ARVD Treatment

[happy feet]

Is ARVD a condition that can be corrected/treated?  If so, what are the treatment options and what conditions/parameters dictate or prescribe the treatment choice?  Should mapping and ablation be attempted before deferring to an implantable defibrilator?

[fmuellerfat46]

My husband was diagnosed with ARVD last May.  He had a single lead ICD implanted in July, was taken off of Sotalol.  Received a shock during exercise and was placed on low dose of Sotalol.  Had another setback when he went into VTach and passed out (ICD didn't shock since it was set too high).  His ICD was upgraded to a two lead, they did an Ablation and doubled his Sotalol just two weeks ago.  It's all about fine tuning and control.  Not sure what his scarring is from because he doesn't meet most of the criteria for ARVD - (he was diagnosed at age 59, no family history).  The VTach is very unpredictable, but also very controllable.  Feel free to write if you'd like to discuss this further.  It's hard to find someone who is in a similar situation.  Good luck!

[Aunt Grammy]

I was diagnosed with ARVD back in 2001 after initially being seen for chest pain, tachycardia, and SOB.  After several tests for those symptoms, I began having syncope and of course more tests ensued and I was diagnosed with ARVD and soon had an ICD/pacemaker implanted.   For the first year I was on 2 different beta blockers and continued to work at a very stressful job, and soon went into congestive heart failure and my defibrillator went off on several occasions.  I was then placed on sotalol twice a day and had to take a medical leave from work due to the stress.  After about 6 weeks my heart rate continued to go up and my sotalol was increased to 120mg 3 times a day along with a myriad of other medications. I then took long term disability from work per my doctors orders, apparently stress is as hard or harder on ARVD as exercise.  I did well for a few months, other than the frequent dizziness and SOB and weakness, due in part to side effects of medications and in part, symptoms of ARVD.  I then began going in and out of congestive heart failure and as a result my defibrillator was going off way too frequently for my liking.  In the first 2 years after my implant my defibrillator probably went off about a dozen times.  Since then I became fairly stable, my heart rate was staying in the 80's, but the dizziness, SOB, and weakness continued, as did my congestive heart failure.  My defibrillator went off very infrequently maybe once every 6 months or so.  I have had syncopal episodes, though my defibrillator does not go off each time.  My major concern with my diagnosis is how to tell how much my disease is progressing and at what rate.  I have echocardiograms every 6 months and each time the results are different.  I now have mitral valve regurgitation and tricuspid valve prolapse as well as decreased ejection fraction, but they cannot say how much my disease is progressing because I can't have an MRI which would show the level of progression.  I still have tachycardia infrequently, palpitations, dizziness, syncope,fatigue,shortness of breath, weakness, and memory loss.  My congestive heart failure comes and goes but the symptoms I described above are always there.  I wonder how many of you out there with the diagnosis of ARVD are bothered by any of the same symptoms and how bothersome they are to you and do any of you have any information on how to tell if your disease is progressing.  I would appreciate any information anyone may have on the subject.    Thank You.

[Aunt Grammy]

I was diagnosed with ARVD back in 2001 after initially being seen for chest pain, tachycardia, and SOB.  After several tests for those symptoms, I began having syncope and of course more tests ensued and I was diagnosed with ARVD and soon had an ICD/pacemaker implanted.   For the first year I was on 2 different beta blockers and continued to work at a very stressful job, and soon went into congestive heart failure and my defibrillator went off on several occasions.  I was then placed on sotalol twice a day and had to take a medical leave from work due to the stress.  After about 6 weeks my heart rate continued to go up and my sotalol was increased to 120mg 3 times a day along with a myriad of other medications. I then took long term disability from work per my doctors orders, apparently stress is as hard or harder on ARVD as exercise.  I did well for a few months, other than the frequent dizziness and SOB and weakness, due in part to side effects of medications and in part, symptoms of ARVD.  I then began going in and out of congestive heart failure and as a result my defibrillator was going off way too frequently for my liking.  In the first 2 years after my implant my defibrillator probably went off about a dozen times.  Since then I became fairly stable, my heart rate was staying in the 80's, but the dizziness, SOB, and weakness continued, as did my congestive heart failure.  My defibrillator went off very infrequently maybe once every 6 months or so.  I have had syncopal episodes, though my defibrillator does not go off each time.  My major concern with my diagnosis is how to tell how much my disease is progressing and at what rate.  I have echocardiograms every 6 months and each time the results are different.  I now have mitral valve regurgitation and tricuspid valve prolapse as well as decreased ejection fraction, but they cannot say how much my disease is progressing because I can't have an MRI which would show the level of progression.  I still have tachycardia infrequently, palpitations, dizziness, syncope,fatigue,shortness of breath, weakness, and memory loss.  My congestive heart failure comes and goes but the symptoms I described above are always there.  I wonder how many of you out there with the diagnosis of ARVD are bothered by any of the same symptoms and how bothersome they are to you and do any of you have any information on how to tell if your disease is progressing.  I would appreciate any information anyone may have on the subject.    Thank You.

[Aunt Grammy]

I was diagnosed with ARVD back in 2001 after initially being seen for chest pain, tachycardia, and SOB.  After several tests for those symptoms, I began having syncope and of course more tests ensued and I was diagnosed with ARVD and soon had an ICD/pacemaker implanted.   For the first year I was on 2 different beta blockers and continued to work at a very stressful job, and soon went into congestive heart failure and my defibrillator went off on several occasions.  I was then placed on sotalol twice a day and had to take a medical leave from work due to the stress.  After about 6 weeks my heart rate continued to go up and my sotalol was increased to 120mg 3 times a day along with a myriad of other medications. I then took long term disability from work per my doctors orders, apparently stress is as hard or harder on ARVD as exercise.  I did well for a few months, other than the frequent dizziness and SOB and weakness, due in part to side effects of medications and in part, symptoms of ARVD.  I then began going in and out of congestive heart failure and as a result my defibrillator was going off way too frequently for my liking.  In the first 2 years after my implant my defibrillator probably went off about a dozen times.  Since then I became fairly stable, my heart rate was staying in the 80's, but the dizziness, SOB, and weakness continued, as did my congestive heart failure.  My defibrillator went off very infrequently maybe once every 6 months or so.  I have had syncopal episodes, though my defibrillator does not go off each time.  My major concern with my diagnosis is how to tell how much my disease is progressing and at what rate.  I have echocardiograms every 6 months and each time the results are different.  I now have mitral valve regurgitation and tricuspid valve prolapse as well as decreased ejection fraction, but they cannot say how much my disease is progressing because I can't have an MRI which would show the level of progression.  I still have tachycardia infrequently, palpitations, dizziness, syncope,fatigue,shortness of breath, weakness, and memory loss.  My congestive heart failure comes and goes but the symptoms I described above are always there.  I wonder how many of you out there with the diagnosis of ARVD are bothered by any of the same symptoms and how bothersome they are to you and do any of you have any information on how to tell if your disease is progressing.  I would appreciate any information anyone may have on the subject.    Thank You.

[CCF-M.D.-MJM]

Hello,

ARVD is a rare (about 1:5000) condition that affects the right ventricle more often then the left ventricle.  It cannot be directly corrected, but the treatment is the standard heart failure regiment and the prescription to stop vigorous exercise.  It is reasonble to start a beta blocker and ACE Inhibitor, although no large scale trial has investigated their benefit in this condition.

If you have ARVD and ventricular tachycardia, it is wise to place a defibrillator.  A conservative approach would dictate that an ablation should be attempted if there are recurrent shocks for VT.  A more aggressive approach would be to ablate the VT soon after placing the defibrillator.  If the thought is that you need an ablation for VT, I would recommend a defibrillator as well.

I hope this answers your questions.  Good luck and thanks for posting.