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.
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.
A recent study by doctors at the Cleveland Clinic found that current guidelines used to assess risk of sudden cardiac death (SCD) in HCM fall short when applied to the population of patients with the obstructive form of HCM (HOCM).
The study looked at both the European Society of Cardiology (ESC) and American College of Cardiology (ACC)/American Heart Association (AHA) guidelines, and found that both sets of guidelines came up short in predicting SCD. In particular, the study found that patients who had previously undergone myectomy had a reduced risk of SCD that is not accounted for in existing risk models.
Conversely, the study found that patients with atrial fibrillation had a higher risk of SCD, which is also not reflected in the existing risk models.
A companion editorial by Dr. Harzell Schaff of the Mayo Clinic explains the likely reasons for the myectomy findings, while a second accompanying editorial by Dr. John Jefferies of Cincinnatti Children’s Hospital (who has recently accepted an appointment at the U. of Tennessee Health Science Center in Memphis) maintains that the ESC and ACC/AHA guidelines should be changed to reflect the lower SCD risk following myectomy.
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:
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
A high-voltage song from the band AC DC rocks my headset, jolts my brain, legs, arms, and attitude. Deep below the bone-crunching guitar of “It’s A Long Way to the Top (If You Wanna Rock ‘N’ Roll)”, an accompanying hard-driving riff powers something bigger; it goes thump, thump, thump, thump, thump. I’m winded, gasp for air, and my face turns red. When I press my fingers against my sweaty neck, I count 125 thumps a minute and relish every breath.
I’m running sprints and have only been able to listen to my heart beat like this since open-heart surgery at Mayo Clinic. I was diagnosed with hypertrophic cardiomyopathy (my story) a few years ago, a condition that inhibits blood flow because the heart muscle is too thick. I tried medicine, but decided that a procedure to remove a part of that muscle, a septal myectomy, was my best option. Immediately after surgery, a new sound with a steady rhythm and powerful cadence played through my body; this music to my ears was my new and improved heartbeat, which continues today, nearly three years later.
Over this time, I have seen a lot of similar questions about HCM surgery on social media sites. After my positive experience, I wanted to share some HCM CARE tips to help patients and families prepare for surgery:
Help – Prior to surgery; get help at home and at work. Line up a caregiver, friend, or family member for two weeks after surgery. My wife was amazing and without her, I believe I would have suffered setbacks. If you work and have a leave of absence policy, make arrangements as early as possible and try to detach from work during your recovery. In my case, that helped me recover physically and mentally.
Clean – Follow wound prep instructions precisely before and after surgery. Prepare as many laundered clean towels and wash cloths as you can before leaving for the hospital, if possible, at least 20. These need to be clean every day when you get home, so load up. In my case it was also recommended to use liquid, not bar soap.
Meals – Try to buy or prepare two weeks of frozen dinners and lunches. You might not feel like bending over after you return home. This also offers the opportunity eat healthy.
Chair – If you have a seat to recline in, great. I didn’t, and that would be one of my top recommendations. If you can afford to buy a chair or rent one of those seats that props you up, please consider that. The first few weeks after surgery, I felt like a turtle trying to roll upright after tipping over.
Area restaurants and hotels – I live in Rochester, Minnesota and work at Mayo Clinic in Communications, so this experience was easier for me, but a lot of people ask for a list of hotels and restaurants.
Rehab – Studies show that people who participate in rehab have an improved long-term outcome. When I came home, my wife would take me to the mall and I would shuffle from store to store until I built up enough stamina to work out. This report from our Mayo Clinic News Network on my cardiac rehab from about two years ago shows the benefits. Also, if it is offered to you, I recommend massages by an occupational therapist who can work the muscles that have been traumatized. I began this in the hospital and believe it helped me.
Exhale and inhale – My biggest surprise was low lung capacity. Even though my daughters tried to make me laugh in the hospital, I could barely make a squeaking sound. I used a spirometer (not quite like the one in the picture but a smaller version) to learn how to exhale and inhale after being placed on the heart-lung machine during surgery. The goal or incentive of the spirometer is to open the air sacs in your lungs, making it easier to breathe deeply and keep your lungs clear. It is believed that proper usage may speed up your recovery time while reducing your risk of developing pneumonia or other breathing problems.
Additionally, no matter how many pictures and videos as you see before your surgery, it’s still surprising to see wires and tubes coming out of your chest.
Everyone’s experience is unique, so always please keep that in mind. I would go through it again in a heartbeat (pun intended) and as I have said often, the team at Mayo exceeded all of my expectations.
The intense pain following surgery subsided after the first few days and today, I feel decades younger. I have high exercise tolerance and on most days, my overall energy level is very good. However, I occasionally experience bouts of low energy, and when that happens, I try to lay low and sleep. Atypically, my appetite is less than it was prior to surgery and my food tastes have changed. That’s good in that I lost a healthy amount of weight, but bad because I don’t enjoy my wife’s fantastic cooking like I used to. While my heart is doing well, I have experienced frequent back pain over the past few years. I have gone through physical therapy and am told my core is strong, but I continue to address this challenge.
Social media was an invaluable resource to learn about HCM and preparing to make a decision about surgery. In addition to Mayo’s online information about HCM surgery I also found support on the Hypertrophic Cardiomyopathy Forum on Mayo Clinic Connect as well as on Facebook in the Mayo Clinic HCM Patients Group and on the blog by fellow patient Cynthia Burstein Waldman, HCMBeat.
I felt prepared because I read posts and blogs from other patients, conducted a lot of research, and felt informed going into this. I do wish that I would have connected with more patients to learn about the post-operative challenges after going home. My surgery was a great success and I hope this post can help make your experience even better.
For those of you who have had surgery, what tips would you add ?
About Ron Petrovich:
Ron Petrovich has had a long career in journalism and public relations and has worked at Mayo Clinic since 2010. He currently serves as Communications Director, News and News Delivery in Mayo Clinic’s Department of Public Affairs.
Ron was diagnosed with HCM while an employee at Mayo Clinic (see his story here) and now generously shares the benefit of his experience in order to help others on the same journey. You can find him on Twitter @RonaldPetrovich.
Editor’s Note: If you are thinking of visiting Mayo Clinic for HCM treatment, you may also find this post from the SADS Channel blog informative.
According to a recent study by doctors in the Netherlands published in the journal Circulation: Heart Failure, women who had undergone septal myectomy had more diastolic dysfunction and myocardial fibrosis than men who had also undergone myectomy.
Hence, the researchers suggest that sex-specific treatment for HCM may become customary and should be a subject for future inquiry.
These findings raise concern, especially when looked at in conjunction with a recent study by doctors at the Mayo Clinic who found that women with hypertrophic cardiomyopathy have a statistically reduced rate of survival when compared to men with HCM.
Here’s hoping that upcoming researchers will focus their efforts on improved outcomes for women with HCM.
**Because so much HCM information was presented at the Summit, this is the third of multiple blog entries. Stay tuned to HCMBeat for more highlights from the HCM Summit. To see Part I of this series of highlights from the HCM Summit VI, click here and to see Part II of this series click here.**
The symposium was organized by long time HCM expert Dr. Barry Maron and his son, Dr. Martin Maron. Both Marons are now affiliated with Tufts Medical Center’s Hypertrophic Cardiomyopathy Center.
What follows are summaries from selected talks presented at the meeting. The presenter and their hospital affiliation are noted below, along with the topic of their presentation. When possible, you may access the presenters’ slides via hyperlink by clicking on the name. (Note that not all presenters made their slides available).
Alcohol septal ablations (ASA) have been available to HCM patients as a treatment option for the last 20 years. While the procedure has been the subject of great controversy, some physicians have recently advocated for expanded indications of the ASA procedure.
An editorial in this week’s Journal of the American College of Cardiology from the Netherlands argues that the safety of ASA has been firmly established because mortality rates from ASA have been shown to be comparable to those from septal myectomy. The Dutch doctors maintain that past concern about ventricular arrhythmia resulting from the scar left by the ablation have not born out.
Making ASA Safer
Now, they argue, the focus should shift from justifying the procedure toward perfecting the procedure. In particular, the need for additional or repeat procedures must be reduced. Additional procedures have been necessary due to incomplete resolution of obstruction and/or the need for pacemaker implantation due to heart block, neither of which are a common consequence following myectomy. 1 in 10 patients require a pacemaker following ASA, while only 1 in 25 require one following a myectomy. 1 in 13 patients require a subsequent intervention after ASA (either another ASA or a myectomy), which is 15 times the rate of re-intervention after a myectomy.
The researchers’ suggestions for improvement include: 1) performing ASA only in hypertrophic cardiomyopathy centers of excellence that perform high volumes of the procedure; 2) improving patient selection through the use of a multi-disciplinary team which includes a cardiologist specializing in imaging, a cardiac surgeon, and an interventional cardiologist; 3) using 3D myocardial contrast echocardiography in order to select the best vessels; and 4) use of a small targeted amount of alcohol.
Impact of 3D Myocardial Contrast Echocardiography
In particular, the researchers explain that 3 dimensional myocardial contrast echocardiography (MCE) has proven to be a helpful tool in selection of the appropriate septal perforator. The use of MCE has resulted in a change in strategy in 15% to 20% of cases: either by a change in which blood vessel is selected for the alcohol or by prompting the immediate discontinuation of a procedure if the MCE shows that other parts of the heart could be affected. MCE has also improved the success rate of ASA, while allowing for a more compact scar.
Counterpoint Editorial Advocates National Registry to Quantify Results
An accompanying editorial by Dr. Paul Sorajja from Minneapolis Heart Institute argues that we do not have the data necessary to reconcile the differences in outcome between myectomy and ASA. In order to better understand the long-term potential and risks of ASA, mandatory reporting should be required. He points out that this is what is done in other multidisciplinary transcatheter-based therapies, e.g. transcatheter aortic valve replacement for the treatment of aortic stenosis and transcatheter repair of mitral regurgitation with MitraClip. These procedures require: 1) the use of multidisciplinary teams; 2) participation in a national registry (i.e., The Society of Thoracic Surgeons/American College of Cardiology Transcatheter Valve Therapy Registry); and 3) comprehensive reporting of procedural and 1-year outcomes.
Therefore, Dr. Sorajja proposes a national registry created that includes the following information:
- risk factors for sudden cardiac death
- LVOT gradients
- Standardized definitions for procedure success
Since the early 1960s, surgical septal reduction, also known as septal myectomy, has been used as a therapy for the treatment of obstructive hypertrophic cardiomyopathy. Pioneered at the National Institute of Health by cardiac surgeon Dr. Glenn Morrow, himself a HCM patient, septal myectomy has become a mainstay of the HCM treatment arsenal.
For many years, the indications for ASA procedures has been limited to older patients with obstructive HCM who were not otherwise healthy enough to undergo open heart surgery. However, some doctors are now advocating to expand the indications for ASA to include symptomatic younger patients.
(For more information about myectomy and ASA, click here and scroll to bottom of page).
There are distinct stages of HCM and treatments will vary according to the stage. Therefore, it is important, according to a recent article in the Netherlands Heart Journal, for patients to seek treatment from teams experienced in the the treatment of HCM. These professionals are able to recognize transitions in the course of the disease as they occur, and then implement necessary changes in treatment.
In this thorough overview of HCM and its treatment, Dr. Iacopo Olivotto and his colleagues in the Netherlands observe that HCM is seen infrequently by community cardiologists (as compared to more common heart conditions like coronary artery disease). Hence, one of the major difficulties in HCM practice has been identification of patients at highest risk.