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Recommendations on EP

Posted by megansims @megansims, Jul 22 1:16pm

I have a long and frustrating history of arrhythmia. In May of 2021, I had an ablation for paroxysmal SVT. They discovered that it was Atrial Tachycardia, they also found incidental afib and flutter. They ablated the flutter as well. All went well until December 2022 when the paroxysmal SVT came back.

Short story long, I ended up with a 30% burden of PACs and 1500 runs of Paroxysmal Atrial Tachycardia on the monitor for 7 days. I had an attempted ablation and they couldn't induce. I had another ablation and they couldn't induce, plus I got Pericarditis. I had a whole list of failed medications. Finally, in May of this year, I had another ablation and they ablated a huge area in the right atrium that was causing SVT. They couldn't get to the other area that was in the left atrium.

So now I still have a 30% daily burden of PACs and many, many runs of short paroxysmal Atrial Tachycardia (SVT). I also have some Inappropriate Sinus Tachycardia. I am feeling like my case is complicated enough to warrant a specialist and have requested a Mayo consult. I am looking at three different doctors to request. Dr Kappa, Dr Bradley, and Dr Killu all seem to have the expertise for complex, difficult arrhythmias.

I am looking for recommendations and/or reviews of any of these providers and/or your experience with an EP Study/Ablation at Mayo in Rochester.

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

gloaming | @gloaming | Jul 22 3:19pm

Hi, Megan, it's 'me'. I can't help, but I'm glad you elected to register here. It may take a few hours or a day or two, but this is an active site, and you'll surely get someone to chime in. Also, the moderators here are very active and will try to link you to discussions or thread participants whom they recall have discussed these matters.

Good luck! I'm pulling for you because I am acutely aware of your circumstances. I know it has been a living hell for you.

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jc76 | @jc76 | Jul 23 6:10am

@megansims
Can't comment on Mayo Rochester other than pass on all the feedback I have seen on this clinic is outstanding.

I can comment on Mayo Jacksonville. They have an outstanding PACE Clinic and Electrophysiology department. My EP is the Director of Electrophysiology and Pace Clinic. I have had ablation in RV that worked to stop PVCS in the RV. Now have a lot of PVCS in LV (were always there to some extent but not this bad).

EP decided to try medications before doing a LV ablation. The medication did help by about 50% improvement in reducing PVCs. I think sometimes you and your EP have to experiment with medications to see which one work for you. Some medications will work for some and for some no. We are all different and bodies all different so not surprising medications work for some and for some no.

I would highly recommend based on your post that you go to Mayo Rochester. If anything like Mayo Jacksonville you will be highly impressed and in good hands.

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1 reply
megansims | @megansims | Jul 23 10:15am
In reply to @jc76 "@megansims Can't comment on Mayo Rochester other than pass on all the feedback I have seen..." + (show)
@jc76

@megansims
Can't comment on Mayo Rochester other than pass on all the feedback I have seen on this clinic is outstanding.

I can comment on Mayo Jacksonville. They have an outstanding PACE Clinic and Electrophysiology department. My EP is the Director of Electrophysiology and Pace Clinic. I have had ablation in RV that worked to stop PVCS in the RV. Now have a lot of PVCS in LV (were always there to some extent but not this bad).

EP decided to try medications before doing a LV ablation. The medication did help by about 50% improvement in reducing PVCs. I think sometimes you and your EP have to experiment with medications to see which one work for you. Some medications will work for some and for some no. We are all different and bodies all different so not surprising medications work for some and for some no.

I would highly recommend based on your post that you go to Mayo Rochester. If anything like Mayo Jacksonville you will be highly impressed and in good hands.

Jump to this post

Thank you for the reply. I have officially signed off of meds. We tried a list of at least ten, and I ended go with a rare reaction to Verapamil, got vasculitis. So now I cannot take any more Calcium Channel Blockers. It was super scary. I'm not going to take anymore. But I also don't want to live with he burden and symptoms. Thanks again for the reply.

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1 reply
saganjames | @saganjames | Jul 24 5:45am

Doctor Byron Boulton at WakeMed in Raleigh is terrific. Over 2 years ago, when I was 78, he repaired my mitral valve, did ablation, and did LAAC. No problems since. Off all meds.
https://www.wakemed.org/provider/bryon-james-boulton-md-facs-cardiovascular-surgery

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lindy9 | @lindy9 | Jul 27 1:21pm
In reply to @megansims "Thank you for the reply. I have officially signed off of meds. We tried a list..." + (show)
@megansims

Thank you for the reply. I have officially signed off of meds. We tried a list of at least ten, and I ended go with a rare reaction to Verapamil, got vasculitis. So now I cannot take any more Calcium Channel Blockers. It was super scary. I'm not going to take anymore. But I also don't want to live with he burden and symptoms. Thanks again for the reply.

Jump to this post

I have mentioned on some of the other blogs, but I never took meds and had scary episodes for years. Long story short, I am EXTREMELY sensitive to any caffeine, and it was the CAUSE.
Do you drink ANY coffee, colas, Mountain Dew (which has more caffeine than cola), eat chocolate??

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