Re: Hypertrophic Cardio Myopothy

Posted By Aletta on July 10, 1999 at 12:42:55
Sister just diagonsed with Hypertrophic Cardio Myopothy.  Family history:  Father with Wagner's/Stickler's disease (cleft pallet in conjunction with retina tearing away from eye, causing blindness to begin in the 30's).  Father also started having heart attacks in early 40's.
What is this disease?  Were told it is genetic.  Is it tied in with the Wagner's or Stickler's diseases?
CAN DIET AND EXERCISE COMBAT THIS DISEASE.
SHOULD A WOMAN IN HER VERY LATE 30's (me) AVOID PREGNANCY SINCE THIS IS IN THE FAMILY?  
Thankyou!!!
Aletta

[redy-obul]

Posted By reddy obul on July 11, 1999 at 09:41:29
sir, iam diagnoised hocm three years back.presently i have symptoms of shortness of breath on walking.my echo shows lvot gradient of 90 mm hg.septal thickness 21 mm.no arrythima.moderate MR.moderate SAM.can i undergo mycardal ablation at your hospital

[Cleveland Clinic, MD]

Posted By CCF CARDIO MD - CRC on July 12, 1999 at 10:32:35

Dear reddy obul,
With a gradient of 90 mmHg you are definitely at the point where you need some type of intervention.  You would need to be evaluated here to see if you would be better served by alcohol ablation or by surgery.  We do both of these procedures here and have had a good success rate with both. Dr. Harry Lever here is a world expert in this condition and I would highly recommend him if you wish to come to Cleveland for evaluation.  You can make an appointment with him by calling 1-800-CCF-CARE.  If you are coming from overseas our internation office ( 216-444-8184) can assist you in making arrangements for you trip and stay here.  If would also help if you were to obtain copies of all your medical records and tests and send them ahead of your visit to Dr. Lever.  Please feel free to write back with any additional questions.   Below is some general information about HOCM.

HIHSS (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 i>
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are benefits and risks involved.
Additional web sites with information about HOCM are listed below.
http://www.americanheart.org/Heart_and_Stroke_A_Z_Guide/cmyopa.html
HOCM Support group
http://www.kanter.com/hcm/
National Organization for rare diseases
http://www.rarediseases.org/
HOCM of Canada
http://www.cadvision.com/hcmac/hcmac.html
Mayo Clinic HOCM Clinic
http://www.mayo.edu/cv/wwwpg_cv/hocm_cln/hocm.htm
Article on septal ablation
http://www-east.elsevier.com/jac/3102/jac5431fla.htm
More info
http://www.arrhythmia.com/patient/other/HCM.html
I hope you find this information useful.  Information provided in the heart forum is for general purposes only.  Only your physician can provide specific diagnoses and therapies.  Please feel free to write back with additional questions.
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.

[Bernadete]

Posted By Bernadette on July 23, 1999 at 15:26:25
I wrote once before but I failed in making contact. Please excuse me for this repeated question.
I am inquiring on if it is possible to acquire Hypertrophic from toxic fumes?
Thank you.

[Cleveland Clinic, MD]

Posted By CCF CARDIO MD - CRC on July 27, 1999 at 09:05:08
No.  This is almost strictly a hereditary disease.
I hope you find this information useful.  Information provided in the heart forum is for general purposes only.  Only your physician can provide specific diagnoses and therapies.  Please feel free to write back with additional questions.
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.

[Bernadete]

Posted By Bernadette on August 05, 1999 at 23:10:48
Thank you for your reply....But could it be there is no studies to determine that HOCM could be brought on by some other factors?
Would your study totally rule out other factors? Maybe because it's not that kind of disease?
What's the average age to first notice HOCM.  Can the genes of HOCM be prematurely initiated by anything?
                           My Case History
At 39 of age, in October 1997 as a totally healthy woman who seldon even caught the flu, was exposed to some unknown fumes in one case one mans liver began to fail, others had long history of headaches and various ailments.
I had the common symptoms, but about June 1998 my husband begin commented about my heart making a different sound I didn't think it was anything but maybe a racing heart because we were lying close together, being only 2 year married.
In September, during a routine check a new doctor noticed a murmur but it was intermittent.  An ekco found nothing.  I caught the flu in January 1999 and my
heart felt strange.  The emergency doctor was very concerned with my vitals and the heart sound.  The ekco found the HOCM and the murmur hasn't stopped since.
My research has not found any HOCM in the family thusfar on either side.  My internal body has been changing extremely fast.  I'm troubled.
Thank you again, Bernadette












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