The Chiari Institute (TCI) is the world's first comprehensive, multidisciplinary center for the management of patients suffering from Chiari malformation, a rare structural condition that affects the cerebellum and is associated with disorders including syringomyelia, a chronic disease of the spinal cord.
The staff at The Chiari Institute is committed to the care of patients with complex neurosurgical disorders that have (or could have) resulted from birth defects or inherited diseases that persist into adulthood. These are the so-called “transition” patients whose conditions are poorly understood and for whom treatment may be difficult to find.
Our clinical research was the first to establish a link between the Chiari malformation and inherited disorders of connective tissue such as Ehlers Danlos and Marfan’s syndromes, and we continue this clinical research and outcomes assessment today. It is the commitment of the TCI to identify the underlying causes of the conditions we treat in order to individualize diagnostic testing and treatment.
We strive to remain a world leader in patient care, clinical research and education related to the Chiari malformation and associated conditions.
Our first goal is to individualize the care of individuals with complex, controversial and poorly understood conditions related to the Chiari 1 (The Arnold Chiari) malformation, Chiari 2 (spina bifida) malformation, and syringomyelia, including:
- Tethered spinal cord syndrome
- Craniovertebral instability
- Complex anomalies of the skull base
- Disorders related to abnormalities of intracranial pressure
We treat each patient according to their unique needs and educate them on their conditions. An important part of patient care is to help each patient understand what is actually wrong, how it should be treated, how to assess new or recurrent symptoms, and what to expect if further treatment is needed. This is the essential challenge of being a “transition” patient, and our goal is to empower all our patients to become experts on their disorders.
An equally important goal is to maintain a database of patients treated with these misunderstood conditions to monitor long-term treatment effects.
The educational goals of The Chiari Institute are an important driving force in the work of the Institute. In the last 15 years, we have treated patients from all 50 states and international patients from 40 countries. This national and international recognition of our work earns us the trust of a large number of patients with rare conditions, whom we treat and follow up with over time. The results of their treatments are then used to educate trainees, support groups and the global medical community.
Because the TCI has been privileged to care for a significant number of patients with relatively rare or poorly understood conditions, it is essential to define and classify these disorders, share new knowledge and encourage consensus building. Specifically, we commit to obtaining a consensus on the neuradiological diagnosis of the conditions treated at the TCI. This work is being carried out in cooperation with The Chiari Syringomyelia Foundation and the International Hydrocephalus Imaging Working Group.
The Chiari Institute treats the following conditions:
- Chiari 1 malformation in all its forms (also called “chronic tonsilar herniation,” the Chiari anomaly and a variety of other names)
- Chiari 2 malformation (a more complex abnormality is associated with open forms of spina bifida)
- Tethered spinal cord syndrome
- Instability of the junction of the skull with the cervical spine
- Complex conditions related to the skull base
- Abnormalities of intracranial pressure and cerebrospinal fluid
- Hydrocephalus, including normal pressure hydrocephalus
- Headaches in patients with shunts for hydrocephalus
- Idiopathic intracranial hypertension (also called pseudotumor cerebri)
- Spontaneous intracranial hypotension (low intracranial pressure)
Comprehensive, specialized knowledge
- Chiari-related surgeries are performed daily at the Chiari Institute.
- Our surgeons have been exposed to an endless series of unique cases and have faced and solved complex technical problems.
- Chiari Institute physicians were the first to:
- Find the link between Chiari I malformation and Ehlers-Danlos syndrome in a subgroup of Chiari patients
- Discover and investigate the relationship between Ehlers-Danlos syndrome and functional cranial settling
- Define the link between tonsillar herniation and occult cord tethering in a subgroup of Chiari patients
The Chiari Institute’s patients have come from all 50 states and from 40 foreign countries.