Left ventricular non-compaction – LVNC

Hello, Imagine my surprise when my genetic report listed this issue as being number 1 in importance on the sheet. In my more than 70 years many have listened to my heart and proclaimed, "You have a heart murmur. Nothing to worry about though." Not one has ever mentioned left ventricular non- compaction and I have no real desire to find out at this late date. As there is nothing to be done about it I am not so sure I want to have an extra concern. One of my son's genetic results also lists the issue and similarly no one has ever brought his attention to a problem. Do either or both of us actually have it? We don't know. I have been very active at times in my life and exerted myself physically in ways that most women have not. I have dug large gardens and done a little running. I can't say that my performance was as good as it should have been because I would be easily winded and didn't have a lot of stamina. Whether non-compaction caused it is a mystery.

good afternoon charlotte my name is cael I am 16 years old and in the past year, I have been diagnosed with Lvnc with a chance of sudden cardiac death. what mental health problems have you experienced after having been diagnosed and what problems have you go through.

my ejection fraction is at 43% and fluctuates between 5 points either way but the crazy thing is that I have had syncopal events (passing out) but no arthrima so at this moment i am a medical mystery. have you ever had doubt about whether you were going to survive or get through it?

My daughter, who is 8, was diagnosed with PLSVC with absent right. I was reading the report and it mentioned a mildly traberculated left ventricle with normal function and an EF of 65%. How concerned should I be considering this finding was never mentioned to me?

My wife was diagnosed 1 week ago with LVNC at 65 years old and a ejection fraction of 14%. Her ejection fraction went from 45% to 14% in about 1.5 years. We live in Western NC. Is their a specialist in LVNC? Is a heart transplant her only option for treatment at this point? We are seeing an advanced cardiologist next week in Asheville. I want to get her the best help available. What would you recommend?

Hi there - It must have felt pretty wild to get such a diagnosis at age 28! I was diagnosed at age 40 and it floored me. I too, had no symptoms (it was found only because I'd for the first time ever had slightly elevated blood pressure.
it had always been normal - so my OBGYN was afraid to continue birth control without my GP/Cardiologist making sure it was okay. Long story short, I was able to bring down my blood pressure through healthier diet, more exercise and without medication (when they caught the elevated blood pressure, I'd been overly stressed at work, and eating poorly), all prior to the diagnosis of LVNC.
But when the did diagnose me, and then told me the risk of "sudden death" (remember this was 2011 and at the time, not much about LVNC was known, and cases were all in far older patients, often with comorbidities), and that standard protocol was a pacemaker /defibrillator implant - well, I was understandably really distressed. I was otherwise very healthy and young and living a very fun full life, as it sounds like you are - deservedly so! So it was a shock and it took me a long time to process it.
I cannot accurately recall my ejection fraction from back in those days, but I do believe it may have been around 35% - 40% give or take.
It took me a long time to wrap my mind around the diagnosis and the need for the implant. But I did get the implant in 2011, and actually, now, 12 years later, I just had the surgery to update the implant (the battery dies after an approx. number of years - they'd anticipated 7 years, and I went longer than that, due to the implant not having to use much energy for me). The pacemaker on my device actually isn't even used - I've had no need for it. The defibrillator is there in case of an event/arrhythmia - which I've never had to date.
To answer your original question (! sorry for the ramble but thought you may appreciate hearing from someone on the younger spectrum of diagnosis age), my recent ejection fractions for the last few years have been normal - between 50-60%. My cardiologist has always attributed this to how well I have responded to my medication (I've been on a blood thinner - first Pradaxa, now Eliquis, carvedilol, lisinopril, and spironolactone) since the initial diagnosis 12 years ago. I'm now 52. For all intents and purposes, aside from feeling the implant when I touch the area (which isn't hardly visible at all to anyone looking at me, and I wear strapless dresses too without worry of embarrassment), I live a perfectly normal life. No restrictions and I've never had any additional symptoms and never has the implant device had to provide "therapy" to me due to any arrhythmia. I have an app on my phone that monitors the device, and sends regular reports to my Dr so they know if anything happens, and there's never been anything.
I share all of this with you to offer you a positive example of an outcome from this confusing and scary when diagnosed condition! I wish you all the best - and hope that this doesn't have to hold you back from your lifestyle either! If anything, it has been a blessing to me in some ways in retrospect. Having to face my own mortality at a younger age than most helped me have far more perspective on my life and how I want to spend my days. I'm actually really grateful for that and hope that you may find the same. 🙂 Sending you good healing vibes and support.

Hi

I’m 38 super active, strenuous work - in my career is unavoidable. So if I have this condition thru will change so much for me. Have had palpitations and chest pains, very low bp, most of these my whole life. My exercise tolerance is diminished last 3 years and feel tired and dizzy often especially after long days or weeks, I get very pale when tired. Also have Hashimotos hypothyroidism( 6 years )
Am waiting for Cardiac MRI.
Echo showed - 45-50 % EF
Left apex shows ‘prominent trabeculation’.

My biggest question is… while I wait a month for MRI- would this seem a likely a certain DX of LVNC or not?

Hi Cael,
I am 31 years old, I was diagnosed with LVNC at age 28. I can tell you that when I was told of this, (and after doing initial research on Google) I struggled very hard mentally. I had just started living in my own apartment and developed very severe anxiety. I thought I would drop dead at any moment.

BUT, I am doing so well since then. I have had additional testing done and read more articles on the condition and it has put my mind at ease.

This condition, (for some people) appears to be reversible! It is sometimes developed as well (as seen in those who are athletes or pregnancy). Nonetheless, please do not feel like this is a death sentence. It is not. Especially if doctors are aware of it, they will monitor you closely if it is necessary.

As far as symptoms, I was having palpitations, heart flutters, chest pain, and occasional lightheaded mess / shortness of breath. With diet and safe pace of exercise, I truly feel like I will be able to live a long time, and so can you!

Hello, have you received an MRI yet? According to research articles, sometimes a simple CMR result is not enough to diagnose LVNC. It also is largely dependent on your symptoms: heart failure, syncope (fainting), history of stroke, etc

Thank you so much for sharing your story!! I was diagnosed 3 years ago at age 27 and have since heard about the possibility of an ICD. I just had an EPS Study done yesterday and the results were negative. This story made me feel a lot better about getting an ICD in general, it is not a death sentence, hard to manage or an eye sore — which is such a relief!