"I am concerned because I have 3 kids and if I do have it--I want them to be tested"
Marie, have your children tested!!!
here's some info if you haven't seen the info: www.arvd.com
http://www.arvd.com/diff_diagnosis.html
I would ask for a 2nd or 3rd opinion, you can't be too careful with it and you need to get an ICD if you do have it.
Thanks for all of your responses. So glad to find this forum. My MRI indicated Left ventricle: mild global hypokinesis with small focal area of severe hypo-akinesis involving mid inferior lateral wall. EF 50%
Right Ventricle: EF 40% Mild global hypokinesis. Large area of more severe hypo-kinesis involving the basal to mid lateral free wall of the right ventricle. There is also a small focal area of dyskinesis involving the RV apex. Wall thickness appears normal.
Evidence of myocardial fibrosis involving a small area of the mid inferolateral left ventricle.
The findings of a reduced ejection fraction and wall motion abnormalities involving the right ventricle do meet a major criteria for arrhthmogenic right ventricular cardiomyopathy.
The findings of a wall motion abnormality involving the inferior lateral left ventricle along with delayed hyper enhancement are suggestive of prior viral myocardial injury to this segment.
An EP study had been done and they were able to induce a non-sustained ventricular arrythmia and atrial tachycardia but not a sustained one.
What is the deciding factor regarding whether to implant an IcD vs using medications?
Sorry for the long post :-(
I think there are several criteria for the ARVD diagnosis, frequent PVCs and runs are just one. Seems like you are really bothered by premature beats, but most of them are actually PACs. Most likely some of the PVCs are misregistrated PACs too, I doubt your doctor evaluated every single one.
Like previous mentioned, you need to be evaluated by a specialist, cardiac MRI or echo are useful tests to evaluate ARVD. To verify the diagnosis, I think they take biopsy of the right ventricle.
Sorry it does sound like we may be on the same path. I've had problems since I was 9 -arrhythmia's and fainting, but been told nothing was wrong until I was 42 during a EP Study When my EP first mentioned ARVD after surgery, he said he didn't want to 'saddle' me with a dx like that at such a young age - I didn't care I just wanted a NAME and didn't think it would be so difficult to get a name for my long runs of polymorphic VT and malignant pvc's.
Now, I'm 44 and have 4 children, 2 grown 2 younger and my oldest daughter had some symptoms when she was younger that I did such as arrhythmia's and fainting. My oldest son started having some CP, SOB and fainted during PT at work; he's in the air force so he just got back up and then went to rest later and called me.
It's been a difficult 2 years trying to get answers, my first cardiologist said MRI's much like echo's are subjective to the interpreter as your EP says, so that leads to alot of misdiagnosing. I had a pacemaker/icd implanted after my EP study which is great but I will need to know.
My current cardiologist said the exact same thing and is currently going through all of my files with a fine tooth comb and an expert in the field of MRI's and ARVD, so I'm hoping for some new answers when I go back for my next checkup. He says it certainly looks like ARVD as my first cardio did and EP did agree but with my MRI being inconclusive due to wall motion degredation and I couldn't lay still or breathe in much.
If he doesn't come up with answers, I'll be going to Mayo Clinic or Cleveland Clinic who specialize in genetic things - my children deserve answers and to know if they have it so they don't have to go through what I have.
Please let me know how you're doing and what happens =)
If you haven't read it you might check out the Johns Hopkins web page for ARVD.
Thank you for responding. I started with tests because of having chest pains that were radiating to my jaw. That led my Dr. to do an ekg that came back abnormal. I have had an MRI done that came back with suspicion for ARVD. (the reading on it said "major criteria for arvd"--but the EP (am seeing one) said that he wasn't in agreement with the diagnosis of who interpreted the MRI--. I had an SAEKG, that came back abnormal with late potentials. So, needless to say I feel a little like I'm on a merry go round. Lisa-sounds like you and I may be on the same path? I am considering going to John's Hopkins. I just want to know YES OR NO--but from what I've read it isn't always as simple as that. I am older--48--and I know that being diagnosed at my age isn't the 'norm'--so I think that also keeps my EP from making a diagnosis. I am concerned because I have 3 kids and if I do have it--I want them to be tested. What all have you have done and why are they hesitant to diagnose you one way or the other?
I'm curious why you were first being evaluated for ARVD? what lead them to test for it?
If you haven't, you should see an EP and have a cardiac MRI that will check for ARVD and other infiltrative diseases of the heart. EKG, Holter and Echo may not give the complete info they need to diagnose you.
I had a cardiac MRI when they first suspected ARVD after I went into long sustained runs of polymorphic VT during an EP study for very frequent pvc's.
ARVD/C can be very difficult to diagnose so note any questions you find you need to ask and ask your doctor who is treating you. I'm on dr #9 trying to find one who will diagnose me or rule it out definitively - my cardiologists & EP's disagree with each other so I threw up my hands and gave up :P
Marie,
You need to go see an electrophysiologist(EP)!!! They are a cardiologist with training in the electrical system of the heart. There are alot of variables that have to be taken into concideration with which course of treatment will be best for you. I assume you had an echocardiogram of your heart? The EP will decide if you need just anti-arrhythmia medication, an electrophysiology study or an inplantable cardiac deffribrilator. I would refrain from any excersise until you see the EP, I am not trying to scare you but just let the EP tell what you can and can't do. Good luck
Kevin
You have an abnormal resting EKG, Cardiovascular magnetic resonance(CMRI) that says"major criteria for arvd"These results suggest that CMR is sensitive for the diagnosis of ARVC and may detect ARVC prior to the onset of clinical findings. Although,CMRI may have high rate of CMR false positive diagnosis of ARVC which can be related to the interpretors experience.
SAEKG which shows "late potentials"= late potentials-identifies patients at increased risk for ventricular arrhythmias.
Did your echo show any decrease in right ventricular ejection fraction or abnormal wall motion? Did you have an EP study?
Even if you take out the CMRI results and chalk it up to interpretor error you still have other criterior to be concidered a canidate for an ICD implant.
As you are aware you can always go for a 2nd opinion as you don't want to get this one wrong.
Wish you all the best, good luck
Kevin