was because I was sedated only. My body responded to the pain apparently even when I wasn't conscious. The 2nd ablation was under general anaesthetic and therefore worked better.

[lovetogarden in reply to Singwell]

oh, that’s great! Glad the 2nd ablation worked better.

[JOY2THEWORLD49]

Hi

Would the surgeon have seen it in an an ECHO or MRI?

cheers JOY

[lovetogarden in reply to JOY2THEWORLD49]

I don’t know if that would have revealed anything? They couldn’t have known for sure where the tachycardia was coming from until they got inside and started the EP study. They found the location quickly, just wasn’t a location that could be safely ablated.

[BRHow]

sounds like your Doc wasn’t confident. I would highly recommend getting a 2nd opinion by a Super Star Doc.

[lovetogarden in reply to BRHow]

He was very cautious and even called in a really senior member of the team for a consult. He also worked really hard to find any spot that they could safely ablate. But there was no way to ablate anything useful without also injuring the right phrenic nerve. And that’s not an outcome anyone wants. There may be ways to isolate that nerve, but most of the medical literature to date shows that the methods are not yet totally reliable.

[CDreamer in reply to lovetogarden]

Not worth chancing it but worth having the investigation as at least you know what you are dealing with. Well done.

[lovetogarden in reply to CDreamer]

thank you CDreamer. Exactly how I feel. Glad they didn’t take chances, but grateful to now know exactly what areas of my heart are causing the problems.

[DawnTX in reply to lovetogarden]

I think I mentioned to you previously that this is why my EP would not do another ablation. It is just too hard to math, and if you are off even a millimeter, it won’t work. My heart is already scarred enough he said. Monday will be three weeks with my pacemaker. I had a couple of days that made me nervous but I think you know after I spoke with the nurse I felt much better about everything. Don’t be afraid to ask questions it’s your heart you only get one. When something is explained, it’s not so scary. Big hugs. I told you in October my cardioversion failed after three shocks. Everything was canceled including the medicine. They were going to put me on and keep me in ICU for five doses. When my doctor told me what had happened, I cried. He told me we will talk about what’s next, and I knew he was already planning how to help me. He did. We are going to be OK you know 😊🙏🏻 From what you’ve told me, your doctor is brilliant, and sounds quite a bit like mine. I have no regrets about my decision of going with the special pacemaker. I am already off one medication and when I go back in to see the doctor April 5 they are going to set my pacemaker to 70 as it is 80 for a heart rate right now. The goal over the next few months is to get it to 60. I feel that I am doing quite well so far. Just remember new things have been discovered every day. ❤️😊

[lovetogarden in reply to DawnTX]

Thank you Dawn, I’m so sorry you had a similarly difficult time with all this. But it does sound like you have a wonderful EP. And I’m so happy for you that the pace and ablate is working well for you!! Yay! Who knows, it might be an option for me at some point too. Like you, I shed a few tears. 😢 and like you, I do trust and like my EP. I know that he has my best interests at heart and has never been anything but straightforward with me. Appointment next month to discuss options. Good luck with your next appt!

[DawnTX in reply to lovetogarden]

I will be watching. Please share your options if you will. Your doctor sounds very much like mine someone you feel safe with. I will not be surprised if it is suggested you also pace and ablate. to me, it means early quality of life instead of trying different things over and over again. I will be 71 in August. I don’t want to waste one more day feeling like I am an experiment. There are no promises but there is hope.

[Mumursa]

Reading your post has brought tears to my eyes. I admire your strength. Hold your nerve and there will be a way to sort it 💪 👍👍💪

[lovetogarden in reply to Mumursa]

Oh, thanks. Your response made me cry. ❤️ I have shed a few tears. I’m not as sanguine about all this as I’m trying to sound.

[Mumursa in reply to lovetogarden]

I’m really sorry, I didn’t mean to make you cry!!!

I was thinking after I posted, I should have mentioned that my third ablation was a hybrid approach including minimally invasive surgery around the back of the heart. This was done because my EP couldn’t get to the sources of my af internally and said he would bring in a surgeon.

I don’t know anything about the phrenic nerve, and I don’t know if mini maze surgery would suit your needs but it’s worth asking.

I hope you can recuperate and fit in some diversionary activities before tackling it again!

[lovetogarden in reply to Mumursa]

no worries, it was good tears. ❤️ Sorry to hear how much you went through to get your afib fixed! Having the mini maze surgery is pretty involved. So glad it helped. It’s not an option for me, this is strictly tachycardia at this point.

[DawnTX in reply to Mumursa]

Your ablation sounds very similar to mine was in April. It was the vein of Marshall as well as two other areas. I hope that you had more luck than I did because I took a downward spiral. Less than three weeks ago I got a special pacemaker. Right now I would say it’s the best thing I could’ve picked for myself. I am not 100%. It could take up to six months, but right now I am very happy with how I feel already Best of luck going forward

[Mumursa in reply to DawnTX]

I wish you all the best too. You’ve been through a lot and I’m sure your heart needs time and TLC to recover - sounds like the pacemaker will help with that.

I didn’t have the vein of Marshall done but I did have the appendage clamped which I think did some good. I still have af, it’s not particularly fast, and generally just a bit irregular. Amiodarone is the only thing that’s ever worked for me but I don’t want to spend my life on that so I’m just hoping my heart is still recovering too.

[DawnTX in reply to Mumursa]

I wish you well also. I had the AV node done with the pacemaker. A fib does not go away even with a pacemaker, but the difference is without the AV node, etc.. It no longer gives the orders the pacemaker does that. I still have my atypical flutter because the pacemaker cannot help that, but it never really bothered me that I was aware of. I have felt it a few times but mostly during the first week the pacemaker is designed so that your heart rate will go up when you were doing things just like it would naturally, so my aunt actually hit 105 the other day and scared the heck out of me until I knew this. I will go in on 5 April, and the plan is to adjust my pacemaker down to 70 for a heart rate Once my body gets used to that they will try 60. Because I was in the 150s even 80 was low for me but now I am fine. My metropolol was cut to once a day and I was taken off digoxin. Most likely I will be on Xarelto, the rest of my life or if somethings similar. I am still very tired and could go to sleep right now. I’m beginning to think it’s the metropolol. All I know is how much better I feel already. I have back damage that needs to be operated on and should’ve been when I first got to Texas. Because my a fib returned I have not been able to get it done. Right now I think it’s more of my back than anything keeping me from being a little more active. just like an old car I seem to need more than one part replaced lol

I am glad you’re doing well. Please don’t forget us here. Let us know how you are doing.

[Mumursa in reply to DawnTX]

That all sounds like steady progress in the right direction for your heart.

I sympathise with you with your back. I can’t tell if it’s more my heart or my knees that stop me getting upstairs as quickly as I used to. Hopefully you’ll be able to get your back sorted out soon 🤞🤞🤞

[DawnTX in reply to Mumursa]

It may be fall before I can get that done. It depends on how my progress goes. I might be allowed to get it sooner but I want to feel as good as I can before I do it. We had some serious rain the other day and before it arrived. Oh, did I hurt. At least now I know what is causing my pain. I had been unable to walk even across the kitchen because of the pain. Today is my best day yet, so to be able to do that without my back issue would be amazing. I had both sides of my neck done, and this was to be the final area. Again the word ablation lol I had six done in my neck on both sides, and they have held steady. Now the laminectomy and I can be the bionic old lady series too. Lol.

[Mumursa in reply to DawnTX]

I had to look that up. Sounds scary! It’s probably a good thing that you’ll have to wait a few months and give yourself time to recover.

I hope it all goes well for you 😊

[DKBX]

Wow. You’ve been through the wringer there. Hang in there. Sending healing prayers in hopes for a solution.

[lovetogarden in reply to DKBX]

thanks. I’ve awarded myself some gold stars for making it through those very long 4 hours! ⭐️

[Snowgirl65]

You positive outlook is something to admire! I would think good things will come from it. Here's hoping they find a solution to your tachycardia -- best wishes.

[lovetogarden in reply to Snowgirl65]

thank you, trying to be positive. I know there are so many folks far worse off than me, so I’m grateful to be alive and in generally good health. Still doesn’t mean I’m not terribly disappointed this didn’t work.

[Daisyblu]

A disappointing result but hopefully it is a case of one step back then two forward. Hang in there and keep that positive frame of mind!

[lovetogarden in reply to Daisyblu]

thank you. Trying to stay positive and hope for other solutions as time goes by.

[2219overtimego]

I had the convergent procedure this past week. It is primarily an ablation to the outside of the heart. It was a very invasive procedure and much pain but if it works I can get off a bunch of meds and enjoy the remainder of my life.

[lovetogarden in reply to 2219overtimego]

That is quite a procedure to go through, but absolutely worth it if it gets you off the meds! Hoping you heal quickly and all is resolved!

[LPE44]

huge {{hugs}}

[lovetogarden in reply to LPE44]

😀❤️

[SeanJax]

go see Dr. Hunter then. Enough of incompetent ep. What the fake story of rogue sources wrapped around phrenic nerve. Competent ep knows how to ablate regardless of the vincinity of the phrenic nerve.

[lovetogarden in reply to SeanJax]

Wow. Suggesting that my EPs were lying to me is incredibly upsetting, unnecessary and frankly cruel. Your advice could have been conveyed in a helpful way instead.

Focal tachycardia ablations are very different beast than afib ablations. I won’t go into all my personal details, but there was no way to prevent phrenic nerve damage in this situation. I was awake through the whole procedure, I understood completely what was going on. There were no lies.

There are plenty of articles in the medical research literature about attempts to isolate the right phrenic nerve in this sort of procedure, some successful some not. I’m grateful to my doctors for not causing any damage and that I’m able to breathe freely today.