severe hypertrophic cardiomyopathy

I am a 37 year old female that has hypertrophic cardiomyopathy.  I presented last year with syncope.  Subsequently, I had several tests, and the echo proved that I had severe left ventricular hypertrophy(2.36cm),with no obstruction.  After an electrophisiology test,which suggested I was having Ventricular tach., I was considered high risk and had surgery to implant and AICD.  Recently, I have had shortness of breath, and I was put on atenolol. So far everything is o.k..  

My question is threefold..

1.) My condition is thought to be genetic. What types of testing(other than echo) are available for my children?

2.)Is there a typical "timeline" of events that I can expect to occur with this condition? Or is it very individualistic?

3.)Would a septal myectomy help should the condition become obstructive? Does Cleveland perform this procedure?

Thank You for Your Attention!

[CCF-M.D.-DLB]

1. At this time echo is still the best test. While genetic screening is possible, the echo findings are what would influence clinical decisions.
2. It is highly individual.
3. A septal myectomy is the treatment of choice for obstructive symptoms that cannot be controlled with medication. It is an uncommon surgery, but we perform a lot of them here. We are also investigating alcohol septal ablation, which is a catheterization-based procedure to treat obstruction.

[irisindra]

Hi,

I'm 32, F, and have Familial Hypertrophic Cardiomyopathy. Mine is left ventrical, up the outside edge and a little at the apex of the septum, but no obstruction.

You don't say how old your kids are. The hypertrophy tends to show up in kids as they grow. I developed a murmur at 13 and my brother at 8. By 14 I was medicated and by 12 my brother had his first atrial fibrillation.

My mom's hypertrophy reverted after 20 years of betablocker usage, but she still needs rhythm control.

Everyone's condition progresses at its own rate. Talk to your doctor about getting enough vitamins, yoga, and non-med things you can do to help your heart.

You can e-mail me at ***@****.

Iris

[Neale]

Hi:

I tried your e-mail, it is not available.  

My children are 9,7,4.  They have had echos and will continue until they are in their 30's.

I have an appointment at the Cleveland Heart Clinic in April.  Hopefully, the Dr. will be able to further inform me of my condition and the options for myself and my family.

Thanks for your comment.
Tricia

[tor]

What does your syncope feel like? I am having near syncope and left ventricle hypertrophy. My near syncope events are followed by irritability lasting several hours. Are yours?

[Neale]

Hi;

I have not had syncope since I had the defibrillator placed.  However, when I did, I had virtually no warning that it was coming..I didn't even know I had a problem at the time.  

The syncope was immediate and only lasted 15-20 seconds.  When I came to, I would be sweaty and nauseated, and weak. Then, I would feel light headed and have cloudy thinking for quite awhile.

I hope you don't ever actually pass out.

Hope this helps.