#Middlebury
DEAR DR. ROACH: My 18-year-old grandson has just been informed that he has left ventricular noncompaction cardiomyopathy. He has been VERY active his whole life, playing football, baseball, basketball and soccer all through high school. He had no symptoms. This was found when getting a physical for college, where he was supposed to play football, and he has been told that is now out of the question. The doctors are saying it’s a very rare condition, and they want to put in a defibrillator ASAP. – Anon.
ANSWER: Left ventricular noncompaction is a cardiomyopathy (disease of the heart muscle) that is rarely diagnosed, but it probably has been under-recognized. It can run in families, so it’s recommended to examine relatives for the condition. It is diagnosed by echocardiogram, and some cases can be identified through genetic analysis.
LVNC can lead to heart failure, arrhythmias and stroke. There is no specific treatment for LVNC, so people with the condition are treated for the manifestations of their disease. For people with heart failure, this means they are treated with the appropriate medications, which hopefully will prevent or at least slow down any damage to the heart. Management also can include an automated internal cardiac defibrillator (AICD) if the heart muscle is seriously weakened.
People with LVNC and a history of serious arrhythmias should get an AICD as well. Since arrhythmias are very common in LVNC, AICDs may be used more frequently than with other causes of heart failure. Also, it is likely that your grandson’s doctor has more expertise than I in managing this condition, and certainly has more knowledge about his heart, so I would take the recommendation for AICD very seriously.
It is strongly recommended he avoid competitive endurance sports and weightlifting.
DEAR DR. ROACH: I’m 40 and was diagnosed with sarcoidosis recently. It was found in my left eye when my eye doctor noticed inflammation. I also was having vertigo and face pain. It wasn’t until I had a PET scan and they biopsied a lymph node that I got the diagnosis.
I am on steroids and recently started taking methotrexate. I’m having horrible side effects (mostly mouth sores and losing my hair), and my original symptoms are coming back. I feel like my doctors don’t know how to treat this disease. I have been told that it is rare in my area. Where can I learn more about this disease and see if there are better and more current treatments? – J.O.
ANSWER: Sarcoidosis is a multisystem disease with an unknown cause. It most often affects younger people and women of African descent. The most commonly affected organs are the eyes and lungs, and lymph nodes are commonly enlarged. The severity can range from quite mild to life-threatening. The diagnosis is confirmed by biopsy.
Initial treatment usually consists of steroids, and methotrexate is often used. However, mouth sores and hair loss are both common complications.
To find an expert with special expertise in treating sarcoidosis, I would start with your closest teaching hospital. Even though you haven’t told me about any lung disease, pulmonologists tend to have expertise in treatment of sarcoidosis, even when it affects organs other than the lungs. Most large hospitals have websites where you can search for doctors with expertise in a certain disease.
Dr. Roach regrets he is unable to answer individual letters, but he will incorporate them in the column whenever possible. Readers may email questions to ToYourGoodHealth@med.cornell.edu.
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