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My brother has a HOCM, and for the last two years, I have had palpitations in my pregnancies.  My doctors (OB and family) just dismiss my concerns and our nasty family history of deaths due to heart failures.  With my first pregnancy a year and a half ago, I had an echo, an EKG, and a 24 hour monitor.  They all came back normal, but the cardiologist heard a murmur, and said it was probably pregnancy related.  Then I found out about the HOCM of my brothers this February, and I am a little more concerned.  I was just given another EKG, which was normal, and had to wear another monitor for 24 hours again.  This time the monitor showed the premature beats, but the doctor still wants to wait until after I give birth to do anything.  I don't want the stress of pregnancy, labor and delivery to kill me though.  Should I seek a second opinion?  All I really wanted was to be tested to see if I have the HOCM as well, so I could take the proper precautions that it may evoke.  Shouldn't I try to find out about this early on?  My brother is on medication and restrictions from his HOCM.  I guess I fell ignored because I am in my early 20's yet.  Please help me anyway you can!  Thanks!

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If you did have HOCM it should have showed up on the echocardiogram.  If your doctor is still concerned he could order a second echo to confirm.  Here is some additional information about HOCM.

IHSS (Idiopathic Hypertrophic Subaortic Stenosis), now commonly referred to as HOCM (Hypertrophic Obstructive CardioMyopathy), is a congenital (meaning that it runs in families) condition that results in thickening of the heart muscle (hypertrophy), a increased pressure gradient (obstruction) across the outflow tract and a cardiomyopathy (abnormal function of the heart muscle).  

Symptoms of HOCM include shortness of breath, lightheadedness, fainting and chest pain. Some patients experience cardiac rhythm disturbances which in some cases may lead to sudden death.   Due to this possibility patients with this condition are advised to avoid competitive sports (normal activity levels are OK). The obstruction to blood flow from the left ventricle increases the work the ventricle must do, and a heart murmur may be heard.

The treatment of HOCM may be several fold.  Medications, such as beta blockers and calcium channel blockers, are often given to attempt to decrease the workload of the heart.  Surgery may be recommended in patients with very high pressure gradients in the heart.  In a septal myectomy he surgeon goes into the heart and removes part of the muscle that is obstructing the blood outflow.   A alternative procedure that is being developed here and at several other centers that avoids the need for surgery.  A catheter (tiny tube) is threaded through the leg to the heart and the blood vessels that supply the thickened heart muscle are identified and then closed off with a solution of alcohol.  This results in a thinning of that particular area of the heart.  Not all patients are eligible for this procedure and there are benefits and risks to both procedures.

The issue of sudden death is not addressed by surgical means but rather by the implantation of a device called a defibrillator.  This device is similar to a pacemaker and keeps track of the heart rhythm.  If it detects a life-threatening rhythm it delivers a shock of electricity to the heart to get it back into regular rhythm.  Once again, not everyone is eligible for this device and there are benefits and risks involved.

Additional web sites with information about HOCM are listed below.


HOCM Support group


National Organization for rare diseases


HOCM of Canada


Mayo Clinic HOCM Clinic


Article on septal ablation


More info

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