Living with Moebius Syndrome: What You Need to Know

Moebius syndrome is a rare, congenital neurological disorder that causes weakness or paralysis of one or more cranial nerves. Dr. Babak Azizzadeh and The Facial Paralysis Institute team want to raise Moebius syndrome awareness. That way, Moebius syndrome patients can understand what it is like to live with the disorder. Meanwhile, family members and friends can learn how to support loved ones living with Moebius syndrome.

How Can Moebius Syndrome Affect a Patient?

Research indicates that Moebius syndrome can hamper a patient’s ability to engage with others. Moebius syndrome can affect a patient’s facial muscles and disrupt their ability to smile, frown, and make other facial expressions, which can cause family members, friends, and others to misinterpret what they have to say. This can lead Moebius syndrome patients to avoid social activities, due to fear or apprehension relating to their inability to naturally produce facial expressions. In severe instances, Moebius syndrome patients will avoid work, going to school, and other everyday activities if they feel embarrassed about their inability to clearly and effectively communicate with others.

In addition, Moebius syndrome can cause physical deformities like a short or unusually shaped tongue or missing or misaligned teeth. These deformities can further hinder a Moebius syndrome’s patient ability to communicate with others. They can also impact a Moebius syndrome patient’s appearance, to the point where a patient feels anxious about their appearance and isolates from others.

Moebius syndrome can cause a cleft palate or high or arched mouth opening that disrupts breathing or eating, too. The disorder can even make patients prone to ear infections.

The symptoms of Moebius syndrome vary and can persist for an extended period of time. They can cause patients to feel self-conscious, which can contribute to depression and anxiety. If left undiagnosed and untreated, these symptoms can damage a Moebius syndrome patient’s quality of life.

How to Diagnose and Treat Moebius Syndrome

There is no clinical test that verifies a patient is dealing with Moebius syndrome. Instead, people who experience any symptoms of Moebius syndrome can undergo a medical evaluation in which their symptoms are analyzed. They may also receive specialized testing to rule out any other causes of facial paralysis.

If a patient is diagnosed with Moebius syndrome, several surgical options are available to treat the disorder. These include:

1. Temporalis Tendon Transfer

With a temporalis tendon transfer, a patient’s trigeminal nerve (fifth cranial nerve) is used to achieve facial reanimation. During the procedure, an incision is made around the laugh lines of the mouth. Next, the temporalis tendon is rotated and attached to the corner of the mouth. The result: when the patient opens or closes their mouth, their face moves naturally.

2. Bilateral Gracilis Muscle Transfer to Masseter Nerve

A bilateral gracilis muscle transfer to masseter nerve procedure involves the use of the gracilis muscle from a patient’s inner thigh to help generate spontaneous facial movement. A small portion of gracilis muscle is taken from a patient’s inner thigh and transferred to both sides of their face. Then, the gracilis muscle is attached to the patient’s masseter nerve, which helps the patient chew.

Following a bilateral gracilis muscle transfer to masseter nerve procedure, a patient’s facial movement improves within about six to nine months of treatment. Facial movement continues to improve for several years after treatment, until a patient can once again naturally produce facial expressions.

3. Bilateral Selective Neurolysis

Bilateral selective neurolysis is a revolutionary surgical procedure pioneered by Dr. Azizzadeh, and it provides spontaneous reanimation of the face. During selective neurolysis, activity of a patient’s platysma muscle (which pulls down the corners of the mouth) is reduced. This improves a patient’s ability to naturally smile and generate other facial expressions.

4. Eyelid Reconstruction

Eyelid reconstruction is a viable surgical option for patients who experience strabismus (crossed eyes) or other issues that limit their ability to open and close the eyes. Patients may require gold weights, platinum chains, or eyelid springs. Or, they may qualify for strabismus surgery. With any eyelid reconstruction procedure, the goal is simple: to help a patient improve their vision, tighten their eyelid muscles, and enjoy a balanced, natural-looking facial appearance.

How to Support Someone Living with Moebius Syndrome

People living with Moebius syndrome are susceptible to physical, emotional, and social problems. Fortunately, family members, friends, and others can offer assistance to help these people minimize the impact of Moebius syndrome.

Learning as much as possible about Moebius syndrome and its symptoms can be beneficial. This allows people to understand how Moebius syndrome affects patients and ensures they are well-equipped to identify signs of the disorder.

Along with learning about Moebius syndrome, remaining available to listen to those dealing with the disorder can be helpful. Moebius syndrome can impact a patient in many ways, and the disorder can create substantial challenges for those living with it. But, by providing a listening ear, Moebius syndrome patients can share their concerns and questions with someone they know and receive support during a challenging time.

Encouraging a Moebius syndrome patient to seek out medical treatment can have far-flung effects as well. Moebius syndrome can be treated, particularly if a patient meets with Dr. Azizzadeh and the Facial Paralysis Institute team. If a Moebius syndrome patient receives an evaluation and reviews their treatment options, he or she can take the next step to manage their disorder.

Schedule a Moebius Syndrome Treatment Consultation with Dr. Azizzadeh

Dr. Azizzadeh and the Facial Paralysis Institute team offer in-person and virtual consultations to Moebius syndrome patients. To learn more or to schedule a consultation, please contact us online or call us today at (310) 657-2203.