NSVT turned deadly

[7310]

My 31 year old brother passed away suddenly one month ago.  He had been seeing a EP doctor for over a year and he was complaining of episodes of palpiations. At best, monitors showed PVC's and runs of non sustained VT.  His EP doctor did an echo which came back entirely normal.  His doctor was convinced that it was benign and told him that it was nothing to be concerned about.  Then suddenly last month, he went into sustained VT and passed away instintly, he was unable to be recessitated in the ambulance.  I am so frusturated and upset right now -- nobody seemed to take him seriously and then bam -- it turned fatal.  How can something so benign, turn fatal like that???  I just need some answers and right now I don't have any.  I have read many posts on this forum that all say that NSVT is not of concern -- how can that be right????

[Betsy01]

Hi, my comments in relation to your loss and loss of my 8 yr old daughter who went into a cardiac arrest early this year, are found in comments under "Shortness of breath and yawning" and "cardiac arrest and children" in regards to symptoms, and autopsy results..
I can relate to your loss. Its only in the memories that the pain lessens as we remember their smiles and good times with them.

[tickertock]

Just to add a cardiac MRI or even a biopsy is the best tests to diagnose ARVD to the best of my knowledge.

[tickertock]

Very sorry to hear about the lost of your brother, you have my deepest sympathy. I'm not a Doctor but from the information you provided it sounds as though your brother might have had ARVD/C , Arrhythmogenic Right Ventricular Dysplasia/Cardiomyopathy (sp?). This is sometimes the cause of PVCs or ROVT VT, it is not common , though Italians and persons of Italian descent it is more commonly found. Hope you find the exact cause and is not left wondering, also hope the doctor here on the responds and gives you some guidance as to what might have happened. Hoping you find comfort during this tragic lost.

[7310]

Today I revieved a bit more information about my brother's heart that was found during autopsy.  Aparently, his right ventricle was infiltrated with fat.  I have no idea what this means or how someone gets this.  I was so upset that this was not found previously during his examinations so I called the cardiologist.  He said that an echo is not the best way to closely examine the right ventricle and as such things can be overlooked.  SO THEN WHY DIDN"T THEY DO A TEST THAT CAN?????? He said that the results of the autopsy was not at all what they were expecting during clinical evaluation based on our family history, his ECG or the echo.  Does this sound right, or are they just covering there butts (sorry, not sure how else to say it)?  
Basically, I want to know what all of this means and why he asked me and my family to be referred to a Cardiologist for a consult.  Any information is much appreciated.

[carahae]

Doctor,

I am curious what you mean by "Did they try to rule our anomalous coronary circulation?"     Are you meaning the standard nuclear stress test to look for ischemia?   Or is there some other type of  anomylous flow possibility in anyone?

[Momto3]

I am so very sorry for your loss.  I can't begin to imagine the frustration and heartache that you and your family are dealing with. I hope that you are able to find out why your brother's telephone calls were not returned. In my opinion, that is unacceptable.  

May you find peace in your memories.
Take care
connie

[Cleveland Clinic]

I am really sorry about your brother.  PVC' are typically benign, however, NSVT in someone that young is of some concern, however, the fact that he had a normal echo put him at very low risk for sudden cardiac death.  The risk is not zero, unfortunately.  I am wondering if there was something else going on that did not turn up during his workup.  Did they try to rule our anomalous coronary circulation?  This is not something that is not typically done, but given that he is so young with these symptoms and findings would probably push towards doing so.  Also,  the fact that he was symptomatic would probably push me towards performing an EP study.  That study, however, does not always end up finding what the problem is, and in the end may not have affected the outcome.  I think, that based on current guidelines his doctor did everything appropriately.  Again, this is assuming that your brother did not have any evidence of an electrical abnormality on his EKG such as long QT syndrome or Brugada's syndrome, etc and no signs of cardiac ischemia such as exertional chest pain or shortness of breath.  I am assuming that your brother had never passed out before that.  Again, I am sorry about your loss.  

[varly]

Hi...I very am sorry to hear about your brother.

I had a run of NSVT recently that showed up on an event monitor.. This resulted in a visit to my EP doc. Echo was normal as was the EKG. I had a stress test done several months ago...normal.

I have a history of CAD by CT angio...moderate blockage, which 2 docs feel no reason to do anything about that. My own family doc says we all hav some minor blcokage by age 50.

So, Here I am a nervous wreck!!!!!

What is a person to do...I have been to many doctors.

I am curious,...was your brother's doc from the Cleve Clinic?

Take care & God Bless,
varly

[7310]

I pray that this story will give others who have been brushed off previously (due to age, or whatever the case may be) to trust what there bodies tell them and not settle for a doctor who won't take them seriously.  A year ago when my brother first started experiencing palpitations, his cardiologist offered him some medications, but then warned that the side effects of the medication could potentially be more worrisome then the palpitations themselves.  For this reason, they decided to hold off on the medications.  He also said that an EP study wasn't really necessary in a structurally normal heart.  His Cardiologist did say that if his condition becomes worse, they may have to discuss the use of medications again.  But then 6 months ago, the palpitations increased in frequency and my brother decided he wanted to be on medications and have an EP study done.  He attempted to get a hold of his EP doctor to let him know this, but after calling on more than 25 different occasions, he gave up and felt that he was likely taking this too seriously and that's why his doctor did not return his phone calls or schedule an appointment.  In hind sight, we would have done so much differently.  

[PerChance]

I am so very sorry to hear about your brother.  I didn't know him, of course, but I think I can safely say that many of us with arrhythmias or even "benign" conditions fear exactly what your brother had to go unfortunately through.  

Personally, I have felt belittled and ignored plenty of times.  It seems like the newest trend (or maybe it's just new to me) is to get placed in the 'anxiety' bin when our symptoms either can't be properly caught on monitors or our descriptions of those symptoms are disregarded.  But as so many people have told me:  we each know our own bodies best.  As difficult as it may be, it is very important to seek out and find someone who will listen.  I'm so sorry your brother didn't have the chance.

I wish I could be of more help with the medical side of your question, but I would fall short if I tried.  I'm still trying to learn about so much of this myself.  

[andie5]

Also, was he taking any medication for his condition at all?

[andie5]

Hi--
I am very sorry to hear about your loss. I am going through the same thing as your brother and this is scary. Did he have an EP study done? I am scheduled to have one next week. Every other test has come back normal.

Thanks.