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Research for Chiari 1 Malformation


The Chiari Care Center is conducting the following funded research studies:

  • Prospective evaluation of release of tethered spinal cord in patients with Chiari I Malformation, Syringomyelia, or Scoliosis.

    This study, funded by C&S Patient Education Foundation (Conquer Chiari), is investigating the clinical presentation and outcome following surgery in patients with the tethered spinal cord.
  • Development of the Chiari Symptom Profile

    This is an instrument that is being developed to assess the symptoms related to Chiari malformation/ syringomyelia and how the symptoms affect the individual's quality of life. The study is funded in part by Conquer Chiari.


The Chiari Care Center has refined the surgery for the Chiari I Malformation and for the Tethered Spinal Cord to make them less invasive with a speed recovery.

Innovations include:

  • Graft Material

    A simplified approach using templates has been developed for obtaining custom-shaped graft material from under nearby scalp. By using a person's own tissue (pericranium) to expand the dura in Chiari decompression surgery, the need for revision surgery for spinal fluid leak has been decrease to about 1%.
  • Posterior Fossa Reconstruction

    Traditionally, the area where the skull bone has been removed during Chiari decompression has not been reconstructed. The muscle tissues have been closed over the dura membrane. While this works well for many patients, some patients develop a "soft spot" headache and may be very sensitive to pressure or weather changes in the area.

    In 2004, in collaboration with Biomet Microfixation, Dr. Oro' developed a customized titanium plate to reconstruct a portion of the skull removed during decompression surgery. The plate helps reduce the chances of "soft spot" headache and provides a surface for re-attachment of the musculature in the back of the skull and helps avoid the sunken defect that some persons develop following decompression surgery.
  • Minimally Invasive Approaches

    The Chiari Care Center is a pioneer in the minimally invasive treatment of the Chiari malformation and the release of the tethered spinal cord. In collaboration with NuVasive, the MaxAccess Retractor has been modified for use in posterior fossa decompression. This customized retractor allows for direct microscopic visualization of the area of surgery through a smaller incision than standard retractors.

    Surgery for the release of tethered cord is performed in many patients using a 3 cm incision (about 1 1/4 inches). Using a microsurgical technique, the filum terminale (fibrous band at the end of the spinal cord) can be snipped to reduce tension on the cord.


The specialists at The Chiari Care Center have published leading articles in the field including:

  • Posterior fossa decompression and reconstruction in adolescents and adults with the Chiari I malformation.

    Oro' JJ, Mueller  DM.     
    Neurological Research, 33(3), 2011, p 261-271.
    The paper presents an in-depth reveiw of current and historical surgical approaches to the treatment of Chiair I malformaition.     
  • The Chiari Book: A Guide for Patients, Families and Health Care Providers.

    Oro', JJ., Mueller DM.
    The handbook presents a comprehensive review of the evaluation and treatment of Chiari malformation and syringomyelia. 
    BookSurge Publishing, 2008.                                                                                                       
  • Prospective Analysis of Presenting Symptoms in 265 Patients with the Chiari I Malformation with or without Syringomyelia

    Mueller DM, Oro JJ
    Journal of the American Academy of Nurse Practitioners. 16(3):134-138, 2004
    One of the largest studies defining the broad range of symptoms in patients with the Chiari I malformation, this research study is also the first to document an emotional component of CM-I.
  • The Chiari I Malformation with and without Syringomyelia and Pregnancy: Case Studies and Review of the Literature.

    Mueller DM, Oro JJ:
    American Journal of Perinatology. 22(2):67-70, 2005.
    This report is one of the few articles in the medical literature on the role of pregnancy in the Chiari I malformation and syringomyelia.
  • Prospective analysis of self-perceived quality of life before and after posterior fossa decompression among 112 patients with Chiari malformation with or without Syringomyelia.

    Mueller DM, Oro JJ:
    Neurosurgical Focus. 2005 Feb 15;18(2): ECP2.
    One of the largest outcome studies performed in patients who have undergone surgery for the Chiari I malformation. The study is also the only one to measures outcome using a verified quality of life outcomes measure, The Sickness Impact Profile.
  • Arachnoid cyst resulting in tonsillar herniation and syringomyelia in a patient with achondroplasia: a case report.

    Bauer A, Mueller DM, Oro JJ:
    Neurosurgical Focus. 2005 Nov 15;19(5):E14
    There are several "secondary" causes of Chiari malformation including tumors and arachnoid cysts. This report describes a rare case of an arachnoid cyst causing herniation of the cerebellar tonsils in a patient with achondroplasia.
  • Phenotypic definition of Chiari type I malformation coupled with high-density SNP genome screen shows significant evidence for linkage to regions on chromosomes 9 and 15.

    Speer MC & multiple authors including Oro JJ & Mueller DM
    American Journal of Medical Genetics. 140(24): 2776-2785, 2006.
    This multicenter trial directed by researchers at Duke University is one of the first studies investigating the role of genetics in the development of the Chiari I malformation.