Semicircular canal dehiscence syndrome

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3Specialists8Treatment centers

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Overview

Semicircular canal dehiscence syndrome (SCDS) is a rare condition of the inner ear where one or more of the bony walls surrounding the semicircular canals — the tiny fluid-filled tubes that help you balance — develop a thin spot or hole (called a dehiscence). The most common form is superior semicircular canal dehiscence syndrome (SSCD or SCDS), where the gap occurs in the canal closest to the top of the skull. This opening creates an abnormal third 'window' in the inner ear, which disrupts how sound and pressure are processed. The condition can affect one ear or both ears. People with SCDS often experience a confusing mix of hearing and balance problems. Loud sounds or pressure changes — like straining, coughing, or blowing your nose — can trigger dizziness or eye movements. Some people can actually hear their own heartbeat, eye movements, or footsteps inside their head. These unusual symptoms are often misdiagnosed for years before the correct cause is found. Treatment ranges from lifestyle changes and hearing aids for mild cases to surgery to repair the bony defect for more severe cases. Surgery (called plugging or resurfacing of the canal) can significantly reduce or eliminate symptoms in many patients. While the condition is not life-threatening, it can seriously affect quality of life, work, and daily activities.

Also known as:

Key symptoms:

Dizziness or spinning sensation triggered by loud soundsDizziness triggered by straining, coughing, sneezing, or blowing your noseHearing your own heartbeat loudly inside your head (pulsatile tinnitus)Hearing your own eye movements, footsteps, or voice abnormally loudlyA feeling of fullness or pressure in the earUnsteadiness or poor balance, especially in noisy environmentsEye movements or bouncing vision triggered by loud sounds or pressureLow-frequency hearing lossSensitivity to sound (hyperacusis)Brain fog or difficulty concentratingFatigue related to constant balance effortHearing internal body sounds like chewing or your own breathing very loudly

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

8 events
Apr 2026Effect of Acupuncture on Psychoneurological Symptom Cluster in Breast Cancer Survivors

First Teaching Hospital of Tianjin University of Traditional Chinese Medicine — NA

TrialNOT YET RECRUITING
Mar 2026Lidocaine for Opioid Sparing in Vaso-occlusive Crisis of Sickle Cell Disease

Nantes University Hospital — PHASE3

TrialNOT YET RECRUITING
Feb 2026The Diagnostic Accuracy of Ankle Audiometry Performed With the B250 for Superior Canal Dehiscence Syndrome in Patients Affected by Pulsatile Tinnitus and/or Autophony Disorders

Region Stockholm — NA

TrialNOT YET RECRUITING
Mar 2025Mechanisms And Prognosis of Stroke-Heart Syndrome

Chensheng Pan

TrialRECRUITING
Jan 2025Tampere Coronary Artery Disease and Sudden Cardiac Arrest Study

Tampere Heart Hospital

TrialRECRUITING
Nov 2024Longitudinal Evaluation of Active-Duty Personnel with Accessory Pathways (LEAD-AP)

United States Naval Medical Center, San Diego

TrialACTIVE NOT RECRUITING
Jan 2022Monitoring of Anti-SARS-CoV-2 (COVID 19) and Encapsulated Vaccination Patients With Thalassemic and Falcemic Syndromes

Società Italiana Talassemie ed Emoglobinopatie

TrialACTIVE NOT RECRUITING
Apr 2004Natural History of Sickle Cell Disease

National Heart, Lung, and Blood Institute (NHLBI)

TrialRECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Semicircular canal dehiscence syndrome.

View clinical trials →

No actively recruiting trials found for Semicircular canal dehiscence syndrome at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Semicircular canal dehiscence syndrome community →

Specialists

3 foundView all specialists →
LL
Larry Lundy
JACKSONVILLE, FL
Specialist
PI on 1 active trial
YD
Yohan GALLOIS, Dr
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 Semicircular canal dehiscence syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Semicircular canal dehiscence syndrome

Disease timeline:

New recruiting trial: Tocilizumab for Acute Chest Syndrome

A new clinical trial is recruiting patients for Semicircular canal dehiscence syndrome

New recruiting trial: Natural History of Sickle Cell Disease

A new clinical trial is recruiting patients for Semicircular canal dehiscence syndrome

New recruiting trial: Tampere Coronary Artery Disease and Sudden Cardiac Arrest Study

A new clinical trial is recruiting patients for Semicircular canal dehiscence syndrome

New recruiting trial: Mechanisms And Prognosis of Stroke-Heart Syndrome

A new clinical trial is recruiting patients for Semicircular canal dehiscence syndrome

New recruiting trial: International Spontaneous Coronary Artery Dissection (SCAD) "iSCAD" Registry

A new clinical trial is recruiting patients for Semicircular canal dehiscence syndrome

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.

Questions for your doctor

Bring these to your next appointment

  • Q1.Is my CT scan showing a true dehiscence, and how large is the gap?,Am I a good candidate for surgery, and which surgical approach would you recommend for me?,What are the risks of surgery, including the chance of hearing loss or worsening balance?,What happens if I choose not to have surgery — will my condition get worse over time?,Are there any lifestyle changes or devices that could help manage my symptoms without surgery?,How many of these surgeries have you performed, and what are your outcomes?,Should I see a vestibular rehabilitation therapist before or after surgery?

Common questions about Semicircular canal dehiscence syndrome

What is Semicircular canal dehiscence syndrome?

Semicircular canal dehiscence syndrome (SCDS) is a rare condition of the inner ear where one or more of the bony walls surrounding the semicircular canals — the tiny fluid-filled tubes that help you balance — develop a thin spot or hole (called a dehiscence). The most common form is superior semicircular canal dehiscence syndrome (SSCD or SCDS), where the gap occurs in the canal closest to the top of the skull. This opening creates an abnormal third 'window' in the inner ear, which disrupts how sound and pressure are processed. The condition can affect one ear or both ears. People with SCDS o

How is Semicircular canal dehiscence syndrome inherited?

Semicircular canal dehiscence syndrome follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Semicircular canal dehiscence syndrome typically begin?

Typical onset of Semicircular canal dehiscence syndrome is adult. Age of onset can vary across affected individuals.

Which specialists treat Semicircular canal dehiscence syndrome?

3 specialists and care centers treating Semicircular canal dehiscence syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.