My 19 y.o. son has had 10 syncope episodes since he was little, usually triggered by pain plus stress. I can see he doesn't breath and has no pulse. We changed doctors several times because they didn't believe me. Finally he got a diagnosis of benign neurocardiogenic syncope but still no belief on the pauses.
Recently we saw a new doctor who asked for a tilt-table test which came out positive with a 36 seconds pause, dx "neurocardiogenic syncope, cardioinhibitory". This doctor said he has malignant syncope and he's in danger of sudden death and needs a pacemaker. Other labs are: echo (normal), holter (normal with sinus bradi at 40, sinus tachi at 175, one SVES), and hi-res ECG with hi R-R variability. I took him to another opinion with a syncope specialist who says it's benign syncope and no need for pacemaker and recommended getting fit, maintaining hydration, tilt-training etc. Last week he took a ergoespirometric test and had right bundle block pre-exercise (inhale-exhale-hyperventilation phase) but was otherwise a normal test with good recommendation for exercising; fitness zone 130-145. Sometimes he wakes up with numbness in the arms which we couldn't correlate to anything and he is otherwise a bright young man.
Is this benign syncope, malignant syncope, or some other neurology/cardiology condition? Does he need a pacemaker? Is he in risk of sudden death? What else to do, where else to go? Thanks.
Wow. First I want to say that this is not my area of expertise. When I was in practice and I had kids with what I thought was cardiogenic syncope, I utilized a cardiologist in whom I had great confidence and then I followed their reccomendations. One gave us a talk once and I was shocked at how often she documented "asystole" (that is, cessation of the heart beat) for significant periods of time when the tilt-table test was positive. Sometimes the answer is indeed hydration, meds to retain salt and water (and thus blood pressure) and inreased fitness. BUT....
However, if I was your son's doctor, I would be VERY concerned at the dx (and apparent documentation) of cardioinhibitory, malignant syncope. The pause that you mentioned was the length of time his heart stopped. Also the work up by the syncope (fainting) Dr. showed an electrical abnormality (the right bundle branch block) in how the heart conducts the electrical impulses which control the heartbeat and heart rhythym. It also showed some bradycardia (slow heart beat - 40 is significant! especially in a kid whom I gather is not an elite athlete).
We can't tell from here who is correct. As always, my inclination is to pursue confirming the diagnosis for the thing that is most dangerous. You need another opinion from a confirmed expert. I would have your son's former pediatrician or current doctor discuss this or refer your son for ASAP evaluation at a major, academic medical center - even just a phone discussion with an expert - heck! have her/him call the Cleveland Clinic Cardiology Department. If no one will call then write up everything that you wrote here in more detail and send it to the heads of cardiology at CC, Mayo, and to the biggest academic centers near you. Bounce all these findings off of another consultant and see what they say. I have personally used this approach and been astounded how kind and prompt some of the response have been.
I say pursue this fast and firmly. The consequences are too dire if the first Dr. is right. The consequences of pursuing it can be measured in mere time and money, but won't cost your son his life.
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