My father is having surgery next month for IHSS and we have been looking for some support groups that we can contact. Also if there is anyone that has had the surgery and is willing to speak to us. We want to here successful cases only please, and from people that had it done at the Cleveland Clinic. Please contact me at ***@**** Thank you for your time.
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.
Additional web sites with information about HOCM are listed below.
My 10 year old son has HCM/IHSS, has had a septal myectomy in 1996 and an ICD implant in 1999. Feeling very alone and confused after my son's diagnosis I started an Internet support group for anyone affected by HCM/IHSS. I am happy to say it is now a rather large group of caring, supportive and understanding people. All members have some sort of connection to HCM/IHSS.... spouse, relative, friend or they themselves have HCM/IHSS. Please feel free to join us at:
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