Left ventricular non-compaction – LVNC

Posted by charlottegrace @charlottegrace, Apr 22, 2019

<p>I am a 64 year old female just diagnosed with LVNC non compaction cardio myopethy. What are the main concerns in management of this condition</p>

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Welcome to Connect, @charlottegrace,

Left ventricular non-compaction (LVNC) is a condition of the heart where the walls of the left ventricle (the bottom chamber of the left side of the heart) are non-compacted, causing channels to form in the heart muscle. This gives the left ventricle a 'spongy' look (a bit like honeycomb). Although it usually affects the left ventricle, it can also affect the right ventricle. The American Heart Association describes LVNC as a type of genetic cardiomyopathy – an 'unclassified' type of cardiomyopathy which may also be associated with dilated or hypertrophic cardiomyopathy. https://ghr.nlm.nih.gov/condition/left-ventricular-noncompaction

Since not everyone has symptoms, LVNC is sometimes diagnosed when someone has dilated or hypertrophic cardiomyopathy. Symptoms usually occur when
– the non-compaction reduces how well the heart can pump blood, which can cause symptoms of heart failure or
– the trabeculations (channels) affect the normal electrical signalling of the heart, which can cause arrhythmias.

Here is a recent journal article that offers more details with regard to treatment; I’ve copied relevant information for your convenience:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4763555/
"Treatment is directed toward the three common implications of LVNC. Heart Failure here is treated similar to other causes of HF with reduced ejection fraction (HFrEF). Beta blockers, ACE inhibitors, diuretic, digoxin may be used to manage the systolic and diastolic dysfunction.
Given the risk for sudden cardiac death and arrhythmias annual Holter monitoring may be done. Additionally, EP studies and anti-arrhythmic therapies may be necessary. AICD placement, bi-ventricular pacemakers may help reduce SCD.
Long-term anticoagulation is recommended in all cases regardless of symptoms."

You might also be interested in viewing this Video Q&A about Adult Congenital Heart Disease on Connect: https://connect.mayoclinic.org/webinar/video-qa-about-adult-congenital-heart-disease/

@charlottegrace, could you share more details about yourself? Did you experience any symptoms? How was it diagnosed? Has your doctor outlined any next steps?

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My symptoms were masked perhaps for years by the fact that i have had asthma all my life and aggressively treated the management of my symptoms and attacks. In march i began having severe swelling in my feet and ankles and face along with very reduced breathing. I sought emergency treatment which indicated lvnc and congestive heart failue, and i was sent from nevada to utah for a confirmation of the diagnosis, as my cardiologist had never seen this condition. My ejection fracture is 20% and i was put on eloquist, 5mg 2x day. Cardival, 9.50mg 2x day,atorvastatin 4omg 1x,losartan 25mg 1x furosemide 60mg 1x and spironolactone 12.5mg 1x. I have not experienced any swell8ng but increased difficulty breathing and greatly reduced energy levals. I have not yet been tested for improvement in heart function but my cardiologist has indicated anticipated need for a pacemaker/ defribulator . i had avoided seeing a doctor for many years due to extreme anxiety associated with any contact stemming from traumatic treatment for asthma in my youth. My blood pressure has lowered and i monitor it and my weight (116 lbs, 5'4"). Im very concerned about the medication protocol and my breathing difficulties which i use oxygen for at night but seems worse now most of the time. Thank you for you interest and input, im trying so hard not to burden my husband or have my health impact his quality of life going forward.

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Hi @charlottegrace,

How are you doing? Have you made any progress with treatment? I’d really like to hear back from you.

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I am doing well, thank you. In march my BMP was over 2000. My first post attack blood work showed that had gone down to just 14!!! But it cost me in breathing difficulties and weakness. We replaced the Carvedilol with another beta blocker and 1 week into it i have not found much relief and my carbon dioxide level is high and i jhave increased my oxygen to compensate for the buildup.

I still have questions about the reason for increased risk of sudden death, although i have found the reality of this really liberating. Knowing that my time could be cut short adds a sense of urgency to my life. I try not to miss an opportunity to express my love and appreciation for the people. In my world.

At the end of august i will have an echocardiogram to see if my ejection fracture (sp) has improved from 20%. We are aiming for 30÷. Ill let you know how it turns out. I am currently adapting to a new drug protocol again. So i dont feel too well yet, but i measure my progress in small improvements in my stamina and energy levels.

Wishing you health and happiness and thank you for your input and interest…………

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What is the definite diagnosis ratio for LNVC? I had an MRI done and was told mine was 2:1 NC to C and everything I’ve read says a diagnosis is greater than 2.3:1 ratio. Does anyone know and does that ratio if true mean I don’t have it?

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@jamesyoung

What is the definite diagnosis ratio for LNVC? I had an MRI done and was told mine was 2:1 NC to C and everything I’ve read says a diagnosis is greater than 2.3:1 ratio. Does anyone know and does that ratio if true mean I don’t have it?

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Hi James, I moved your message and question about left ventricular non-compaction (LVNC) to this previous discussion of the same name. I did this so that you can connect with @charlottegrace and read the excellent information provided by Kanaaz. Please scroll through the past posts.

Since LNVC is a genetic cardiomyopathy, I'm wondering if you've investigated genetic testing to determine the diagnosis? Do other family members have a history of heart issues?

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@colleenyoung

Hi James, I moved your message and question about left ventricular non-compaction (LVNC) to this previous discussion of the same name. I did this so that you can connect with @charlottegrace and read the excellent information provided by Kanaaz. Please scroll through the past posts.

Since LNVC is a genetic cardiomyopathy, I'm wondering if you've investigated genetic testing to determine the diagnosis? Do other family members have a history of heart issues?

Jump to this post

No Collen I haven’t done any genetic testing. No family history of heart issues I’m aware of. My dad lived to 98 and mom is 87 and has had a stint in her heart but that wasn’t done till age 85

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My DNA profile had LVNC at the top and one of my sons also had this as the #1 issue shown on the report. I have been told that I have a functional heart murmer for years, but no doctor ever referred to LVNC as a possible cause. My father died of congestive heart failure at 95 but his mother died suddenly in her mid 70's , my age now. Shoulld I follow up with a cardiac specialist for a diagnosis? I don't have any specific symptoms so there may be no treatment given.

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@krisjb1 Hi Kris and Welcome to Connect. I would probably say to have it checked out at least. Have you had an EKG to see if something is amiss? I wouldn't wait for symptoms to just get a little peace of mind from a Cardiologist.
Blessings
Dana

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I am really glad I found this page.

I have Left ventricular noncompaction and it’s a heart (cardiac) muscle disorder that occurs when the lower left chamber of the heart (left ventricle), which helps the heart pump blood, does not develop correctly. Instead of the muscle being smooth and firm, the cardiac muscle in the left ventricle is thick and appears spongy. The abnormal cardiac muscle is weak and has an impaired ability to pump blood because it either cannot completely contract or it cannot completely relax. For the heart to pump blood normally, cardiac muscle must contract and relax fully.

I am 28 years old and I do not have any of the common or expected symptoms. I participate in various extracurricular activities such as basketball, soccer, running, and walking 3-8 miles a day.

My ejection fraction is at 35% as I am sharing this.

I am in the process of following up with my doctor regarding this condition and go over treatments for the future.

Has anyone gone through this and reversed it or improved their ejection fraction to a normal fraction or non heart failure ejection fraction?

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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.

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@charlottegrace

I am doing well, thank you. In march my BMP was over 2000. My first post attack blood work showed that had gone down to just 14!!! But it cost me in breathing difficulties and weakness. We replaced the Carvedilol with another beta blocker and 1 week into it i have not found much relief and my carbon dioxide level is high and i jhave increased my oxygen to compensate for the buildup.

I still have questions about the reason for increased risk of sudden death, although i have found the reality of this really liberating. Knowing that my time could be cut short adds a sense of urgency to my life. I try not to miss an opportunity to express my love and appreciation for the people. In my world.

At the end of august i will have an echocardiogram to see if my ejection fracture (sp) has improved from 20%. We are aiming for 30÷. Ill let you know how it turns out. I am currently adapting to a new drug protocol again. So i dont feel too well yet, but i measure my progress in small improvements in my stamina and energy levels.

Wishing you health and happiness and thank you for your input and interest…………

Jump to this post

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.

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