myocarditis or idiopathic RVOT?

[fizzixgal]

I am a casually athletic female, age 49, nonsmoker, bp averaging 130/80, total cholesterol 126. Diagnosed with mild MVP/minimal MR 1985 by 2-d echo, nadolol 40 mg qd, down to 10 last year. No change on yearly echoes, asymptomatic from '87 til this year. No family history of arrhythmia.

Late February had mild afebrile illness, malaise without URI symptoms. Once sudden tachycardia on minimal exertion, then twice prolonged severe chest tightness (4+ hours) radiating into arms. All labs normal (incl ESR and C-RP, cardiac enzymes not checked), no ECG changes. Mild chest discomfort persisted for 3 weeks but returned to brisk walks 3-4 hrs/week. Echo in mid-March unchanged, LVEF 62%. Frequent pvcs started late March, referred to university cardio, 8445 pvcs/24 hours on Holter, no couplets or runs, echo mid April showed normal MV, mild MR, mild TR, mildly dilated left atrium, LVEF 60%. Referred to EP, diagnosed polymorphic pvcs of idiopathic RVOT origin, switched from nadolol to verapamil 80 mg tid, helps but getting some breakthrough. Last week mibi stress test normal at 98% maximal HR, MRI scheduled next week to rule out ARVD.

1. What would be the significance of latest echo findings, if any? EP is unconcerned, should I be?

2. Does this sound like it could be the aftermath of myocarditis? With my history how likely is ARVD?

3. EP has recommended ablation, how likely is this to be successful (assuming no ARVD).

Any other comments or advice would be welcome. Thank you and sorry for the lengthy post.

[CCF-M.D.-RCJ]

fizzixgal,

Thanks for the post.  Sorry for the delay.

Q1:"What would be the significance of latest echo findings, if any? EP is unconcerned, should I be?"

Mild MR and TR are seen in approximately 15-20% of the population.  A mildly dilated LA is common in persons with hypertension.  An LVEF of 60% is normal.

Q2:"Does this sound like it could be the aftermath of myocarditis? With my history how likely is ARVD?"

Yes, or more likely, pericarditis.

From your description, you have one minor criteria for ARVD, that being greater than 1000 PVC in a 24 hour period.  Four minor criteria are required to meet the diagnosis.  I don't seriously consider the diagnosis in someone with just one minor criteria.

Q3:"EP has recommended ablation, how likely is this to be successful"

I need more information to answer this question.  PVC ablation procedures as a whole have about an 80-90% success rate, provided the PVCs are present during the case.  The polymorphic nature lowers the success rate.  Talk to your doctor for more information.

Best of luck.

[fizzixgal]

I wanted to add some info if I could... until switching to verapamil and during the time I was having frequent pvcs I was also having chest pain at rest (diffuse, like a shadow of the earlier MI-like attacks) that was getting more frequent and became almost constant toward the end. I was also seen in the ER more than once during these episodes where cardiac enzymes were found to be normal (at least 5 weeks after the first attack however). No significant ST segment deviations were ever seen, only frequent premature complexes in normal sinus rhythm. As I said my nuclear study was normal at high workload. Could this still be unstable or variant angina (and the pvcs caused by ischemia) or has that been pretty well ruled out?

If it could have been viral myocarditis, can I or how will I know when I can safely exercise again without aggravating my condition? Exercise consistently relieved the pvcs and other symptoms for a few hours during my worst period. Also my EP does not think there is any risk for me to exercise but I am unsure.

[fizzixgal]

Thanks pluto, but actually there is a paper somewhere on the web about disappearance of ectopy with exercise being "falsely reassuring" to ARVD patients.

Also a lot of my pvcs were "interpolated", like a momentary doubling of my pulse rate. I just wasn't aware of them during exercise but the Holter showed that they were still going on. I don't know for sure about the 2-3 hours after cooling down because I didn't get that on the recording.

The breakthrough palps I get now on the verapamil are made worse by even slight body movements and definitely don't go away with exercise. They are mostly strong beats that coincide (or nearly so) with my normal rhythm, and very early prematures with a long pause and thump. Luckily I also have many symptom-free hours too.

[Clenn Camp]

I had ablations for afib ten weeks ago today.  I had pvc's as well as afib for over thirty years.  I have not had any afib since the ablation but I am still inundated with severe pvc's everyday with the exception of one day I did not feel any and another day they were relatively light since the procedure for afib.

The EP that did the ablation expects the pvc's to subside as my heart heals.  If they continue, he will do an ablation to eliminate the pvc's.  I have an appointment June 4, and if they haven't subsided to an acceptable degree we will discuss ablation for them.

Glenn

[Clenn Camp]

Maybe some of you can comment on this.  I know this is not a topic of this thread but it's difficult to be first in line each day to post something.

I read a paper years ago that was written by one of the first two Drs. in this country that researched CoQ10 that Q-Gel Coenzyme Q-10 would cure pvc's and other arrhythmias.  Q-Gel is touted to be the most absorbable, 100%, on the market.

I took Q-Gel for several years and experimented with different amounts of doses and it never helped to alleviate pvc's.

I continue to take a good brand of CoQ10 daily because my heart needs it, but pvc's pays no attention to it just as if I had not taken it.

Glenn

[Gaspipe]

My experience with CoenQ is the main thing it does is create some real expensive urine!!

[fizzixgal]

If I might ask, how long after ablation were you able to return to your normal activities? Did the ablation worsen the pvcs, or are they about as bad as they have always been?

I hope yours subside and you don't need another ablation. Please let us know what happens.

[Clenn Camp]

I haven't returned to normal.  Normal was so long ago I don't even know what it feels like.  I take that back.  two weeks ago I didn't have any pvc's all day long and only lightly the next day and then the following day after that .... WHAMO BAM!!! They hit with a fury again, I'm talking like the kind that 'takes you down' in a hurry.

It was ten weeks ago yesterday (Tuesday, May 18), since my ablatiion and I am still plagued with severe pvc's.

Afib was bad enough and I haven't had any since the ablation of which I am very thankful, but afib accompanied with pvc's were worse, much worse.  What I call severe pvc's are what I still have too many of. In fact any of this kind is too many.

Glenn

[fizzixgal]

Glenn, it sounds like you've been going through hell for way longer than anyone should have to. I've had really bad pvcs too and wouldn't wish that on anyone. Wishing you relief and full recovery soon, by whatever it takes.

[Momto3]

What is the doctor saying about the pvcs?  I know that after my first ablation a holter still recorded nearly 6000 in a 24 hour period....After the 2nd ablation, I was home free (fingers crossed).  It did take a couple of months to get the pvcs settled down.  Maybe you are a candidate for a second procedure??  Have you had a holter?  When I phoned my doctor within a month after the first ablation I was given another event monitor and then a holter....and then a second ablation : )

Hope you are able to find some relief very soon.  PVCs can be sooooo exhausting. Keep us posted!  We're all rooting for you!

connie

[Clenn Camp]

Who did your ablation to eliminate your pvc's and where was it performed?

No I haven't worn a Holter Monitor after my procedure for afib ablation, only the 30 day event monitor.  I have worn Holter's in the past prior to ablation but not after.  These danged pvc's are severe and make me weak, even one at a time makes me weak and I have to sit down to recover.

I have an appointment June 4, and if pvc's haven't subsided substantially by then, the Dr. and I will discuss another ablation.

Another BIG problem I have is my heart is very fibrous and that makes for a successful ablation, but I haven't had anymore afib that I am aware of and I definitely would be aware of it.

Glenn

[Momto3]

Glenn,

My ablation was performed in Cleveland by Dr. Kara Quan.  

I hope you get some relief from your pvcs. I wore a holter monitor after my follow up to ablation. During the appointment the doctor noticed I was back to old patterns of consistent ectopics.  About a year or so prior to the 1st ablation a holter picked up around 22000 pvcs (24%) in 24 hour period. WHOAH! HEY!! Fortunately, I did not experience the debilitation that so many other forum visitors have talked about. I was pretty much used to my heart skipping a lot and they were not painful...just bothersome and tiring. After the first ablation when holter picked up 6000, I didn't think that was too bad. But, the Dr. wanted to eliminate more because I was showing definite signs of myopathy as a result of the high frequency of ectopics. I have to say that since the 2nd ablation, I kinda had to learn to "adjust" to a new rhythm...a NORMAL one! It was kinda weird.

Fortunately (again), I do not think I have ever experienced afib...just some NSVT stuff. I can't imagine how strange afib must feel...

How many pvcs do you generally have in a day....hundreds, thousands, more....or is it more that they are they really "hard" ones?  

Where was your ablation performed?

Not sure I understand your comment about your heart being "fibrous."  Does that make it more or less difficult?

Here's hoping the afib has "retired" and the pvcs are about to take a LONG vacation to a faraway land!  Keeping my fingers crossed.

connie

[fizzixgal]

Connie, it's wonderfully encouraging to hear from someone who actually had a successful ablation for pvcs (as opposed to VT or a-fib). I've read so many horror stories of failed pvc ablations and even one or two that made things worse. If I may ask, what part of the heart were yours coming from?

[Momto3]

My first ablation was for RVOT and second turned out to be LVOT (although at first the doctor thought there was another foci in the right side). Earliest site for second ablation actually turned out to be left! They gave me heparin because of left sided involvement and I have noticed a remarkable improvement from a year ago.

EF is back up to 55% (from 40%)! YEAH!!

[fizzixgal]

Thanks, and great to hear your EF is back in the normal range! I'm trying to digest all of this... you had something like 25% ectopy for a year before ablation and developed induced myopathy that's now resolved? Or were they able to control your ectopics with medication in the meantime?

Also don't quite understand about the heparin... was this just before/during the ablation, in case there were thrombi already sitting there, or are you still on anticoagulants?

Sorry for all the questions... just trying to understand and get an idea of what to expect. My ablation is scheduled for July and I'm very nervous, also concerned that I may already be developing induced myopathy and wonder how long it takes to reverse.

[pms_barbie]

After my ablation I had to take plavix for a little while.  Because my ablation was in the left ventricle.  Its my understanding if I had had the ablation in my right ventricle then I wouldnt have had to take plavix.

[Momto3]

I apologize for the length of this post, but I wasn't sure how to condense my answer.

Yep, my doctor and I were thrilled with the report on my last echo - "normal" Let's see...It went something like this…..

Nov. 2000 - TEE ordered because an echo suggested possible worsening of MR; turned out OK with normal LV function; EF 55%.

Jan. 2001 - Normal stress echo; EF 55%

Jan. 2001 - Holter to quantify # pvcs; 92459 QRS complexes, 22531 Ventricular ectopics; 4419 isolated; 2517 couplets; 4 triplets; “MANY episodes of bigeminy” – BB PRN for symptomatic relief since all test results up to this point were great

Dec. 2002 Stress echo - functional capacity normal; evidence of a cardiomyopathic process in entire left ventricle; baseline EF 40%; stress ejection fraction increased - This is when things began to change after 20+ years!

Jan. 2003 – Began Tambacor; 2 days later echo showed EF 45%. Normal stress test; electrolytes OK; didn't like side effects of antiarrythmics and because I would be on them for life, Dr. suggested ablation(s)

Doctors determined the myopathy was very likely a direct result of the # of pvcs – I’m not sure if it was because of YEARS of pvcs or because of a significant increase...I always had lots of them, but never bothered to ask how many.

Aug. & Nov. 2003 – RFAs

Feb. 2004 – NORMAL echo!!  YEAH!!

The heparin had something to do with “irritating” the left side of the heart – apparently you can throw a clot a bit easier when they are working on the left side.  I was given heparin during the procedure and took aspirin for 45 days after.

Are you having an ablation for pvcs or afib?  Where?  Don’t be nervous….Believe me, I am the QUEEN of anxiety and it all worked out just fine.  Of course, the IV drugs helped. Don’t remember much of the procedure.  Why do you think you may be developing myopathy?  Reversal was quick!  I’ll get it checked at 6-12 month intervals.  Be sure to let us know how your ablation goes…Feel free to ask anything about the procedure – I might remember : )  Prior to the ablation, I asked a bizillion questions and I made sure the nurses knew I was very nervous.

Connie

[fizzixgal]

I have frequent pvcs (9.7%), suspected afib at one time but got on a monitor in time and it was not. My ep says that everything he has seen is coming from the RVOT and so far is hopeful he can cure me on the first go.<BR><BR>
<BR><BR>
I'm nervous because I have read so many ablation horror stories. Also very scared of what the MRI will show (how did they rule out ARVD for you Connie?) and whether I will make it to my July ablation date because verapamil is becoming less effective at suppressing them. Echo in April showed mildly dilated left atrium (normal dimensions in March before the pvcs started), so things seem to be progressing very quickly which is also scaring the heck out of me.<BR><BR>
<BR><BR>
That 9.7% was in early April and the pvcs were getting more frequent all the time. I was also getting easily winded and had constant chest pain just before going on the verapamil, that's why I am concerned about induced myopathy. The chest pain/SOB persisted for a few days after suppressing the ectopics and my exercise tolerance is still a little impaired.<BR>

[Momto3]

Hola!

Sounds like you are also a "walking pvc." Too bad you weren't able to capture the presumed afib...would have been nice to rule afib in OR out.  Hopefully, that was a one time experience. I think that RVOT sites are good for ablating.

I hope that I can give you some encouragement about your upcoming ablation. We are very close in age and I was really frightened, but I would do it again in a heartbeat! Not sure how they ruled out ARVD because I am not really familiar with what it is. I do know that I was having shortness of breath and I had a number of tests to see what was going on.  I also remember when my beta blocker was becoming ineffective.  It actually worked better for me on an "as needed" basis (more recently).  Has your EP considered antiarrythmics? Personally, if I had to decide again between the meds and the ablation, the ablation would be my first choice. However, everyone is different so I am sure there are many people who would prefer the medicine.  I have not had to take a single pill for pvcs since August 2003...Remarkable after all these years!

Where will you be having the ablation done? (what state?)
Sure hope you are feeling better. Hang in there!

[fizzixgal]

Actually I did get it captured and it wasn't a-fib, just lots of ectopics. But it wasn't one time, it was an every morning thing that was getting worse and worse until I started verapamil. I really was becoming a walking pvc and if the meds stop working, I'll be back there again and that's a very scary thought.<BR><BR>

Connie, http://www.arvd.com has lots of info on ARVD, probably more than you wanted to know. Basically it is a progressive myopathy that starts in the right ventricle and is hard to distinguish clinically from RVOT-VT. My ep thinks it is too often missed and orders at least a MRI whenever he sees frequent ectopics from the RVOT. It sounds like the Cleveland docs need a higher index of suspicion.<BR>

I don't want anti-arrhythmics either and my ep hasn't even suggested them, the verapamil is just to keep me comfortable until July. The more I think about it I am more scared of what I might have than of the ablation... this just seems so vicious and aggressive.

My ep is in Michigan and so am I... I would get a second opinion at Cleveland if I thought I had time, and if my insurance would allow it.

Thanks for all your support, I really appreciate it. I'm sure I will be okay as long I don't have some active carditis or myopathy. Waiting for tests and then waiting for the results is the worst part.

[Momto3]

Thanks for the link to info on ARVD...very interesting!! In my case, the left ventricle was becoming myopathic, but I don't think the right was involved. I cannot believe how different I feel from a year ago...Rare PVCs, no more swelling and renewed energy. I do still tend to tire somewhat easily, but I definitely notice a marked improvement. Kids and hubby agree!!  

While you are waiting I hope the verapamil works. Who needs more anxiety? When is your MRI?

Michigan?  We're neighbors : )

Good luck with everything.  Keep us posted!
connie

[fizzixgal]

Well I had my MRI today... really two of them because of an equipment failure first time around that forced them to reboot their computer before they had saved my data. This is not a comfortable test, I actually have a sore ribcage from it. Anyway now the anxious wait begins... I should know the results by Friday, or Tuesday at the latest.

[Momto3]

Hi!!

WOW!  Two go rounds on the MRI!  I didn't realize that that test was uncomfortable.  Sore ribs...OUCH!  I get that after some of my echos because they have to push and probe so much. One of them took 1 1/2 hours because I was in constant bigeminy. This last one was 1/2 hour...so nice : )

I'll bet you are anxious to get the results a.s.a.p. Any idea of when that will be?  If you would like, you may also email me at ***@****. I am keeping my fingers crossed that you get great results and relief from your upcoming ablation.

By the way, do you have a "theory" on hormones and their role in pvcs?  I'm pretty convinced they are relevant (they are always stirring up some kind of trouble) for many of us women. Thought that was a good question for a PhD...lol

Take Care
Connie

[fizzixgal]

Hi Connie,<BR><BR><BR>
<BR><BR><BR>
I think the soreness was from tensing up my muscles with anxiety as I tried to lie perfectly still. I have also had sore ribs from echoes (god that must have been miserable to be in bigeminy the whole time!!) but that's a different kind of soreness. This was more like a muscle strain behidn the right shoulderblade that bothered me to lift my shoulder.<BR><BR>
<BR><BR><BR>
I'm the wrong kind of Ph.D. to ask that question! :-) but really I have never noticed a connection between hormonal variations and my own pvcs. I never had frequent pvcs before March of this year though, and I have been on HRT for a while now. I have heard other women with pvcs say that theirs acts up during their period though. Actually because I do estradiol injections, I should notice this as serum levels rise rapidly after an injection. But the only thing that makes a real difference in my pvcs is verapamil... more than about 7 hours since an 80mg dose and I start getting them, otherwise I only get one or two here and there, even if I'm anxious or exerting myself.<BR>Maybe other women reading this will chime in...
<BR><BR>
I should have the MRI results by tomorrow, if not then Tuesday for sure. I have never been so nervous about a test! (well, not *this* kind of test anyway)<BR><BR>
<BR><BR>
BTW I just sent you an email...<BR><BR>
<BR><BR>
Liz

[Momto3]

(well, not *this* kind of test anyway)

Touche!!!  I hear ya!!  

Sent you a quick email. Promise to write more in the morning!

Connie

[fizzixgal]

It's okay Hank, I got the results today and they were negative.

YES!!!!!

I don't know how carefully they looked for other problems but the report said no wall motion abnormalities, no evidence of fatty infiltrates in the RV wall, and all cardiac chambers within normal limits. I asked specifically about the mitral valve because of my old MVP diagnosis and contradictory echo results, but there was no mention of it. I don't know how well MRI images the MV though.

Sorry about the extra space in my last post, for some strange reason my browser adds extra newlines when I do certain kinds of edits. I still haven't figured it out but will be more careful in the future.

[fizzixgal]

Hank, I think we both know that RULED OUT is going a little far; the only way to positively rule out ARVD is by autopsy. But yes, it's really good news. Don't know about the pvcs giving me a break, the Holter showed that they kept on going at about the same rate regardless of what I was doing, even during sleep. But the verapamil keeps them well suppressed, at least for now (knock on wood).

Thanks for all the support!

[Momto3]

HOORAY!!!  Wonderful news on the MRI test results. What a great way to start the Memorial Day weekend :)

I had the same experience with my pvcs....tests or no tests, I just kept on "flipping". Didn't seem to bother most of the techs, only the time I was in constant bigeminy.  They had me sitting up, laying down, bending over, leaning back...just trying to get them to stop.  Keeping my fingers crossed that your ablation brings you "Independence" for July!  Maybe the holidays will hold special memories for you this year : )

Thanks for sharing the GREAT news!

connie

[fizzixgal]

I met with my EP today and received one clarification that is encouraging. The Holter had shown 8444 pvcs of one morphology (plus one oddball during the last minute of the recording). The first time I met with my EP, one of the NP's identified at least 3 different morphologies on a strip done that morning. Since that was 3 weeks later, that was one of the reasons I thought this thing was progressing and that I probably have ongoing myocarditis or other myopathy. But today my EP said no, just one morphology, so probably one pesky focus causing all the trouble, most likely from a one-time inflammatory episode. Better than a 90% chance of success on ablation.

Of course, I have to balance that against the 1% risk of perforation and the additional 1% risk of needing permanent pacing. And verapamil works, so far, though I need a hefty dose, and I'm trying to avoid all emotional stress. What to do, what to do...