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. ❤️
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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.
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.
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!
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.
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.
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.
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.
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.
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. ❤️😊
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!
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.
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!
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.
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
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.
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.
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 🤞🤞🤞
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.
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.
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.
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.
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.
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.
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