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Left Ventricular Non-Compaction

What has been your experience with this diagnosis?

  1. I'm 33 and just received my diagnosis last week after unexplained syncopal episodes throughout my life. I'm quite stressed, it sounds like I might need an ICD implant but there's a lot that's unknown right now. Apart from fainting randomly I don't have many symptoms, it is scary since I work as a midwife and assist with surgeries and my last episode was when I was about to assist in the OR. I'm not sure I can continue working with the strenuous hours and risk of passing out or having a cardiac event. There's a lot that's unknown at the moment. I'm trying to stay positive but pretty worried!

    1. Have you ever been tested for POTS, otherwise known as Postural Orthostatic Tachycardia Syndrome? Some of the symptoms include lightheadedness, fainting, and rapid heartbeat. Welcome to the group. Thank you for sharing. Leslie (Community Moderator)

  2. HI. I see you are new to our community, having just joined yesterday. Welcome to the community. Glad to see that you are already engaging here in the forums. Sorry to hear that you are having to experience passing out and now your diagnosis of left ventricular non-compaction. I can certainly empathize with you on how stressful it must be having to deal with all of this. I am glad you are trying to stay positive, as that can bode well for you when you are dealing with something like this. Has your doctor talked to you about other options (such as medicine) other than an ICD? Just curious. John. community moderator.

    1. Thanks so much for the warm welcome! My cardiologist wants to hold off on medications for now, I think her main concern is the syncopal episodes are possibly from arrhythmias, they occur usually oncea year, but I had 4 episodes this year and the last one was while assisting a surgery in the OR, thankfully I had a fantastic medical team already there but they said it didn’t seem like a typical vasovagal response. That led me to get worked up and get my diagnosis. It’s all very early days for me but I’m almost 34 and otherwise very healthy, it was just a shock. Any insight on Lvnc or having a defibrillator inserted would be much appreciated! I’m honestly quite anxious about the risk of sudden cardiac death more than anything else

      1. Hi there, thanks for sharing your experience. I can understand how you concerned about your work schedule related to your health. I hope that a good decision becomes apparent soon. I'm sure that your patients/clients will miss you if you were to stop catching babies. I had three of my babies with midwives and am in amazement of your skill set.

        Yoga and the gym must be agreeing with you if you are feeling stronger and healthier. I'm glad that you are feeling well. Thanks for taking the time to share.

        -Lauren (team member)

      2. Thank you for the kind words and all your support! That's so lovely to hear you delivered your babies with midwives 😀 I'm working on making peace with not knowing long term what I'll be doing as far as work, hopefully with time it will be clear what will be the healthiest balance will be, and for now I'm enjoying working just in clinic! I'll keep you posted! Hope you're having a nice fall. Thank you again for your support and encouragement!

    2. Personally, I haven’t had experience with left ventricular non-compaction, but I did have various symptoms related to this, such as: palpitations, fatigue, dizziness and swelling in my feet and legs. Were you diagnosed with left ventricular non compaction? Leslie (Community Moderator)

      1. I haven’t been tested for pots, though I did think I might have it prior to my diagnosis. It sounds like my doctor is concerned about arrhythmias but i really hope the syncope isn’t from that

      2. Syncope or even seizures are one symptom of heart failure. Yes, arrhythmias are a concern and can cause lightheadedness and passing out symptoms as well. As a child, I was tested for POTS because I would have bouts of syncope or passing out, which was related to my experimental open heart surgery to keep me. Arrhythmias can be a pain. Thank you for sharing. Leslie (Community Moderator)

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