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Heart Disease (Expert Forum)
hypertrophic cardiomyopathy
This forum is for questions and support regarding heart issues such as: Angina, Angioplasty, Arrhythmia, Bypass Surgery, Cardiomyopathy, Coronary Artery Disease, Defibrillator, Heart Attack, Heart Disease, High Blood Pressure, Mitral Valve Prolapse, Pacemaker, PAD, Stenosis, Stress Tests.
hypertrophic cardiomyopathy
by Edidt-Craucamp, Nov 18, 1998 12:00AM
Dr Lever-216-444-6970
Dr Lytle 216-444-6962
Dr Murat Tuzcu 800-CCF-Care
My son Andrew Craucamp was born with hypertrophic cardiomyopathy.He was diagnosed at just over 2 months of age and has been on Isoptin (an Ace inhibitor) ever since,with a Beta blocker added this year.He is now 12 years old.
His heart muscle is approx. 2.5 cm thick and is obstructing the valve.
So far he has coped reasonably well but is growing at a fast rate (10 cm in height and 10 kg in weight in the past 6 months).
Andy is asymtomatic and has had a pretty normal life. Although he is not allowed to participate in sporting activities he is a happy boy and enjoys life.
My problem now is to decide whether to leave well alone (live with the threat of sudden death which I have been doing for the past 12 years) or allow the surgery which reduces the risk of a heart attack and possibly reduces Andy's quality of life.
His doctor strongly recommends surgery.
Although Prof.Levin (pediatric cardiologist) and Prof.Kinsley (pediatric surgeon) in Johannesburg have agreed to do the surgery we would like a second opinion.
We have learned of the method (apparantly practised at your clinic) whereby alchohol is injected into the heart stopping growth of the muscle.
Is this an option for Andy?
I look forward to your response,
Dear Edith
Actually, for the record, Isoptin is a calcium channel blocker, not an ACE inhibitor.
We have done several alcohol ablations for hypertrophic obstructive cardiomyopathy (HOCM) successfully in adults. However, this is still an experimental procedure and the long term effects are unknown. For that reason, we do not perform the procedure on children, nor do we recommend it for children. Surgery is the well established treatment for HOCM and that is what we recommend for children (and for most adults also).
Dr. Sigwart in England and Dr. Seggewiss in Germany perform the procedure, and I believe they may also be trying it in children. You could try to contact them. Again, my bias is towards surgery in children.
I hope this is useful. Feel free to write back with further questions. Good luck.
If you would like to make an appointment at the Cleveland Clinic Heart Center, please call 1-800-CCF-CARE or inquire online by using the Heart Center website at www.ccf.org/heartcenter. The Heart Center website contains a directory of the cardiology staff that can be used to select the physician best suited to address your cardiac problem.
