AVNRT

[andreasuperstar]

hi I was diagnosed with SVT in my 20’s , been fine until this year and now very symptomatic and they think I have AVNRT. Having loop recorder fitted soon. Does anyone have any advice on this diagnosis? I keep having tachycardia since a major SVt episode in January . I’m so scared . My young daughter 11 was diagnosed with intermittent Wolf Parkinson White syndrome and has had one failed ablation . I have double the worry 😵‍💫

[Deejay62]

Hi I’ve suffered with SVT all my life. I have other heart issues too. They had thought at one stage when I was young that I had wolf Parkinson white syndrome, but eventually they said no it’s not that. Most of these arrhythmias are not dangerous as such they’re just annoying and stress makes them worse, but stressing, anxiety etc are natural when you’re facing the unknown.

Once you have the loop recorder fitted it should tell them more of what’s going on. I’ve never had one fitted, but hopefully someone can come along and help you with that. I had a pacemaker then an ablation of my AVnode because Atrial tachycardia was coming out of it. Years down the line I now have a pacemaker defibrillator fitted.

I don’t know much about AVNRT. Maybe someone who does will come along.

You can also get support for the situation with your daughter. Just post and ask and someone should come along and help you there too

All the best Diane.

[andreasuperstar in reply to Deejay62]

Thank you for your kind reply , I see the EP 8/12 xx hope you’re feeling well . Did the ablation cause the need for the pacemaker or your condition ? They’ve suggested I might need an ablation and my daughter has already had one failed ablation with her WPW 🙄

[Deejay62 in reply to andreasuperstar]

I had 3 failed ablations. Every time they ablate after a while it would spring up elsewhere. The third time they discovered it was coming out of the AVnode so they decided to do a pace and ablate which cut off my Avnode and I was fitted with a 3 lead pacemaker. If it wasn’t coming out of my AVnode I wouldn’t of needed a pacemaker at that time. But I have dilated cardiomyopathy which is in my family, and that can progress to heart failure. So even still I would of ended up with some sort of device.

[andreasuperstar in reply to Deejay62]

Oh my goodness you’ve been through it ❤️

[Deejay62]

They have an arrhythmia alliance group on here maybe you should join it and you will receive more support.

[Deejay62 in reply to Deejay62]

I’ve made it to 62. Your daughter and you are still young and EPs are getting more and more skilled. I was diagnosed 20 yrs ago. If you get stressed speak to your doctor also because there’s help out there for counselling if you need it. Don’t be all alone. I feel you will get more support on the other group.

[wischo]

AVNRT is not considered a life threatning condition and your SVTs can be controlled with beta blockers or other arrhythmia medication. All failing a cathater ablation may be considered.

[Palpman]

AVNRT is a common Atrial Flutter. It is the easiest to ablate by scarring the return pathway at the AV Node. I was done and dusted in 15 minutes and felt nothing even though I was not given any sedation.

[andreasuperstar in reply to Palpman]

I thought it was an SVT?

[Palpman in reply to andreasuperstar]

Yes. AV Node Re-entry Tachycardia is a form of SVT called Aflutter but is not Afib.

[Deejay62 in reply to Palpman]

Palpman sorry I mentioned I have afib as well as SVT so I’m on anticoagulant andreasuperstar just mentioned she as AVNRT and her daughter as WPWS

[Carolx]

Hello

I have AVNRT, Dilated Cardiomyopathy and a loop recorder implant.

I had an ablation 9 days ago. I have had lots of palpitations, ectopics and an erratic heart beat since having it done. I feel so down and disappointed. I believe it takes a good 3 months for the heart to settle down and I won’t know if it’s been a success until then.

The loop recorder implant procedure was very simple. It wasn’t painful during or after. It didn’t take long for them to fit it and I drove home after. I have a tiny scar on my left breast, kinda on my cleavage, so barely noticeable.

I am on Ramipril and Diltiazem. I have suffered with palpitations all my life. I’m now 55. They got worse when I reached 50 (peri menopause).

The last 9 days have been quite up n down for me. I guess I was expecting miracles instantly.

I’m praying it has worked but going by the amount of palpitations I’m having every day, I’m not hopeful.

The ablation itself was a very negative experience for me. See my latest post. I must add very rare though. I don’t want to put you off. I would definitely have another one if needed, but making sure I was sedated and administered painkillers.

I really hope I don’t need another one and my heart will settle down in the coming days.

I know how scared you feel. It’s not pleasant is it. I hate every single episode and feel quite exhausted after. I always think my heart will never go back into NSR, it does of course, but I always get that tiny bit of panic set in.

I was hoping to go back to work on Tuesday.

I’ll see how I feel Monday. I’m having palpitations and skipped beats as I type. I just want to sleep.

I hope you can get some answers from the loop recorder. It has told my cardiac team a huge amount at St Thomas’. I have an app on my phone and I have to add symptoms and submit as I’m having them.

Good luck on your journey.

[andreasuperstar in reply to Carolx]

Thank you so much for your very in depth response . I was diagnosed with ectopics and SVT in my 20’s and was ok until two years ago . Then it’s one thing after another and very scary . My daughter now 11 had a failed ablation age 9 for WPW and will no doubt face another attempt . From what I’ve heard on other forums, ablation number 2 tends to offer the most success , some lucky ones success on the first ones and for others countless ablations . It seems extra similar yet different with triggers , extent of symptoms and what approaches work for some do t work for all . It’s a very confusing and lonely journey xxx thank you for sharing yours and I truly wish your ablation proves successful ❤️