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lkoneval, September 24,  2020  3:19pm EST

Multiple atrial arrhythmia's including afib,, have had 5 failed ablations to date, considering AV node ablation and pacemaker insertion

Hello,I am a 48 year old female.  I have, multiple atrial arrhythmias, lupus, myasthenia gravis, celiac disease, and hashimoto thyroiditis.  Beginning in 1999 I developed AVNRT/SVT.  As the years went on I also suffered from Inappropriate sinus tachycardia, Afib, aflutter, atrial tachycardia, Junctional rhythm.  I had my first ablation in 2009 for SVT.  I was good for awhile but it came back. I had an ablation for inappropriate sinus tachycardia in 2010 that worked for a short time only. In 2012 I had ablation for aflutter and afib. I was placed on several anti arrhythmics over the years and have failed just about all of them.  I had 2 additional ablations in 2016 and 2017. Of course, I went into afib again in 2019.  I was started on sotalol and did well.  Unfortunatley, I was found to have myasthenia gravis that may have been made worse by the sotalol so  it was stopped.  I am not a candidate for tikosyn because I am on plaquenil for lupus.  I am too youg for amiodarone.  I am currently on Digoxin but it is not working real good. My doctor is now suggesting either another EP study and ablation or possibly an AV node ablation and pacemaker.  I am against another pulmonary vein isolation procedure/ablation and am leaning toward the AV node ablation and pacemaker.  I am reading some terrible things about AV node ablation and I am hoping someone on this site may have some information to help me.  I appreciate any help in advance.  

5 Replies
  • Thumper2
    Thumper2, September 25,  2020  8:48am EST

    Ikoneval, I'm sorry to read of the multiple health issues you have.  I want to speak positively about AV node ablation, when it is done as part of a technique called PDHBP (Permanent Direct His Bundle Pacing).  I had this done at the Guthrie Clinic in Sayre, PA, in Oct. 2015, by Dr. Pramod Deshmukh.   I had been in permanent Afib for 10 years, managed  by various meds.  But then exams showed worsening mitral and tricuspid valve regurgitation, and atrial ***********. I had several cardioversions, which did not  restore sinus rhythm.. I had a PVI and a pacemaker installed for rate control.  Unfortunately, the PVI did not lessen the Afib.  So I was left with two negative symptoms:  a feeling of breathlessness when walking (even on a level surface) and constant fatigue .   I was 78, in good health otherwise, and did not want to spend the remainder of my life napping.  I went to the Cleveland Clinic (a marvelous experience!) for a second opinion, but it only confirmed the Guthrie results.  Another PVI was not an option because of my enlarged atria.  Even open-heart surgery to repair the valves would not be a good option because the underlying cause (Afib) would still be there afterward.

    After consulting with a cardiac surgeon and my electrophysiologist at Guthrie, we agreed on the PDHBP procedure.  I now have a rhythm-control pacemaker which paces my two ventricles synchronously.  It has made a wonderful difference in how I feel!  The breathless feeling is mostly gone, and I have much more energy (so long as I keep up my exercise). I am still in Afib, even though it doesn't show up now, on a simple wrist monitor.   The procedure is not a cure-all -- I am pacemaker dependent and will be on coumadin for the rest of my life.  But it has worked very well for the last 5 years.   This is my story.  You might want to get a second opinion from someone like Dr. Andrea Natale or another EP who specializes in ablations.  I'm glad you are planning ahead!  I agree with DSAVOIE1953---plan to attend the rapidly upcoming Global Online Conference.   Let us know how things go!

    Thumper2 (Judy)

  • lkoneval
    lkoneval, September 25,  2020  9:20am EST

    Thank you so much for the information.  I will be doing some research on PDHBP! I appreciate your help!

  • dsavoie1953
    dsavoie1953, September 25,  2020  10:03am EST

    Keep the Faith - Research - Never Give Up or Give In! But be smart and choose your doctors wisely - you deserve the best Medical attention you pay for! Never settle!  Thumper2 is extremely well verse and knowledgeable you can trust her input! 

  • lkoneval
    lkoneval, September 25,  2020  10:09am EST

    Thank you so much!

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