Each year, about 20,000 children worldwide are diagnosed with Duchenne muscular dystrophy (DMD). If you or a loved one has DMD, it’s important to understand the risks of anesthesia before surgical procedures.

Anesthesia affects skeletal muscles, including the cardiovascular (heart) and respiratory (breathing) muscles, which can be particularly vulnerable in people with neuromuscular diseases like DMD.

Read on to learn more about how anesthesia works, the increased risk for people with DMD, and what you and your or your child’s healthcare team should consider around using anesthesia.

How Anesthesia Works

Anesthesia uses medications to prevent pain and sometimes movement during surgery or other medical procedures. Anesthesiologists (doctors who specialize in anesthesia) administer these medications and monitor you during surgery for any changes or complications. Anesthetics work by temporarily interrupting the pain signals between your nerves and brain.

There are four main types of anesthesia:

• General — Typically used for major surgeries, this type puts you into a controlled unconscious state.
• Local — This type numbs small areas of your body while you remain awake.
• Regional — This type is used for numbing larger parts of the body, such as an arm or a leg, while you remain awake.
• Sedation — Also called monitored anesthesia care, this type of anesthesia makes you drowsy. Levels of sedation range from mild (relaxed but alert) to deep (on the edge of unconsciousness), depending on your procedure.

The Risks Associated With Anesthesia and Duchenne Muscular Dystrophy

Administering anesthesia to people with Duchenne muscular dystrophy can be challenging for several reasons. DMD is a rare genetic condition that leads to progressive muscle weakness and loss. It affects muscles throughout the body — including those that control breathing and heart function. Because of this, people with DMD have an increased risk of complications during anesthesia, including cardiovascular (heart) problems, respiratory issues, and infections. Additionally, certain anesthetic agents can trigger life-threatening conditions such as hyperkalemia (dangerously high potassium levels) and rhabdomyolysis (severe muscle breakdown).

Breathing Problems

People with DMD may develop weakness in respiratory muscles, including the diaphragm, the main muscle used for inhaling. Anesthesia can further impair these muscles, leading to shallow breathing, low oxygen levels, and high carbon dioxide levels.

If you or your child has DMD and requires anesthesia, breathing support such as supplemental oxygen or mechanical ventilation may be necessary. While oxygen therapy can help maintain oxygen levels, too much can reduce the body’s natural drive to breathe. Your healthcare team and anesthesiologist will monitor you closely to make sure your breathing isn’t interrupted during surgery.

Heart Problems

Anesthesia can affect blood pressure and heart rate, even in people without DMD. For individuals with Duchenne muscular dystrophy, these effects can be more serious because the condition weakens the heart muscle and can lead to cardiomyopathy (heart muscle disease). This increases the risk of heart-related complications, such as arrhythmias (irregular heartbeats) or cardiac arrest, during anesthesia.

Hyperkalemia

In people with muscle atrophy (muscle shrinkage and weakening), some anesthetic agents can trigger the breakdown of muscle tissue, releasing large amounts of potassium into the bloodstream. This can cause hyperkalemia, a condition that disrupts heart rhythm and can be life-threatening.

Rhabdomyolysis

Certain anesthetic agents increase the risk of rhabdomyolysis in people with DMD. Rhabdomyolysis is a dangerous condition that causes muscle tissue to break down. The proteins and electrolytes released into the bloodstream can overwhelm the kidneys, potentially leading to kidney failure.

Are People With DMD at Risk for Malignant Hyperthermia?

Scientists once believed that people with DMD were at a higher risk for malignant hyperthermia (MH), a rare but serious reaction to anesthesia. MH causes symptoms including a rapid rise in body temperature and muscle rigidity (stiffness).

However, research has shown that people with DMD are not at increased risk for MH. The confusion arose because hyperkalemia and rhabdomyolysis share similar symptoms with MH. Unlike these conditions, malignant hyperthermia is typically caused by a genetic mutation (change) that disrupts calcium control in muscle cells.

Tests You May Need Before Getting Anesthesia

Most people need medical tests before surgery. These tests help healthcare providers understand any health risks. Beyond a review of your medical history and a physical exam, your doctor may order standard preoperative tests, such as:

• Blood tests — Check for infections, measure blood sugar levels, and assess organ function
• Chest X-ray — Ensure your lungs are clear
• Electrocardiogram (ECG) — Measures your heart’s electrical activity

If you have Duchenne muscular dystrophy, presurgical testing is especially important. Your doctor may order additional heart and lung tests to evaluate how well these organs are working, such as a heart stress test and lung function test.

Your healthcare provider may also order additional blood tests, like a serum creatine kinase (CK) test. This test measures the amount of CK in your blood. CK is a type of enzyme that can leak out of muscle that’s damaged. People who have damaged muscles, like those with DMD, often have high levels of CK in their blood. These results can help your doctor make informed decisions about your procedure and anesthesia plan.

Safe Anesthesia for People With DMD

With careful monitoring, several types of anesthetic agents are considered safe for people with DMD. These include:

• Intravenous anesthetics — Given through a vein, IV anesthesia is generally safe for people with DMD.
• Nitrous oxide — This inhaled anesthetic is considered safe for most people with DMD.
• Local anesthetics — Lidocaine, a commonly used local anesthetic, is typically safe for people with DMD.
• Opioids (narcotics) — These pain-relieving medications can also cause you to fall asleep. Certain opioids are considered safe for people with DMD.
• Muscle relaxants — Used to prevent movement during medical procedures, some types are safe for people with DMD.

Anesthetic Agents To Avoid if You Have DMD

In most situations, people with Duchenne muscular dystrophy should avoid the following:

• Inhaled anesthetics — Certain anesthetic agents you inhale can lead to rhabdomyolysis. These include desflurane, enflurane, halothane, isoflurane, and sevoflurane.
• Succinylcholine — This muscle relaxant is linked to severe hyperkalemia in people with DMD, which can lead to heart complications.

There may be some situations where the benefit of taking one of the above medications outweighs the risk. Your healthcare team will carefully assess what’s safest for you. Make sure you discuss your concerns with them and ask any questions you may have.

Dental Anesthesia and DMD

Many dental procedures can be performed with little or no anesthesia — especially for people with DMD. If you need a dental procedure that requires some sort of anesthesia or sedation, talk to your dentist about safe options, such as local anesthetics or nitrous oxide.

If you have breathing problems and you need general anesthesia for a dental procedure, it may need to be done in a hospital setting. This ensures you receive the specialized care and monitoring needed to prevent breathing or heart-related complications.

Communicate With Your Healthcare Team

DMD affects each person differently. It’s essential to establish good communication with all of your healthcare providers. Make sure your surgical team — including your anesthesiologist — are aware of your DMD diagnosis. Communication with your DMD care team is key to ensuring you have the right plan in place for necessary anesthesia.

Talk With Others Who Understand

On myMDteam, the social network for people with muscular dystrophy and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with MD.

Have you or a loved one with DMD had anesthesia? How did you discuss these concerns with your healthcare team? Share your experience in the comments below, start a conversation by posting on your Activities page, or connect with like-minded members in Groups.