Hemifacial spasm

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1Active trials27Specialists8Treatment centers

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Hemifacial spasm (HFS) is a neuromuscular movement disorder characterized by involuntary, irregular, tonic or clonic contractions of the muscles innervated by the facial nerve (cranial nerve VII) on one side of the face. The condition typically begins with intermittent twitching of the orbicularis oculi muscle around the eye and may progressively spread to involve other ipsilateral facial muscles, including those of the cheek, mouth, and platysma in the neck. In rare cases, bilateral involvement can occur. The spasms may persist during sleep and can be exacerbated by stress, fatigue, or voluntary facial movements. The most common cause of hemifacial spasm is neurovascular compression of the facial nerve at its root exit zone from the brainstem, most frequently by an aberrant or ectopic blood vessel such as the anterior inferior cerebellar artery or posterior inferior cerebellar artery. Less common causes include tumors, demyelinating lesions, or other structural abnormalities in the posterior fossa. The condition predominantly affects adults, with onset typically occurring in the fourth to sixth decades of life, and has a slight female predominance. Treatment options include botulinum toxin injections, which are considered the first-line therapy and provide temporary relief by weakening the affected muscles. Injections typically need to be repeated every three to six months. Microvascular decompression (MVD) surgery is the only potentially curative treatment, involving the placement of a cushioning material between the offending blood vessel and the facial nerve. MVD has high success rates but carries surgical risks including hearing loss and facial weakness. Oral medications such as carbamazepine, baclofen, and clonazepam may provide modest symptomatic relief but are generally less effective than botulinum toxin or surgery.

Also known as:

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

FDA & Trial Timeline

2 events
Feb 2025Effects of DaxibotulinumtoxinA for Blepharospasm and Hemifacial Spasm

Montefiore Medical Center — PHASE4

TrialRECRUITING
May 2024Study of Abobotulinum Toxin Versus Neubotulinum Toxin Injection For Hemifacial Spasm in Thai Patients

Department of Medical Services Ministry of Public Health of Thailand — PHASE3

TrialNOT YET RECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Hemifacial spasm.

1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

1 recruitingView all trials with filters →
Phase 41 trial
Effects of DaxibotulinumtoxinA for Blepharospasm and Hemifacial Spasm
Phase 4
Actively Recruiting
PI: Anne Barmettler, MD (Montefiore Medical Center/Albert Einstein College ) · Sites: The Bronx, New York · Age: 1899 yrs

Specialists

Showing 25 of 27View all specialists →
AJ
Aaron Jesuthasan
Specialist
1 Hemifacial spasm publication
ID
Indran Davagnanam
Specialist
1 Hemifacial spasm publication
TS
Tabish Saifee
Specialist
1 Hemifacial spasm publication
LZ
Ludvic Zrinzo
Specialist
1 Hemifacial spasm publication
ZZ
Z A Zalyalova
Specialist
1 Hemifacial spasm publication
AR
A A Rogozhin
Specialist
1 Hemifacial spasm publication
IK
I A Khasanov
Specialist
1 Hemifacial spasm publication
GX
Guangfa Xiang
Specialist
1 Hemifacial spasm publication
MS
Minghong Sui
Specialist
1 Hemifacial spasm publication
NJ
Naifu Jiang
Specialist
1 Hemifacial spasm publication
RL
Rui Luo
TORRANCE, CA
Specialist
1 Hemifacial spasm publication
KP
Kwan Park
Specialist
2 Hemifacial spasm publications
AN
Ammar Natalwala
Specialist
1 Hemifacial spasm publication
MP
Ming Zhang, M.D. & Ph.D.
Specialist
PI on 2 active trials
DK
D M Khasanova
Specialist
1 Hemifacial spasm publication
AA
A F Akhatov
Specialist
1 Hemifacial spasm publication
MM
Marcus M Marcet
MEMPHIS, TN
Specialist
PI on 1 active trial
JL
Jeong Jin Lee
Specialist
PI on 2 active trials
KK
kitthisak kithaweesin
Specialist
PI on 1 active trial
SK
Seong-Uk Park, KMD
Specialist
PI on 1 active trial
AB
Anne Barmettler
BRONX, NY
Specialist
PI on 1 active trial
JH
John Harvey
Specialist
PI on 1 active trial
XZ
Xuesheng Zheng
Specialist
PI on 1 active trial
XH
Xingyue Hu
Specialist
PI on 1 active trial
MW
Marshall Wilkinson
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Hemifacial spasm.

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Community

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Latest news about Hemifacial spasm

Disease timeline:

New recruiting trial: Effects of DaxibotulinumtoxinA for Blepharospasm and Hemifacial Spasm

A new clinical trial is recruiting patients for Hemifacial spasm

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about Hemifacial spasm

What is Hemifacial spasm?

Hemifacial spasm (HFS) is a neuromuscular movement disorder characterized by involuntary, irregular, tonic or clonic contractions of the muscles innervated by the facial nerve (cranial nerve VII) on one side of the face. The condition typically begins with intermittent twitching of the orbicularis oculi muscle around the eye and may progressively spread to involve other ipsilateral facial muscles, including those of the cheek, mouth, and platysma in the neck. In rare cases, bilateral involvement can occur. The spasms may persist during sleep and can be exacerbated by stress, fatigue, or volunt

How is Hemifacial spasm inherited?

Hemifacial spasm follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Hemifacial spasm typically begin?

Typical onset of Hemifacial spasm is adult. Age of onset can vary across affected individuals.

Are there clinical trials for Hemifacial spasm?

Yes — 1 recruiting clinical trial is currently listed for Hemifacial spasm on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Hemifacial spasm?

25 specialists and care centers treating Hemifacial spasm are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.