Myectomy: Still the Gold Standard for HOCM

An expert panel comprised of many of the world’s top HCM experts recently published a retrospective analysis in The American Journal of Cardiology which looked at septal myectomy over the last 60 years of practice.

 Beginning with the introduction of the procedure at the National Institute of Health in the early 1960s, this paper surveys the history of the procedure until the present day.  The conclusion of the paper is that myectomy remains the best treatment for patients with obstructive hypertrophic cardiomyopathy.

Continue reading “Myectomy: Still the Gold Standard for HOCM”

VALOR-HCM Trial – Mavacamten vs. Septal Reduction Therapy – RESULTS ARE IN!

The Phase 3 VALOR-HCM trial results were presented this morning at the American College of Cardiology annual meeting in Washington, DC by the principal investigator, Dr. Milind Desai of the Cleveland Clinic, and the results are good!

What was the VALOR-HCM study?

15 – 20  million people worldwide are estimated to have HCM, with 2/3 of this group having the obstructive form which can cause severe symptoms. Historically, these patients have been treated with medications approved for other conditions, and if those don’t relieve symptoms, they are referred on for septal reduction therapies (SRT) like alcohol septal ablation (a catheter based procedure) or septal myectomy (open heart surgery), which are invasive therapies requiring specialized care and which are not widely available.

The VALOR study was designed to compare mavacamten head to head with SRT to see if mavacamten could be a non-invasive treatment alternative for obstructive HCM.

Continue reading “VALOR-HCM Trial – Mavacamten vs. Septal Reduction Therapy – RESULTS ARE IN!”

Fifteen Year Anniversary of Myectomy!

Today it has been 15 years since my septal myectomy at Mayo Clinic!  

 
It’s hard to believe, and lots has happened since my open heart surgery, but I wanted to post today to let everyone know that it was totally worth it. The best decision I ever made.  I have been working full time since the surgery, have been working on this blog and have a busy life as a wife, mother and daughter. 
 
 
Of course the COVID pandemic has been challenging for all of us, but I am grateful for the blessing of the great medical care that has allowed me to continue living my best possible life, even if it is currently limited by the circumstances.
 
If you are on the fence wondering if this surgery is worth it, I am here to tell you it absolutely was.  You can see a collection of resources I gathered about myectomy.  Also, if you are wondering what it is like to visit a place like Mayo Clinic, I wrote a travelogue here.
 
And here are some words from my Mayo Clinic cardiologist, Dr. Steve Ommen, about the role of a specialty center in HCM care. Or you can read a recent interview with Dr. Ommen on Medscape here.
 
Meanwhile, wishing you all good health!

Could Septal Reduction Outcomes Vary by Gender?

A retrospective analysis recently published in JACC: Cardiovascular Interventions suggests that that the risks of septal reduction therapy may differ for men and women.

In particular, the study found that the need for a pacemaker following septal alcohol ablation was almost 3 times more likely for a female than for a male.

The authors suggested that the reason for this difference may have been more advanced disease among female patients, and a higher instance of myocardial fibrosis and calcification.  

Whatever the reason, this is another factor for patients to consider before deciding which method of septal reduction is best for them.

Visiting Mayo Clinic

I had open heart surgery (a septal myectomy) to treat my hypertrophic cardiomyopathy in 2006.  I went back to Mayo twice for the two years following the surgery, but after that I hadn’t felt the need to return since I was regularly following up with my local cardiologist.  In April of 2018, it had been almost ten years since I had been back to Rochester.  So, I decided it was time to take a trip and make sure that all was in order.

Continue reading “Visiting Mayo Clinic”

Cardiac MRI Helps Assess Sudden Death Risk

A recent study by doctors at the Cleveland Clinic suggests that the presence of late gadolinium enhancement  (LGE) should be added to the various risk factors currently used to assess patients who are at low or intermediate risk of sudden death.  The presence and balancing of these risk factors are used by patients and doctors to determine the need for implantable cardiac defibrillators (ICDs).   LGE is an indication of cardiac scar tissue and can be seen on cardiac MRI scans.  This study recommended that LGE comprising a total of 15% or more of left ventricular mass be used as an additional risk factor. The study found that this indicator worked equally well when applied to both obstructed and non-obstructive HCM patients.

Interestingly, an earlier but recent study published by Cleveland Clinic doctors found that the risk factors currently in use to determine the need for an ICD fall short as applied to patients with the obstructive form of HCM.

Risk factors in common use today have been propounded by the American College of CardiologyAmerican Heart Association (ACC/AHA) in the U.S., while a different set of guideline and a mathematical risk calculator was promulgated more recently in Europe by the European Society of Cardiology (ESC).  You can find more about the ACC/AHA and ESC guidelines here.

A second and related finding of this study by the Cleveland Clinic, known for its large HCM program and high volume of myectomies, was that patients who undego  myectomy appear to experience a protective effect from their surgeries.  Even when found to have 25% or more LGE, patients in this study who previously underwent myectomy experienced a lower than expected rate of adverse events.

CNN Chief Jeff Zucker Set for HCM Surgery

According to several news reports, CNN chief and former NBCUniversal head Jeff Zucker is taking six weeks off to undergo elective surgery to treat his hypertrophic cardiomyopathy.  Specific details about the surgery were not revealed.  New York Magazine reported that in 2010 he visited Minneapolis Heart Institute where he was told he needed an implantable defibrillator.

The most common surgery for the treatment of HCM symptoms is a septal myectomy.

See these stories for more info:

Wall Street Journal

Atlanta Journal Constitution

Los Angeles Times

Deadline

Variety

Hollywood Reporter

HCMBeat wishes Mr. Zucker the best of luck during his surgery and recovery.

Here is a link to some resources we have collected for patients who are going through myectomy:  Resources for Patients About Myectomy