If you have hypertrophic obstructive cardiomyopathy (HOCM), you may find it hard to sort through treatment options. You’ve got a lot of choices, but not all of them may be right for you.
Doctors and medical groups like the American Heart Association recommend something called “shared decision making” for HOCM treatment. It’s a way to learn about all your treatment options, their risks, and benefits.
Through shared decision making, you can also let your health care provider know about your own goals so you can figure out what treatment or treatments will be best for you.
What Is Shared Decision Making?
Shared decision making is a way for you and your doctor to work together and come up with a plan to treat your HOCM. While your provider may know the most about HOCM, you are the one who lives with the condition.
Some of the things you and your doctor may talk about include:
- Your testing and treatment options
- The pros and cons of each treatment
- Your personal preferences and goals for the management of your HOCM
- The goals and concerns of anyone else involved in your care, like a partner or your children
Because HOCM is so complex, the American Heart Association suggests finding care at a center that specifically focuses on hypertrophic cardiomyopathy, called a Center of Excellence. You can find a list of centers on the Hypertrophic Cardiomyopathy Association’s website.
Treatment for HOCM
If you have HOCM but don’t have symptoms, you might not need to take medicine right away. At first, you may just see your heart specialist once or twice a year. They will typically do a yearly echocardiogram (an ultrasound of your heart) to watch for changes in your heart’s structure or function.
Your doctor may start you on medicine if you develop HOCM symptoms.
Medications for HOCM
There are different types of medicine for HOCM. Here are some common ones that your doctor may suggest.
These medications act to calm down overactive protein (actin and myosin) signals in your heart. This means your heart doesn’t squeeze as hard.
Some people who take it may also get a lower ejection fraction — their heart can no longer pump blood as well. This side effect goes away once you stop taking the medicine. But your doctor may also adjust your dose so you can keep taking it without this side effect.
Discuss Surgery Options
Doctors typically recommend that you try medication first before you consider surgery. Because everyone is different, your body may do well with medicine. And it’s easier and safer to take a pill than to have surgery.
But if medicines aren’t enough or you have side effects, your doctor may suggest you consider a procedure or surgery for your HOCM.
Outcomes for HOCM surgery
Both procedures work well to improve HOCM symptoms. Myectomy may slightly work better. About 96% of people with HOCM who get myectomy report relief, but only 90% of people who have ASA.
These procedures aren’t recommended for everybody. Your doctor may suggest a myectomy depending on your health, age, and other medical conditions.
Your doctor can help you decide if ASA is a good choice for you. You may also talk about other options like mitral valve repair.
Shared Decision Making and Surgery
If you think you want surgery, here are some questions to ask your doctor. These questions can help you make the best choice for your health:
What are the risks of each?
Both procedures can raise your risk of developing a condition called bundle branch block. This is when the electrical signals that control your heartbeat are delayed or blocked.
Myectomy comes with the risk of left bundle branch block (LBBB), which affects the left side of the heart. ASA raises your risk of a right bundle branch block (RBBB).
On either side, the condition is harmless as long as it only affects one side of your heart. But if you decide to have ASA first, and it’s not successful, your doctor may recommend that you then have a myectomy.
If you then develop BBB on both sides of your heart, you’ll almost certainly need a pacemaker.
How long will I be in the hospital?
If you have a myectomy, you’ll be in the hospital for about five days. If you have ASA, your stay may last two or three days.
What is recovery like?
After a myectomy, you’ll likely go straight into the intensive care unit (ICU). You’ll get the best care here, such as:
- A catheter to drain urine from your body, so you won’t use the toilet to pee.
- A chest drainage tube for a day or two.
- A physical therapist to help get you up and begin walking after 48 hours.
You should be back to your typical energy level in a few weeks.
If you have ASA, you’ll need to lie flat on your back with your legs straight for a few hours after the procedure. This helps minimize any bleeding.
While you are in the hospital, your health care team will watch your heart rhythm carefully. They’ll check to make sure you don’t need a pacemaker. Most people are able to resume normal activities about a week after ASA.
What complications should I look out for after surgery? Up to half of people with HOCM can develop atrial fibrillation (afib) right after surgery. But it usually goes away after a few days. You may also get pleural effusion (fluid in the sac around your lung) and backache. These usually clear up on their own.
Where do you recommend I have it done?
Talk to your doctor about a center that does this complex procedure, myectomies, regularly.
Research shows the more often a surgeon has performed the surgery, the safer and better the operation works. When myectomy is done by a skilled surgeon, life-threatening risks are similar to ASA. And that means life-threatening complications are around 1%, even though myectomy is far more involved.
Ideally, the overall risk of death at the center you choose should be quite low. Most centers that perform a lot of myectomies report fewer than 0.4% deaths. That’s about one death for every 245 myectomies done.
Look for a Center of Excellence on the Hypertrophic Cardiomyopathy Association’s website.
What are the chances that I’ll need a repeat procedure?
Less than 2% of people who have a myectomy need a repeat procedure. For ASA, the chances are higher — around 10%.
Most people who need a repeat procedure after ASA end up having a myectomy.
Lifestyle and Shared Decision Making
Your lifestyle is very important when you have HOCM. There are many ways you can help your heart stay healthy:
You and your doctor can use shared decision making to figure out what’s best for you.
Show Sources
Photo Credit: iStock/Getty Images
SOURCES:
American Heart Association: “Hypertrophic Cardiomyopathy Guideline Encourages Shared Decision-Making, Hypertrophic Cardiomyopathy (HCM).”
Circulation: “2024 AHA/ACC/AMSSM/HRS/PACES/SCMR Guideline for the Management of Hypertrophic Cardiomyopathy: A Report of the American Heart Association/American College of Cardiology Joint Committee on Clinical Practice Guidelines.”
UpToDate: Hypertrophic cardiomyopathy: “Management of patients with outflow tract obstruction.”
Hypertrophic Cardiomyopathy Association: “Myosin Inhibitors,” “Alcohol Septal Ablation,” “Myectomy.”
American College of Cardiology: “Encouraging Shared Decision Making in HCM.”
International Journal of Cardiology: “Cardiovascular outcomes of glucagon-like peptide-1 agonist in patients with obesity and hypertrophic cardiomyopathy.”
Mayo Clinic Press: “Lifestyle steps when managing hypertrophic cardiomyopathy.”
