aneurysms

[416340]

Hello, I am a 24 year old female who use to have 24000-35000 PVC's from the RVOT a day.  I have had many episodes of syncope, near syncope, dizzyness, extreme weakness, racing heart, chest pain etc.  I also have a brother that passed away suddenly at only a few months of age from what was thought to be SIDS.  My cardiologist then ordered a cardiac MRI (at canada's top cardiovascular center).  The initial report stated that they found "localized RV aneurysms on the RV free wall".  Because i had now met one major criteria for ARVC/D (the aneurysms) and one minor criteria (# of PVC's) and have a positive family history for SCD, he thought an ICD was needed.  I was then sent back to the cardiovascular center where they preformed an signal averaged ECG which came back normal.  They then did a heart cath, angiogram and RV angiogram which they said were slightly abnormal (no more details were given). They then did an EP study which they said was not consistant with ARVC.  Instead, they found RVOT PVC's and AV nodal reentry tachycardia, both which they were able to sucessfully ablate.  The cardiologists then went and looked at the MRI themselves and not just the report.  They said that they are not certain that i actually have an Aneurysm.  They said that as far as they are concerned they do not believe that i have ARVC and that they i should have an MRI done annually to make sure they were not too quick to rule out ARVC.  So now i am confused.  Is it possible for the MRI reader (who is considered the best in canada) to initially say that there was an  RV aneurysm and then later have my cardiologists say that they are likely non existent?  If i do not have an aneurysm, why would the initial report state that i did?  Could he have mistaken it for something else?  Should i just trust them and forget about ARVC until the next MRI, one year from now?  Any information or insight would be greatly appriciated!

[416340]

I sent a copy of my MRI (as well as other documents) to John Hopkins today.  Hopefully they will be able to give me some clear answers. I will keep you updated!

[101705]

To answer your questions; I have been getting my care in Hamilton ON.  They performed the 1st (positive MRI of May 06) and also the ablation of July 20/07.  Once they assigned the Dx of ARVD I went for a second opinion and work-up at LHSC (London ON) as they are very familiar with ARVD there and also are part of the ARVD Multidisciplinary Study - I figured I could be their guinea pig and thereby get a thourough work-up.  I brought them my original MRI on a disk to get their opinion (the Hamilton Hospital had no trouble releasing it to me as I was taking it to another doctor - i.e. it was free of charge - I made a copy for myself and stored on my hard drive).  In London they really did not bother even looking at the original MRI but did their own with ARVD protocol including post-gadolinium delayed enhancement - that MRI was negative for any major or minor criteria (just by coincidence I was not actually having PVCs at the time of either MRI).  All other studies subsequently performed were negative - EP study, echo, signal ave., etc.  I did not have ventriculogram done as you have.  London are not following me now as they dont consider me an ARVD case at present.  So I am in limbo with the Dx.  While waiting I (myself) decided to send a copy of my original MRI to the John Hopkins ARVD people and it was looked at by one of their expert ARVD MRI readers - the result is as I mentioned in the tread above.  For this John Hopkin's opinion I am having to pay cash myself - I dont know the amount becase I didnt get the invoice yet.  You should be able to get a copy of your med record from the hospital you dealt with no problem including your MRI on a disc - but you may have to pay a small fee - that is normal.  Nobody has recommended a difib to me as I have not had any syncope or pre-syncope - if I did I am sure they would.  In your case I am glad to hear that you are now asymptomatic.  Good luck and keep us posted.

[416340]

Yes, I remember your story from an earlier thread. Thanks for posting again, I was actually hoping that you would -- our stories seem identical.  I went out of province to Calgary for the MRI as my cardiologist said that they are known world wide for their expertise in Cardiac MRI's.  Within a few days, I had an appointment with my local cardiologist explaining the aneurysm findings and my new diagnosis, ARVC.  We asked him if this could be a mistake and he assured us that the MRI reader I had was very experienced and that it was not simply a mistake.  He then explained that the best approach to handle this was to get an implantable defibrillator.  So he made arrangements in Calgary for this procedure to take place as well as other tests.  I went to Calgary and had other tests done which all came back normal.  The cardiologist in Calgary then decided to look at the MRI images himself and said that he believes they were not actually aneurysms and just normal variants (like in your case).  I just don't understand how the MRI reader (who is so experienced and considered the top in Cardiac MRI interpretation in Canada) can say that you definitely have an Aneurysm on the free wall and then another cardiologist  say that it is a normal variant.  I want to believe that it is simply a variant, but I'm not so certain.  And because of the nature of ARVC, I am scared to do nothing and wait and hope that I don't have it.  Do you mind me asking where in Canada you have been receiving your care (MRI, ablation etc)?  Where in the states did you send your MRI report? I was thinking of doing the same thing. Did you get the MRI lab to send it directly, or did they give you a personal copy?  Sorry about all the questions, things just seem so confusing. By the way, my syncope is believed to be from vasovagal syncope as well as RVOT VT and AV nodal Reentry tachycardia.  

[101705]

I am a 43 year old male. I have responed in threads to you before - once with a link to an article on differences between ARVC and RVOT PVC/VT.  Anyhow we have near identicle stories - except for the passing out or near syncope which I have never had.  I am also in Canada.  I have (sicne Oct 05) had constant PVCs in the 19,000 to 32,000/day range. In May 06 went for an MRI to "rule out ARVD" as a preparatory step in the gear-up for an ablation of the PVCs - guess what; "multiple small aneurysms of the right ventricular free wall" - than combined with my PVCs and a little hypokin of the right apex and they dropped the ARVD bomb on me.  Since then I have had multiple work ups and all tests have been negative: EP study, signal ave., ECGs, Holters, Echos, everything.  Even had a second MRI done at a second center and they said "No major and no minor criteria for ARVD" i.e it was totally normal.  Then I sent my original MRI (with aneurysms) to the US for a second opinion and the word back was: incomplete study as no black blood or contrast enhancement images are available" - "cardiac morphology/size; within normal limits, myocardial function: unremarkable"  Anyhow I followed up the report with a phone call to the Dr. who gave the second opinion and asked why he didnt report on the aneurysms.  He answered that yes he did see them but considered that they may be a normal varient.  Therefore in my opinion and based on my experiene with MRIs to date I would say that MRI is giving quite a few false positives for ARVD.  I would say there are alot of people running around that if you threw them into a MRI machine would come back with something funny on the right free wall.  In my case I think that I got my aneurysms from a bad flu in the spring of 05 as I never had PVC probems prior to that since they have been constant - All I really know is that I will never know for sure.  I had an ablation of my PVC on July 20, but it has not been very successful and I still have pretty big #s.  Maybe in 6 months or so I will go for #2 (not a fun experience as I'm sure you know.  Do you have any idea what was causing your syncope? was that VT? Anyway our cases are very similiar including all the uncertainty re the ARVD Dx. - hopefully neither of us actually have it.  Good luck and congrats on your elimination of the PVCs

[416340]

Thank you for your response.  I had the ablation done last Wednesday and so far I have been feeling great -- no episodes!  I hope that it is not ARVD, but at the same time, I wish we could be certain because from what i understand ARVD can strike dangerously with little or no warning.  So I just worry about how safe i am if we wait for one more year for the next cardiac MRI?  By the way, the MRI protocol they used for the MRI was ARVC/ARVD.

[Cleveland Clinic]

I am not an MRI expert, but no test is 100% specific or sensitive for a given abnormality. MRI if performed with fat suppression is very sensitive for ARVD, but not 100% so it cannot fully rule in or out the disease. With your history and family history, the findings on the MRI supported ARVD. There is a possibility that the MRI reader was wrong, but if he is the expert in this area he was most likely correct. How are you feeling now, after the ablations? Have the symptoms of passing out and palpitations resolved?