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UPRIGHT MRI LOCATIONS The UK: Upright MRI UK The European Scanning Centre Medserena upright MRI center The rest of Europe: Premier Healthcare Germany If you're aware of any other clinics within europe, that offers upright MRIs, please contact us here , so it can be added to the list! The US: Upright MRI - Colorado Upright MRI - Deerfield Open upright MRI - Missouri American Dynamic Imaging - San Antonio, Texas MUSC - Charleston South Carolina Rayus radiology - multiple locations Vision Upright MRI - San Jose, California Upright MRI - New mexico East Bay Upright MRI - California Washington Open MRI - Maryland Canada: Welcome back - British Columbia, Canada If you're aware of any other clinics within the US or Canada, that offers upright MRIs, please contact us here , so it can be added to the list!

NeuroSpine Connections is a patient run resource focusing on craniocervical instability and comorbidities NeuroSpine Connections Join our facebook group and become part of the community Facebook BROWSE CONDITIONS CCI + AAI Chiari malformation Tethered cord CSF leak Intracranial hypertension AND MORE Help keep this site running! This site depends on donation to stay open. Can you spare $1 to help us, help patients? Our Story Read More Get to Know Us This site was created by a patient, for patients, with a hope of providing an information hub with reputable sources yet still easy to understand, despite brainfog.

MEASUREMENTS MEASUREMENTS AND WHAT THEY MEAN Atlanto-dental interval - ADI The ADI measures the distance between: Anterior Arch of the Atlas (C1): The front part of the first cervical vertebra (C1). Dens of the Axis (C2): The peg-like structure on the second cervical vertebra (C2), which fits into the atlas and allows rotation of the head. An abnormal ADI suggests Atlantoaxial Instability (AAI) due to transverse ligament laxity Basion-axial interval - BAI The Basion-Axial Interval (BAI) measures the distance between the basion (the midline bony prominence at the anterior margin of the foramen magnum) and the posterior aspect of the odontoid process (dens) of the axis (C2). It is assessed in lateral radiographs of the cervical spine. Basion: This is the point at the midline of the anterior part of the foramen magnum, located where the base of the skull meets the cervical spine. Odontoid process (dens): This is the peg-like projection of the second cervical vertebra (C2), which articulates with the atlas (C1) to enable head rotation. An abnormal BAI suggests instability at the craniocervical junction Basion-dens interval - BDI The Basion-Dens Interval (BDI) measures the distance between two structures: Basion: The anterior part of the foramen magnum, which is a bony prominence at the base of the skull. Dens (Odontoid Process): The peg-like structure that projects upward from the second cervical vertebra (C2) and fits into the atlas (C1) to allow rotation of the head. An abnormal BDI suggests instability at the craniocervical junction Clivo-axial angle - CXA The Clivo-Axial Angle (CAA) measures the angle formed by two lines: Clivus Line: This line is drawn along the clivus, a sloped bony plate at the base of the skull. The clivus forms part of the posterior surface of the sphenoid bone and extends to the basilar part of the occipital bone, anterior to the foramen magnum. Axis Line: This line is drawn along the body of the axis (C2 vertebra), which is the second cervical vertebra that supports the dens (odontoid process). The dens fits into the atlas (C1) and allows for head rotation. The angle formed by the intersection of these two lines (the Clivo-Axial Angle) reflects the relationship between the base of the skull and the cervical spine, which is crucial for craniovertebral junction alignment. An abnormal CXA indicates ventral brainstem compression or potential stretching/kinking of the brainstem Power's ratio The Powers Ratio measures the relative alignment of the dens (odontoid process) of the axis (C2) vertebra with respect to the posterior arch of the atlas (C1). The measurement is typically used in lateral radiographs or CT scans of the cervical spine to assess for any displacement or instability in the craniovertebral junction. An abnormal Power's ratio suggests atlanto-occipital dislocation (AOD) The Grabb-Oakes Measurement specifically evaluates the relationship between the odontoid process (dens) of the second cervical vertebra (C2) and the posterior arch of the atlas (C1). The measurement looks at how far the dens protrudes into the atlas, which is an important indicator of whether the atlantoaxial joint is unstable or not. An abnormal GOL suggests a high risk of ventral brainstem compression due to instability Grabb-oakes line(GOL) Translational measurements are done on dynamic imaging to calculate the difference between flexion and extension. Translational BAI is used to assess how much the skull slides between different positions which indicates instability. Translational measurements Upright dynamic imaging vs supine When you’re upright, gravity pulls the head downward, placing the most stress on the ligaments and joints of the upper cervical spine (occiput–C1–C2). If those ligaments are lax or damaged (as in CCI or AAI), the skull can subtly sink or shift, causing: brainstem or spinal cord compression, obstruction of cerebrospinal fluid (CSF) flow, stretching of the vagus or accessory nerves, and mechanical strain on vascular or neural structures. In a supine MRI, gravity is off-loaded — the head is supported by the table, and much of that pathological movement disappears, leading to false negatives. Static MRIs or CTs (taken while lying still) only show the bones, ligaments, and alignment in one neutral position. But instability means abnormal movement between vertebrae — something that often only becomes visible when the head and neck move (flexion, extension, rotation). Therefore, someone may have “normal” alignment on a neutral MRI, but their joints could sublux or shift abnormally when the neck moves, causing brainstem or cord compression that isn’t seen in neutral imaging. SOURCES https://pmc.ncbi.nlm.nih.gov/articles/PMC10020271/ https://pmc.ncbi.nlm.nih.gov/articles/PMC9609512/ https://pubmed.ncbi.nlm.nih.gov/30627832/ https://www.researchgate.net/publication/356842266_Craniocervical_Instability_in_Ehlers-Danlos_Syndrome_-_A_Systematic_Review_of_Diagnostic_and_Surgical_Treatment_Criteria https://radiopaedia.org/home

Top of Page AAI Brainstem+ CCI Chiari Cognition Comorbidities CSF leaks EDS IIH Physical therapy Spinal fusion Tethered cord Log In Webinars & lecture videos Below you'll find a collection of informative videos from lectures and webinars by leading specialists. AAI AAI All Categories Play Video Play Video Atlanto-axial Rotary Instability Findings and Treatment Outcomes Research - Dr. Fraser Henderson Help share more videos and continue meetings like this by donating to Bobby Jones CSF: https://bit.ly/bjcsfdonate Dr. Fraser Henderson shares: Atlanto-axial rotary instability (fielding type 1): characteristic clinical and radiological findings, and treatment outcomes following alignment, fusion, and stabilization. This presentation was given at the 2020 Bobby Jones CSF Research Colloquium held on Friday, September 18, 2020 and was presented entirely online. (2020) For more information and educational materials, visit our website: https://bobbyjonescsf.org Connect with Us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video CSF presents Atlanto-Axial Instability Help share more info like this by donating now: http://csfinfo.org/donate-online/ Dr. Steven Hwang gives a lecture at the CSF Colloquium on October 19, 2013. See also Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Google+ Page: http://google.com/+CsfinfoOrg AAI Brainstem+spinal cord All Categories Play Video Play Video 2019 Think Tank: "Cervical Medullary Syndrome & Cranial Instability" - Fraser Henderson, MD Help share more videos like this by donating to Bobby Jones CSF: http://ow.ly/RLvc50uoPdN Once overlooked, more and more experts are understanding how critical a role instability plays in the treatment of some Chiari and related disorder patients. Because this instability is often caused by co-morbidities such as hypermobility/Ehlers-Danlos syndrome, that can further complicate treatment in these patients. Dr. Fraser Henderson describes the results of his ongoing, long-term study following patients who received craniocervical fusions to correct instability as a treatment method for "cervical medullary syndrome", which includes syndromes such as Chiari, dysautonomia and more. These results are reported five-years out of initial fusion surgery and prove very promising as a means of treatment in patients whose symptoms stem specifically from cranial instability. This presentation was given at the 2019 Bobby Jones CSF Think Tank Meeting in San Diego, CA. (2019) For more information and educational materials, visit our website: https://csfinfo.org To learn more about Bobby Jones CSF, visit our new website: https://bobbyjonescsf.org See also: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video CSF Colloquium: "The Sarah Syndrome" Help share more videos like this by supporting CSF: http://csfinfo.org/donate-online/ Dr. Harold Rekate talks about "the Sarah syndrome" at the 2014 CSF Research Colloquium in Boston, MA, which includes Chiari I malformation, dysautonomia, fibromyalgia, Ehlers-Danlos syndrome, and craniocervical instability. For more information, visit our website: http://csfinfo.org See also: Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Instagram: http://instagram.com/uniteatnight Google+ Page: http://google.com/+CsfinfoOrg Play Video Play Video CSF Colloquium: "Acute & Chronic Trauma of the Craniocervical Junction" Help share more videos like this by supporting CSF: http://csfinfo.org/donate-online/ Dr. Donlin Long lectures at the 2014 CSF Research Colloquium in Boston, MA on acute and chronic trauma to the upper cervical spine (craniocervical junction) For more information, visit our website: http://csfinfo.org See also: Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Instagram: http://instagram.com/uniteatnight Google+ Page: http://google.com/+CsfinfoOrg Play Video Play Video CSF presents Deformative Stress due to Chronic Repetitive Trauma Help share more info like this by donating now: http://csfinfo.org/donate-online/ Dr. Edward Benzel lectures at the CSF Colloquium on October 19, 2013 in San Francisco, CA. "Deformative Stress on the Central Nervous System as it Pertains to Chronic Repetitive Trauma" See also Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Google+ Page: http://google.com/+CsfinfoOrg Play Video Play Video CSF presents Clinical Patterns Seen with Cervical Medullary Syndrome Help share more info like this by donating now: http://csfinfo.org/donate-online/ Dr. Roger Kula lectures at the CSF Colloquium on October 19, 2013 in San Francisco, CA. See also Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Google+ Page: http://google.com/+CsfinfoOrg Brainstem+spinal cord Brainstem+ CCI All Categories Play Video Play Video Craniocervical Instability Lecture Dr.Vicenç Gilete. Lund (Sweden) Craniocervical Instability, atlantoaxial instability and subaxial instability in hypermobility, Ehlers Danlos patients and whiplash patients. Play Video Play Video Craniocervical Instability (Dr Henderson the 2012 EDNF Confrence) For more information on CCI visit http://www.thepainrelieffoundation.com/craniocervical-instability/ Craniocervical Instability (Dr Henderson the 2012 EDNF Confrence) Play Video Play Video 2019 Think Tank: "Cervical Medullary Syndrome & Cranial Instability" - Fraser Henderson, MD Help share more videos like this by donating to Bobby Jones CSF: http://ow.ly/RLvc50uoPdN Once overlooked, more and more experts are understanding how critical a role instability plays in the treatment of some Chiari and related disorder patients. Because this instability is often caused by co-morbidities such as hypermobility/Ehlers-Danlos syndrome, that can further complicate treatment in these patients. Dr. Fraser Henderson describes the results of his ongoing, long-term study following patients who received craniocervical fusions to correct instability as a treatment method for "cervical medullary syndrome", which includes syndromes such as Chiari, dysautonomia and more. These results are reported five-years out of initial fusion surgery and prove very promising as a means of treatment in patients whose symptoms stem specifically from cranial instability. This presentation was given at the 2019 Bobby Jones CSF Think Tank Meeting in San Diego, CA. (2019) For more information and educational materials, visit our website: https://csfinfo.org To learn more about Bobby Jones CSF, visit our new website: https://bobbyjonescsf.org See also: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video "Five-Year Follow Up of Craniocervical Fusions" - Fraser C. Henderson, MD Help share more videos like this by donating to Bobby Jones CSF: https://bobbyjonescsf.org/donate-online/ Dr. Fraser Henderson reviews what we are learning about the effectiveness of fusion neurosurgery in the treatment of medical conditions like Chiari malformation (especially complex Chiari), craniocervical instability, Ehlers-Danlos syndrome and other connective tissue disorders as well as other conditions where fusion may be indicated. This presentation was given at the 2018 unite@thehill in Bethesda, MD, just ahead of the walk to The Hill in Washington, DC. For more information, visit our website: https://bobbyjonescsf.org Connect with us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video “Craniocervical Fusion for Craniovertebral Instability” - Justin N. Virojanapa, DO Thank you, Cheribundi https://cheribundi.com , for sponsoring the 2018 CSF Research Colloquium! Help share more videos like this by donating to Bobby Jones CSF: http://ow.ly/RLvc50uoPdN Dr. Justin Virojanapa talks about his work with patients suffering from a so-called "Sara Syndrome", which is a form of cervical medullary syndrome with craniocervical instability. Dr. Virojanapa discusses the experience at his institution using craniocervical fusion surgery to manage various neurological and autonomic symptoms in patients with this type of instability and condition. This lecture was given at the 2018 CSF Research Colloquium, held in Houston, Texas. (2018) For more information, visit our website: https://csfinfo.org To learn more about Bobby Jones CSF, visit our new website: https://bobbyjonescsf.org See also: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video CSF Colloquium: "Various Forms of Craniocervical Stabilization" Help share more videos like this by supporting CSF: http://csfinfo.org/donate-online/ Dr. Paolo Bolognese discusses he various ways in which neurosurgeons correct for instability in Chiari patients, during surgery. For more information, visit our website: http://csfinfo.org See also: Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Instagram: http://instagram.com/uniteatnight Google+ Page: http://google.com/+CsfinfoOrg Play Video Play Video CSF presents Clinical Patterns Seen with Cervical Medullary Syndrome Help share more info like this by donating now: http://csfinfo.org/donate-online/ Dr. Roger Kula lectures at the CSF Colloquium on October 19, 2013 in San Francisco, CA. See also Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Google+ Page: http://google.com/+CsfinfoOrg Play Video Play Video CSF presents The Hypermobile Spine Help share more info like this by donating now: http://csfinfo.org/donate-online/ Dr. Brad Tinkle lectures at the CSF Colloquium on October 19, 2013 in San Francisco, CA. See also Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Google+ Page: http://google.com/+CsfinfoOrg Play Video Play Video CSF presents "Neurological and Spinal Disorders in EDS" - Dr. Sunil Patel Help share more info like this by donating now: http://csfinfo.org/donate-online/ Dr. Sunil Patel discusses the various neurological and spinal disorders that are commonly associated with Ehlers-Danlos syndrome, which is a disorder caused by a defect in the individual's connective tissue. This connective tissue disorder seems to run in families and there are different types of EDS, the most common of which is hypermobile type. For more information and educational materials, please visit our website: http://csfinfo.org/ See also Facebook: facebook.com/csfinfo Twitter: twitter.com/CSFinfo Pinterest: pinterest.com/csfinfo Instagram: instagram.com/uniteatnight Google+ Page: http://goo.gl/VTtwL Play Video Play Video Craniocervical Instability in Hypermobile EDS - Jane R. Schubart, PhD & Fraser C. Henderson, Sr., MD Help share more videos like this by donating to Bobby Jones CSF: https://bit.ly/bjcsfdonate Craniocervical instability can be particularly disabling for some individuals. Surgical fusion of the unstable vertebrae has been suggested as a treatment for the symptoms that are often seen in these patients. Dr. Henderson and Dr. Schubart describe a retrospective outcomes study of patients who underwent craniocervical fusion who had a diagnosis of hypermobile Ehlers-Danlos syndrome or some clinical hypermobility with radiological evidence, severe head/neck pain, symptoms of cervical medullary syndrome, neurological deficits, and for whom all non-operative treatment had previously failed. The results were promising that there may be benefit to fusion surgery in this smaller patient population. This presentation was given at the 2021 Think Tank meeting, which was held virtually on Saturday, August 25th. (2021) Connect with Us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video "The Case for Addressing Cranio-cervical Instability" - Fraser Henderson, MD Help share more videos like this by donating to Bobby Jones CSF: http://ow.ly/RLvc50uoPdN Stretching of the nerves in the brain caused by compression around the cranio-cervical junction can cause a host of different symptoms and problems. Some stretching of the nerves may even alter gene expression. This stretch is often brought on by different disorders that cause cranio-cervical instability. Dr. Henderson makes the case, therefore, that instability is something that must be considered in differential diagnoses when assessing patients with conditions at the level of the cranio-cervical junction. This is especially for patients who struggle with disorders that may require neurosurgical treatment, as successful surgery may require proper assessment of stability issues. This lecture was presented at the 2019 London Roundtable, provided in partnership with the Ehlers-Danlos Society, discussing issues including dysautonomia, connective tissue disorders, Chiari malformation and related syndromes. (2019) For more information and educational materials, visit our website: https://bobbyjonescsf.org Connect with Us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video CSF presents "Physical Therapy in Patients with Craniocervical Instability & Chiari" Help share more info like this by donating now: http://csfinfo.org/donate-online/ Dr. Michael Healy discusses physical therapy in patients with instability who have undergone Chiari decompression surgery and provides some live demonstrations. For more information and educational materials, please visit our website: http://csfinfo.org/ See also Facebook: facebook.com/csfinfo Twitter: twitter.com/CSFinfo Google+ Page: http://goo.gl/VTtwL CCI CCI Chiari All Categories Play Video Play Video Urology Issues in Chiari, EDS & Connective Tissue Disorders - Dr. Jonah Murdock Help share more info like this by donating now: http://csfinfo.org/donate-online/ Dr. Jonah Murdock, one of the most experienced neuro-urologists in the United States spoke at the CSF Chapter meeting in Lanham, Maryland on January 11th. Dr. Murdock spoke about urological issues in patients with connective tissue disorders and hypermobility. He has done extensive clinical work on urological issues in Ehlers-Danlos syndrome and tethered cord syndrome. For more information and educational materials, please visit our website: http://csfinfo.org/ Connect with us: Facebook: facebook.com/csfinfo Twitter: twitter.com/CSFinfo Pinterest: pinterest.com/csfinfo Instagram: instagram.com/uniteatnight Google+ Page: http://goo.gl/VTtwL Play Video Play Video "Measuring Outcome in Patients After Chiari Surgery" - John J. Oró, MD Help share more videos like this by donating to Bobby Jones CSF: http://ow.ly/RLvc50uoPdN It is well-known that not all Chiari patients do well after surgery. Unfortunately, there are many reasons for this-- none that we fully understand just yet. There are current research projects ongoing to help determine which patients will do better after Chiari surgery, but until then, we need to do a better job of seeing which patients have good surgical outcomes. Dr. John Oró describes the current available outcomes tools for Chiari surgery. Starting from the beginning, Dr. Oró explains how each of these tools were developed and what are their strengths and weaknesses. Most importantly? He explains why outcomes measures matter. These are not for doctors or medical professionals to tell themselves that they have done a great job. Outcomes measures are meant for patients' quality-of-life. Dr. Oró puts it quite eloquently: "Why do we focus on quality-of-life? Because that is the moral imperative." Outcomes research is meant to help patients improve their lives in a meaningful way. This presentation was made as part of the 2019 Research Colloquium. This meeting was meant to disseminate new research in Chiari, syringomyelia and related disorders and was hosted by the Bobby Jones CSF on October 19th in San Francisco, California. (2019) For more information and educational materials, visit our website: https://bobbyjonescsf.org Connect with Us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video "Patients with 'Benign' Chiari Require Decompression at a Low Rate" - E.B. Kuhn, MD Thank you, Cheribundi https://cheribundi.com , for sponsoring the 2018 CSF Research Colloquium! Help share more videos like this by donating to Bobby Jones CSF: http://ow.ly/RLvc50uoPdN Dr. E.B. Kuhn, a pediatric neurosurgeon at Children's of Alabama, talks a bit more about her team's new study involving young patients with Chiari malformation who did not undergo decompression surgery. The study found that a majority of the pediatric patients had symptoms that improved on their own and had overall good health outcomes, despite not having surgery. This, along with past studies, adds to the growing body of evidence that not all pediatric Chiari patients require surgery, at all. Families should have thoughtful conversations with their doctors and they should, if they can, obtain a second opinion before the decision to have surgery can be made. This lecture was given at the 2018 CSF Research Colloquium, held in Houston, Texas. (2018) For more information and educational materials, visit our website: https://csfinfo.org To learn more about Bobby Jones CSF, visit our new website: https://bobbyjonescsf.org See also: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video Parent-Reported Executive Dysfunction in Children & Teens with Chiari Type 1 - Maureen Lacy, PhD Help share more videos like this by donating to Bobby Jones CSF: https://bobbyjonescsf.org/donate-online/ Dr. Maureen Lacy describes her fascinating work studying the neuropsychology of pediatric Chiari patients. Many Chiari kids struggle to maintain what psychologists call "executive functioning", which work together to produce a person's short-term memory, attention/focus, and coordination. When executive functioning breaks down, it can be hard to think critically, which means some kids with this condition struggle in school. This lecture was given at the 2017 CSF Research Colloquium in Boston, MA. For more information, visit our website: https://bobbyjonescsf.org Connect with us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video CSF Colloquium: "Physical Therapy after Chiari Surgery with Co-Morbid Conditions" Help share more videos like this by supporting CSF: http://csfinfo.org/donate-online/ Dr. Michael Healy, certified DPT discusses the different methods he frequently uses on patients recovering from Chiari decompression, who may also suffer from co-morbid conditions, such as connective tissue disorders. From the 2014 CSF Research Colloquium. For more information, visit our website: http://csfinfo.org See also: Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Instagram: http://instagram.com/uniteatnight Google+ Page: http://google.com/+CsfinfoOrg Play Video Play Video Ask Dr. Petra Klinge on CSF flow in Chiari, Tethered Cord & Connective Tissue Disorders Help share more videos like this by donating to Bobby Jones CSF: https://bit.ly/bjcsfdonate In this Ask the Expert Virtual Q&A, Dr. Petra Klinge answers questions surrounding cerebrospinal fluid flow in Chiari, tethered cord and connective tissues disorders. Questions included: Is there a causative link between tethered cord, CSF leaks and intracranial hypertension? There are some theories that TC/OTC might cause cognitive issues (vertigo, brain fog, autonomic dysfunction)- have you found this in your practice and if so, what would the connection be? & many more! This presentation was given on Thursday, October 15, 2020 and was presented entirely online. (2020) Note from Bobby Jones CSF: We want to take a moment to sincerely thank all those who donated in support of this virtual presentation. Your generosity during such a difficult time for us all was both unexpected and extremely appreciated. From the bottom of the hearts of our boards, staff and volunteers, we want to thank you for your donations. Your kindness continues to motivate us and makes us all the more certain that this work is valuable and helping the people who need it. Thank you. For more information and educational materials, visit our website: https://bobbyjonescsf.org Connect with Us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video CSF presents "Physical Therapy in Patients with Craniocervical Instability & Chiari" Help share more info like this by donating now: http://csfinfo.org/donate-online/ Dr. Michael Healy discusses physical therapy in patients with instability who have undergone Chiari decompression surgery and provides some live demonstrations. For more information and educational materials, please visit our website: http://csfinfo.org/ See also Facebook: facebook.com/csfinfo Twitter: twitter.com/CSFinfo Google+ Page: http://goo.gl/VTtwL Play Video Play Video Improvement in Cognitive Performance after Surgery for Chiari I Malformation - Dr. Brian Dlouhy Help share more videos and continue meetings like this by donating to Bobby Jones CSF: https://bit.ly/bjcsfdonate Inspired by Dr. Jeremy Schmahmann's work on cognition and Chiari, Dr. Dlouhy presents the results from his team's latest study - "Improvement in Cognitive Performance after Surgery for Chiari I Malformation". Still unable to pinpoint exactly why cognitive performance is affected by Chiari I patients, meaning is it from the cerebellum, or pain or even depression, Dr. Dlouhy and his team explore this from a purely physical standpoint with the knowledge that the cerebellum contains pathways that go through the brainstem and play a critical role in cognition. And so, Dr. Dlouhy and team study the cognitive performance of patients with Chiari Malformation Type I and the effects of surgical decompression. This presentation was given at the 2020 Bobby Jones CSF Research Colloquium held on Friday, September 18, 2020 and was presented entirely online. (2020) For more information and educational materials, visit our website: https://bobbyjonescsf.org Connect with Us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video CSF Colloquium: "Venous Anomalies Common in Arnold Chiari Malfomation" Help share more videos like this by supporting CSF: http://csfinfo.org/donate-online/ Dr. Adnan Qureshi discusses the venous anomalies commonly associated with Chiari malformation (and EDS), their pathophysiology and whether or not they may be clinically significant. From the 2014 CSF Research Colloquium. For more information, visit our website: http://csfinfo.org See also: Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Instagram: http://instagram.com/uniteatnight Google+ Page: http://google.com/+CsfinfoOrg Play Video Play Video CSF Colloquium: "Chiari & Heritable Connective Tissue Disorders - Genetics" Help share more videos like this by supporting CSF: http://csfinfo.org/donate-online/ Dr. Allison Ashley-Koch talks more about the genetics of Chiari malformation and heritable connective tissue disorders such as Ehlers-Danlos Syndrome, Klippel Feil-Syndrome, Loeys-Dietz Syndrome, etc. For more information, visit our website: http://csfinfo.org See also: Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Instagram: http://instagram.com/uniteatnight Google+ Page: http://google.com/+CsfinfoOrg Chiari Chiari Cognition All Categories Play Video Play Video 2016 Think Tank: "Cognition in CSF Disorders" - Dr. Petra Klinge Help share more info like this by donating now: http://csfinfo.org/donate-online/ Dr. Petra Klinge discusses the potential mechanisms of cognitive dysfunction in patients with cerebrospinal fluid disorders, including Chiari malformation and syringomyelia. This presentation was given at the 2016 CSF Think Tank meeting. For more information and educational materials, please visit our website: http://csfinfo.org/ Connect with us: Facebook: facebook.com/csfinfo Twitter: twitter.com/CSFinfo Pinterest: pinterest.com/csfinfo Instagram: instagram.com/uniteatnight Google+ Page: http://goo.gl/VTtwL Play Video Play Video "Is Brain Fog Normal?: Walkthrough of a Neuropsychology Evaluation" - Travis Turner, PhD Help share more videos like this by donating to Bobby Jones CSF: https://bobbyjonescsf.org/donate-online/ "Brain fog" is a term used to describe a bunch of different cognitive issues like short-term memory problems, difficulty concentrating, word-finding issues, indecision, loss of interest/motivation, and much, much more. Dr. Travis Turner does a great job explaining how a neuropsychological evaluation can determine whether brain fog is "normal", or of clinical concern. This lecture was given at the November 16th CSF Chapter meeting at MUSC in Charleston, SC. For more information, visit our website: https://bobbyjonescsf.org Connect with us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Cognition Cognition Comorbidities All Categories Play Video Play Video "Diagnosis and Management of Chiari Related Dystonia" - Dr. Vanessa Hinson Help share more videos like this by donating to Bobby Jones CSF: https://bobbyjonescsf.org/donate-online/ Dystonia is a type of movement disorder in which patients have either intermittent or continuous moments where their muscles contract abnormally. Even though it is a muscular reaction, dystonia is mainly caused in the brain. Common features of dystonia are seizures-- many of which look very different depending on the type of dystonia and the individual patient. Dr. Vanessa Hinson, a neurologist at Medical University of South Carolina (MUSC) describes how a Chiari malformation and other conditions can cause dystonia. She also describes how to recognize a seizure and what patients and physicians can do together to address these issues together. This lecture was given at the February CSF Chapter meeting in Charleston, South Carolina. For more information, visit our website: https://bobbyjonescsf.org Connect with us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video Urology Issues in Chiari, EDS & Connective Tissue Disorders - Dr. Jonah Murdock Help share more info like this by donating now: http://csfinfo.org/donate-online/ Dr. Jonah Murdock, one of the most experienced neuro-urologists in the United States spoke at the CSF Chapter meeting in Lanham, Maryland on January 11th. Dr. Murdock spoke about urological issues in patients with connective tissue disorders and hypermobility. He has done extensive clinical work on urological issues in Ehlers-Danlos syndrome and tethered cord syndrome. For more information and educational materials, please visit our website: http://csfinfo.org/ Connect with us: Facebook: facebook.com/csfinfo Twitter: twitter.com/CSFinfo Pinterest: pinterest.com/csfinfo Instagram: instagram.com/uniteatnight Google+ Page: http://goo.gl/VTtwL Play Video Play Video CSF Colloquium: "The Sarah Syndrome" Help share more videos like this by supporting CSF: http://csfinfo.org/donate-online/ Dr. Harold Rekate talks about "the Sarah syndrome" at the 2014 CSF Research Colloquium in Boston, MA, which includes Chiari I malformation, dysautonomia, fibromyalgia, Ehlers-Danlos syndrome, and craniocervical instability. For more information, visit our website: http://csfinfo.org See also: Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Instagram: http://instagram.com/uniteatnight Google+ Page: http://google.com/+CsfinfoOrg Play Video Play Video Ask the Expert featuring Ilene Ruhoy, MD, The Pentad Patient Help share more videos like this by donating to Bobby Jones CSF: https://bit.ly/bjcsfdonate Dr. Ilene Ruhoy, one of few Chiari neurologists, joins us to discuss ‘The Pentad Patient’. The pentad diagnoses are POTS/dysautonomia, MCAS, GI dysfunction (MALS, SIBO, gastroparesis), Autoimmunity, and hypermobility type EDS, often seen in those with Chiari and cranial cervical instability and tethered cord. Dr. Ruhoy dives into definitions of each of these separate diagnoses and a bit about how they are diagnosed and treated, and even touches on the Septad patient. In the Q&A portion, Dr. Ruhoy expands on neurological symptoms for CCI as it pertains to an EDS patient, a more in-depth look at the immune-based treatments. Other questions included: What are the latest general recommendations for pentad hEDS patients in terms of pain and headache management medicines and strategies? How to find qualified EDS-knowledgeable neurosurgeons for children AND adults that take insurance? And how can mast cells or other inflammatory processes contribute to connective tissue breakdown/disorders in those who do not display classic systemic signs of EDS/hypermobility/connective tissue laxity? This lecture and Q&A was given completely virtually on October 28, 2021 under the Ask the Expert Series. (2021) Connect with Us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video CSF presents Craniocervical Abnormalities, Circulatory Dysfunction & Fatigue Help share more info like this by donating now: http://csfinfo.org/donate-online/ Dr. Peter Rowe lectures at the CSF Colloquium on October 19, 2013 in San Francisco, CA. See also Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Google+ Page: http://google.com/+CsfinfoOrg Play Video Play Video "Neurocardiology: Dysautonomia, Orthostatic Intolerance, POTS & More" - James Glenn MD Help share more videos like this by donating to Bobby Jones CSF: http://ow.ly/RLvc50uoPdN Dr. James Glenn, cardiologist at Medical University of South Carolina, discusses the disorders associated with both the organ systems involving neurology and cardiology-- sometimes referred to as "neurocardiology". These disorders are common in individuals with Ehlers-Danlos syndrome and other connective tissue disorders, which are co-morbid with Chiari malformation and syringomyelia. These disorders associated with neurocardiology can include: dysautonomia, other autonomic dysfunction, orthostatic intolerance, postural orthostatic tachycardia syndrome (or, POTS) and more. Common symptoms include syncope (fainting) and other issues related to the "involuntary" part of the brain. For more information and educational materials, visit our website: https://csfinfo.org To learn more about Bobby Jones CSF, visit our new website: https://bobbyjonescsf.org See also: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Comorbidities Comorbidities Comorbidities All Categories Play Video Play Video "Diagnosis and Management of Chiari Related Dystonia" - Dr. Vanessa Hinson Help share more videos like this by donating to Bobby Jones CSF: https://bobbyjonescsf.org/donate-online/ Dystonia is a type of movement disorder in which patients have either intermittent or continuous moments where their muscles contract abnormally. Even though it is a muscular reaction, dystonia is mainly caused in the brain. Common features of dystonia are seizures-- many of which look very different depending on the type of dystonia and the individual patient. Dr. Vanessa Hinson, a neurologist at Medical University of South Carolina (MUSC) describes how a Chiari malformation and other conditions can cause dystonia. She also describes how to recognize a seizure and what patients and physicians can do together to address these issues together. This lecture was given at the February CSF Chapter meeting in Charleston, South Carolina. For more information, visit our website: https://bobbyjonescsf.org Connect with us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video Urology Issues in Chiari, EDS & Connective Tissue Disorders - Dr. Jonah Murdock Help share more info like this by donating now: http://csfinfo.org/donate-online/ Dr. Jonah Murdock, one of the most experienced neuro-urologists in the United States spoke at the CSF Chapter meeting in Lanham, Maryland on January 11th. Dr. Murdock spoke about urological issues in patients with connective tissue disorders and hypermobility. He has done extensive clinical work on urological issues in Ehlers-Danlos syndrome and tethered cord syndrome. For more information and educational materials, please visit our website: http://csfinfo.org/ Connect with us: Facebook: facebook.com/csfinfo Twitter: twitter.com/CSFinfo Pinterest: pinterest.com/csfinfo Instagram: instagram.com/uniteatnight Google+ Page: http://goo.gl/VTtwL Play Video Play Video CSF Colloquium: "The Sarah Syndrome" Help share more videos like this by supporting CSF: http://csfinfo.org/donate-online/ Dr. Harold Rekate talks about "the Sarah syndrome" at the 2014 CSF Research Colloquium in Boston, MA, which includes Chiari I malformation, dysautonomia, fibromyalgia, Ehlers-Danlos syndrome, and craniocervical instability. For more information, visit our website: http://csfinfo.org See also: Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Instagram: http://instagram.com/uniteatnight Google+ Page: http://google.com/+CsfinfoOrg Play Video Play Video Ask the Expert featuring Ilene Ruhoy, MD, The Pentad Patient Help share more videos like this by donating to Bobby Jones CSF: https://bit.ly/bjcsfdonate Dr. Ilene Ruhoy, one of few Chiari neurologists, joins us to discuss ‘The Pentad Patient’. The pentad diagnoses are POTS/dysautonomia, MCAS, GI dysfunction (MALS, SIBO, gastroparesis), Autoimmunity, and hypermobility type EDS, often seen in those with Chiari and cranial cervical instability and tethered cord. Dr. Ruhoy dives into definitions of each of these separate diagnoses and a bit about how they are diagnosed and treated, and even touches on the Septad patient. In the Q&A portion, Dr. Ruhoy expands on neurological symptoms for CCI as it pertains to an EDS patient, a more in-depth look at the immune-based treatments. Other questions included: What are the latest general recommendations for pentad hEDS patients in terms of pain and headache management medicines and strategies? How to find qualified EDS-knowledgeable neurosurgeons for children AND adults that take insurance? And how can mast cells or other inflammatory processes contribute to connective tissue breakdown/disorders in those who do not display classic systemic signs of EDS/hypermobility/connective tissue laxity? This lecture and Q&A was given completely virtually on October 28, 2021 under the Ask the Expert Series. (2021) Connect with Us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video CSF presents Craniocervical Abnormalities, Circulatory Dysfunction & Fatigue Help share more info like this by donating now: http://csfinfo.org/donate-online/ Dr. Peter Rowe lectures at the CSF Colloquium on October 19, 2013 in San Francisco, CA. See also Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Google+ Page: http://google.com/+CsfinfoOrg Play Video Play Video "Neurocardiology: Dysautonomia, Orthostatic Intolerance, POTS & More" - James Glenn MD Help share more videos like this by donating to Bobby Jones CSF: http://ow.ly/RLvc50uoPdN Dr. James Glenn, cardiologist at Medical University of South Carolina, discusses the disorders associated with both the organ systems involving neurology and cardiology-- sometimes referred to as "neurocardiology". These disorders are common in individuals with Ehlers-Danlos syndrome and other connective tissue disorders, which are co-morbid with Chiari malformation and syringomyelia. These disorders associated with neurocardiology can include: dysautonomia, other autonomic dysfunction, orthostatic intolerance, postural orthostatic tachycardia syndrome (or, POTS) and more. Common symptoms include syncope (fainting) and other issues related to the "involuntary" part of the brain. For more information and educational materials, visit our website: https://csfinfo.org To learn more about Bobby Jones CSF, visit our new website: https://bobbyjonescsf.org See also: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf CSF leaks CSF leaks EDS All Categories Play Video Play Video 2019 NCSummit: Physical Therapy in Ehlers-Danlos Syndrome - Patricia Meegan, DPT Help share more videos like this: http://ow.ly/RLvc50uoPdN Dr. Patricia Meegan delivers an outstanding presentation on what to expect from physical therapy. Patients with Chiari malformation, Ehlers-Danlos syndrome (EDS) and other neurological and connective tissue disorders often have to advocate on their own behalf for PT. Discussing your care plan with your physical therapist, neurosurgeon, or other professionals on your care team is critical to ensuring a successful treatment. Is something not working for you? Talk to your therapist! It is not uncommon to need to re-evaluate therapy goals with your PT. Watch Dr. Meegan describe how you can identify these moments, how to choose the best PT for your care. She even describes tips and tricks in getting insurance to continue covering your PT. This presentation was given at the 2019 Neuro Connect Summit in Rockville, Maryland. Thank you to the 2019 Neuro Connect Alliance partners for making this education and advocacy weekend a reality: Bobby Jones Chiari & Syringomyelia Foundation, Dysautonomia Support Network and the Ehlers-Danlos Society! Learn more about the 2019 Neuro Connect Summit and Neuro Connect Alliance at: https://neuroconnectsummit.org For further information and educational materials, visit Bobby Jones CSF's website: Old website: https://csfinfo.org New website (not finished): https://bobbyjonescsf.org Get Social: NCS Facebook: http://facebook.com/NCSummit NCS Twitter: http://twitter.com/ncsummit19 NCS Instagram: http://instagram/ncsummit Bobby Jones CSF Facebook: http://facebook.com/bobbyjonescsf Bobby Jones CSF Twitter: http://twitter.com/bobbyjonescsf Bobby Jones CSF Instagram: http://instagram/bobbyjonescsf Play Video Play Video Urology Issues in Chiari, EDS & Connective Tissue Disorders - Dr. Jonah Murdock Help share more info like this by donating now: http://csfinfo.org/donate-online/ Dr. Jonah Murdock, one of the most experienced neuro-urologists in the United States spoke at the CSF Chapter meeting in Lanham, Maryland on January 11th. Dr. Murdock spoke about urological issues in patients with connective tissue disorders and hypermobility. He has done extensive clinical work on urological issues in Ehlers-Danlos syndrome and tethered cord syndrome. For more information and educational materials, please visit our website: http://csfinfo.org/ Connect with us: Facebook: facebook.com/csfinfo Twitter: twitter.com/CSFinfo Pinterest: pinterest.com/csfinfo Instagram: instagram.com/uniteatnight Google+ Page: http://goo.gl/VTtwL Play Video Play Video Ask the Expert featuring Ilene Ruhoy, MD, The Pentad Patient Help share more videos like this by donating to Bobby Jones CSF: https://bit.ly/bjcsfdonate Dr. Ilene Ruhoy, one of few Chiari neurologists, joins us to discuss ‘The Pentad Patient’. The pentad diagnoses are POTS/dysautonomia, MCAS, GI dysfunction (MALS, SIBO, gastroparesis), Autoimmunity, and hypermobility type EDS, often seen in those with Chiari and cranial cervical instability and tethered cord. Dr. Ruhoy dives into definitions of each of these separate diagnoses and a bit about how they are diagnosed and treated, and even touches on the Septad patient. In the Q&A portion, Dr. Ruhoy expands on neurological symptoms for CCI as it pertains to an EDS patient, a more in-depth look at the immune-based treatments. Other questions included: What are the latest general recommendations for pentad hEDS patients in terms of pain and headache management medicines and strategies? How to find qualified EDS-knowledgeable neurosurgeons for children AND adults that take insurance? And how can mast cells or other inflammatory processes contribute to connective tissue breakdown/disorders in those who do not display classic systemic signs of EDS/hypermobility/connective tissue laxity? This lecture and Q&A was given completely virtually on October 28, 2021 under the Ask the Expert Series. (2021) Connect with Us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video CSF presents The Hypermobile Spine Help share more info like this by donating now: http://csfinfo.org/donate-online/ Dr. Brad Tinkle lectures at the CSF Colloquium on October 19, 2013 in San Francisco, CA. See also Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Google+ Page: http://google.com/+CsfinfoOrg EDS EDS Intracranial hypertension All Categories Play Video Play Video Venous Sinus Stenting for Pediatric IIH, CSF Leak, Jugular Vein Stenosis IIH Support Group June 2021 Facilitated by Dr. Athos Patsalides & Gabrielle Mauro, LMSW Northwell Health: North Shore University Hospital Department of Neurosurgery Play Video Play Video Venous Stenting For IIH And Pulsatile Tinnitus - Vitor Pereira, M.D. The Seattle Science Foundation is a not for profit organization dedicated to advancing the quality of patient care through education, research, innovation and technology. As a physician driven organization, we have created a trusted community of nationally recognized experts from the world’s best medical and academic institutions. SSFTV is the official YouTube channel of the Seattle Science Foundation. Subscribe now to be updated on the latest videos: tinyurl.com/yt8kt8mg. To join our upcoming meeting for CME credit, visit https://www.ssfcme.org. Get Social With SSF: On Instagram: https://www.instagram.com/seattlesciencefoundation On Facebook: https://www.facebook.com/SeattleScienceFoundation On Twitter: https://twitter.com/seattlescifdtn On LinkedIn: https://www.linkedin.com/company/756824 On YouTube: http://www.ssfyoutube.org Learn More at http://www.seattlesciencefoundation.org All archived recorded lectures are available for informational purposes only and are only eligible for self-claimed Category II credit. They are not intended to serve as, or be the basis of a medical opinion, diagnosis, prognosis or treatment for any particular patient. The information was current at the time of the presentation. Play Video Play Video Venous Sinus Stenosis IIH support group; April 6 Facilitated by Dr. Athos Patsalides & Gabrielle Mauro, LMSW Northwell Health: North Shore University Hospital Department of Neurosurgery Play Video Play Video Venous Sinus Stenting IIH Support Group May 2021 Facilitated by Dr. Athos Patsalides & Gabrielle Mauro, LMSW Northwell Health: North Shore University Hospital Department of Neurosurgery Play Video Play Video “Intracranial Venous Stenting for Idiopathic Intracranial Hypertension” - Kenneth C. Liu, MD Help share more videos like this by donating to Bobby Jones CSF: http://ow.ly/RLvc50uoPdN Following brief introductions by Dorothy Poppe and Dr. Fraser C. Henderson at the Chiari & Syringomyelia Foundation, Dr. Kenneth Liu, neurovascular surgeon at Penn State, describes his unique approach to treating idiopathic intracranial hypertension (IIH). Also called pseudotumor cerebri, Dr. Liu treats IIH using a method called intracranial venous stenting. Having shown some real success in some of his cases, Dr. Liu describes how and why stenting might work and for which patients. For more information and educational materials, visit our website: https://csfinfo.org To learn more about Bobby Jones CSF, visit our new website: https://bobbyjonescsf.org See also: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video CSF presents "Idiopathic Intracranial Hypertension (IIH): Advances in Treatment" - Dr. Imran Chaudry Help share more info like this by donating now: http://csfinfo.org/donate-online/ Dr. Imran Chaudry talks about the different methods that doctors currently have to treat idiopathic intracranial hypertension (IIH), how those treatments have advanced and how far they still have to go. For patients who are beginning to lose the ability to see, advancing treatments for this condition is critical to quality of life. This condition is most commonly found in women with BMIs at 25 and up (obesity), but it can affect people with normal to low BMIs, as well. This lecture was given at the May 5, 2017 Charleston, SC CSF Chapter meeting. For more information and educational materials, please visit our website: http://csfinfo.org/ Connect with us: Facebook: facebook.com/csfinfo Twitter: twitter.com/CSFinfo Pinterest: pinterest.com/csfinfo Instagram: instagram.com/uniteatnight Google+ Page: http://goo.gl/VTtwL Play Video Play Video CSF presents "Neurological and Spinal Disorders in EDS" - Dr. Sunil Patel Help share more info like this by donating now: http://csfinfo.org/donate-online/ Dr. Sunil Patel discusses the various neurological and spinal disorders that are commonly associated with Ehlers-Danlos syndrome, which is a disorder caused by a defect in the individual's connective tissue. This connective tissue disorder seems to run in families and there are different types of EDS, the most common of which is hypermobile type. For more information and educational materials, please visit our website: http://csfinfo.org/ See also Facebook: facebook.com/csfinfo Twitter: twitter.com/CSFinfo Pinterest: pinterest.com/csfinfo Instagram: instagram.com/uniteatnight Google+ Page: http://goo.gl/VTtwL Play Video Play Video CSF Colloquium: "Pseudotumor Cerebri & Other Syndromes of Intracranial Hypertension" Help share more videos like this by supporting CSF: http://csfinfo.org/donate-online/ Dr. Daniele Rigamonti discusses other comorbid conditions commonly found in Chiari patients at the 2014 CSF Resaerch Colloquium. For more information, visit our website: http://csfinfo.org See also: Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Instagram: http://instagram.com/uniteatnight Google+ Page: http://google.com/+CsfinfoOrg Play Video Play Video Craniocervical Instability in Hypermobile EDS - Jane R. Schubart, PhD & Fraser C. Henderson, Sr., MD Help share more videos like this by donating to Bobby Jones CSF: https://bit.ly/bjcsfdonate Craniocervical instability can be particularly disabling for some individuals. Surgical fusion of the unstable vertebrae has been suggested as a treatment for the symptoms that are often seen in these patients. Dr. Henderson and Dr. Schubart describe a retrospective outcomes study of patients who underwent craniocervical fusion who had a diagnosis of hypermobile Ehlers-Danlos syndrome or some clinical hypermobility with radiological evidence, severe head/neck pain, symptoms of cervical medullary syndrome, neurological deficits, and for whom all non-operative treatment had previously failed. The results were promising that there may be benefit to fusion surgery in this smaller patient population. This presentation was given at the 2021 Think Tank meeting, which was held virtually on Saturday, August 25th. (2021) Connect with Us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Intracranial hypertension IIH Physical therapy All Categories Play Video Play Video 2019 NCSummit: Physical Therapy in Ehlers-Danlos Syndrome - Patricia Meegan, DPT Help share more videos like this: http://ow.ly/RLvc50uoPdN Dr. Patricia Meegan delivers an outstanding presentation on what to expect from physical therapy. Patients with Chiari malformation, Ehlers-Danlos syndrome (EDS) and other neurological and connective tissue disorders often have to advocate on their own behalf for PT. Discussing your care plan with your physical therapist, neurosurgeon, or other professionals on your care team is critical to ensuring a successful treatment. Is something not working for you? Talk to your therapist! It is not uncommon to need to re-evaluate therapy goals with your PT. Watch Dr. Meegan describe how you can identify these moments, how to choose the best PT for your care. She even describes tips and tricks in getting insurance to continue covering your PT. This presentation was given at the 2019 Neuro Connect Summit in Rockville, Maryland. Thank you to the 2019 Neuro Connect Alliance partners for making this education and advocacy weekend a reality: Bobby Jones Chiari & Syringomyelia Foundation, Dysautonomia Support Network and the Ehlers-Danlos Society! Learn more about the 2019 Neuro Connect Summit and Neuro Connect Alliance at: https://neuroconnectsummit.org For further information and educational materials, visit Bobby Jones CSF's website: Old website: https://csfinfo.org New website (not finished): https://bobbyjonescsf.org Get Social: NCS Facebook: http://facebook.com/NCSummit NCS Twitter: http://twitter.com/ncsummit19 NCS Instagram: http://instagram/ncsummit Bobby Jones CSF Facebook: http://facebook.com/bobbyjonescsf Bobby Jones CSF Twitter: http://twitter.com/bobbyjonescsf Bobby Jones CSF Instagram: http://instagram/bobbyjonescsf Play Video Play Video CSF presents "Physical Therapy in Joint Hypermobility Syndrome" - Susan Chalela, PT Help share more info like this by donating now: http://csfinfo.org/donate-online/ Susan Chalela, PT has a unique perspective as a practicing physical therapist who also has joint hypermobility syndrome. In this lecture from the February 9th CSF educational meeting in Charleston, SC, she explains the specific considerations that need to be made when going through physical therapy. For instance, individuals with hypermobile joints should be started at low- to mid-ranges of motion to avoid over-extending and injuring their already overly flexible joints. For more information and educational materials, please visit our website: http://csfinfo.org/ Connect with us: Facebook: facebook.com/csfinfo Twitter: twitter.com/CSFinfo Pinterest: pinterest.com/csfinfo Instagram: instagram.com/uniteatnight Google+ Page: http://goo.gl/VTtwL Play Video Play Video Ask the Expert with Patricia E Meegan, DPT - PT for Patients with EDS, Chiari & Related Conditions Help share more videos like this by donating to Bobby Jones CSF: https://bit.ly/bjcsfdonate Dr. Patricia Meegan hosted a Q&A session about physical therapy for patients with Ehlers Danlos, Chiari malformation, and other related conditions. The presentation focused on manual therapy for the head and the proper alignment of the head and neck. She discusses what physical therapists treat, the difference between structural and functional physical therapy, the biomechanics of the craniocervical junction, and how to choose a physical therapist. Questions were asked about how physical therapy treatment is different for Chiari patients with cranial cervical instability, different experimental treatments, cervical traction, long-term physical therapy programs, and more. This presentation was given on Thursday, May 13 and was presented entirely online. (2021) Connect with Us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video CSF presents "Physical Therapy in Patients with Craniocervical Instability & Chiari" Help share more info like this by donating now: http://csfinfo.org/donate-online/ Dr. Michael Healy discusses physical therapy in patients with instability who have undergone Chiari decompression surgery and provides some live demonstrations. For more information and educational materials, please visit our website: http://csfinfo.org/ See also Facebook: facebook.com/csfinfo Twitter: twitter.com/CSFinfo Google+ Page: http://goo.gl/VTtwL Play Video Play Video CSF Colloquium: "Physical Therapy after Chiari Surgery with Co-Morbid Conditions" Help share more videos like this by supporting CSF: http://csfinfo.org/donate-online/ Dr. Michael Healy, certified DPT discusses the different methods he frequently uses on patients recovering from Chiari decompression, who may also suffer from co-morbid conditions, such as connective tissue disorders. From the 2014 CSF Research Colloquium. For more information, visit our website: http://csfinfo.org See also: Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Instagram: http://instagram.com/uniteatnight Google+ Page: http://google.com/+CsfinfoOrg Play Video Play Video 2019 NCSummit: Occupational Therapy to Address Fatigue in Chronic Illness - Joanna Behm, MS, OTR-L Help share more videos like this: http://ow.ly/RLvc50uoPdN As both a clinician and a patient herself, Joanna Behm, gives a fantastic presentation on how occupational therapy can help individuals living with chronic illness. Fatigue is a huge part of chronic illness. It's extremely important for individuals living with any chronic illness-- whether it be Ehlers-Danlos syndrome, dysautonomia, Chiari malformation, syringomyelia, or others-- to pace themselves. Ms. Behm and her students give a great overview in this presentation. Watch to learn how basic occupational therapy (OT) tweaks can make day-to-day activities more enjoyable and manageable. This presentation was given at the 2019 Neuro Connect Summit in Rockville, Maryland. Thank you to the 2019 Neuro Connect Alliance partners for making this education and advocacy weekend a reality: Bobby Jones Chiari & Syringomyelia Foundation, Dysautonomia Support Network and the Ehlers-Danlos Society! Learn more about the 2019 Neuro Connect Summit and Neuro Connect Alliance at: https://neuroconnectsummit.org For further information and educational materials, visit Bobby Jones CSF's website: Old website: https://csfinfo.org New website (not finished): https://bobbyjonescsf.org Get Social: NCS Facebook: http://facebook.com/NCSummit NCS Twitter: http://twitter.com/ncsummit19 NCS Instagram: http://instagram/ncsummit Bobby Jones CSF Facebook: http://facebook.com/bobbyjonescsf Bobby Jones CSF Twitter: http://twitter.com/bobbyjonescsf Bobby Jones CSF Instagram: http://instagram/bobbyjonescsf Physical therapy Physical therapy Spinal fusion All Categories Play Video Play Video “Craniocervical Fusion for Craniovertebral Instability” - Justin N. Virojanapa, DO Thank you, Cheribundi https://cheribundi.com , for sponsoring the 2018 CSF Research Colloquium! Help share more videos like this by donating to Bobby Jones CSF: http://ow.ly/RLvc50uoPdN Dr. Justin Virojanapa talks about his work with patients suffering from a so-called "Sara Syndrome", which is a form of cervical medullary syndrome with craniocervical instability. Dr. Virojanapa discusses the experience at his institution using craniocervical fusion surgery to manage various neurological and autonomic symptoms in patients with this type of instability and condition. This lecture was given at the 2018 CSF Research Colloquium, held in Houston, Texas. (2018) For more information, visit our website: https://csfinfo.org To learn more about Bobby Jones CSF, visit our new website: https://bobbyjonescsf.org See also: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video CSF Colloquium: "Various Forms of Craniocervical Stabilization" Help share more videos like this by supporting CSF: http://csfinfo.org/donate-online/ Dr. Paolo Bolognese discusses he various ways in which neurosurgeons correct for instability in Chiari patients, during surgery. For more information, visit our website: http://csfinfo.org See also: Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Instagram: http://instagram.com/uniteatnight Google+ Page: http://google.com/+CsfinfoOrg Spinal fusion Spinal fusion Tethered cord All Categories Play Video Play Video Ask Dr. Petra Klinge on CSF flow in Chiari, Tethered Cord & Connective Tissue Disorders Help share more videos like this by donating to Bobby Jones CSF: https://bit.ly/bjcsfdonate In this Ask the Expert Virtual Q&A, Dr. Petra Klinge answers questions surrounding cerebrospinal fluid flow in Chiari, tethered cord and connective tissues disorders. Questions included: Is there a causative link between tethered cord, CSF leaks and intracranial hypertension? There are some theories that TC/OTC might cause cognitive issues (vertigo, brain fog, autonomic dysfunction)- have you found this in your practice and if so, what would the connection be? & many more! This presentation was given on Thursday, October 15, 2020 and was presented entirely online. (2020) Note from Bobby Jones CSF: We want to take a moment to sincerely thank all those who donated in support of this virtual presentation. Your generosity during such a difficult time for us all was both unexpected and extremely appreciated. From the bottom of the hearts of our boards, staff and volunteers, we want to thank you for your donations. Your kindness continues to motivate us and makes us all the more certain that this work is valuable and helping the people who need it. Thank you. For more information and educational materials, visit our website: https://bobbyjonescsf.org Connect with Us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video "The Occult Tethered Cord Syndrome" - Petra M Klinge, MD, PhD Help share more videos like this by donating to Bobby Jones CSF: https://bit.ly/bjcsfdonate Dr. Petra Klinge describes what has become known as "occult" tethered cord syndrome, which is a type of tethered cord syndrome that seems to have no known cause. It is not well understood how or why this condition appears in a small subset of patients, but Dr. Klinge describes what is known right now and what we still need to learn. This lecture was given at the 2018 CSF Disorders Symposium at Brown University in Providence, Rhode Island. For more information and educational materials, visit our website: https://bobbyjonescsf.org Connect with Us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video Update on Tethered Cord Common Data Elements from Tethered Cord Syndrome CDE Work Group Help share more videos and continue meetings like this by donating to Bobby Jones CSF: https://bit.ly/bjcsfdonate Common Data Element (CDE) are standardized key terms or concepts, established so that they may be used in clinical research or in studies, to enhance data quality and so that the data can be used across sites and over time. Here, Dr. Fraser Henderson and team of experts present on the Common Data Elements for Tethered Cord Syndrome (TCS) they have created with the purpose of receiving input from the other attendees at the 2020 Bobby Jones CSF Research Colloquium. The team found this project to be of great importance due to the controversy surrounding TCS. Team members include: U. Batzdorf, K. Esposito, H. Gilmer, D. Gordon, J. Heiss, F. Henderson, P. Klinge, M. Koby, D. Long, M. Narayanan, D. Poppe, R. Singh. This presentation was given at the 2020 Bobby Jones CSF Research Colloquium held on Friday, September 18, 2020 and was presented entirely online. (2020) For more information and educational materials, visit our website: https://bobbyjonescsf.org Connect with Us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video "Imaging of Patient with Occult Tethered Cord Syndrome" - Amanda Baker, MD Help share more videos like this by donating to Bobby Jones CSF: https://bobbyjonescsf.org/donate-online/ Dr. Amanda Baker describes the process of taking diagnostic images for patients with occult tethered cord syndrome, and explains why neuroradiologists may have trouble, since imaging may be fairly tricky. This lecture was given at the 2018 CSF Disorders Symposium at Brown University in Providence, Rhode Island. For more information, visit our website: https://bobbyjonescsf.org Connect with us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video "Importance of Urodynamic Findings in Occult Tethered Cord Syndrome" - Janice A. Santos Cortes, MD Help share more videos like this by donating to Bobby Jones CSF: https://bobbyjonescsf.org/donate-online/ Dr. Santos-Cortes describes why it is so important to obtain an accurate urodynamic study for the appropriate diagnosis of occult tethered cord syndrome, and how urologists can help patients and their doctors come to the correct conclusions. This lecture was given at the 2018 CSF Disorders Symposium at Brown University in Providence, Rhode Island. For more information, visit our website: https://bobbyjonescsf.org Connect with us: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video "Tethered Cord Syndrome and Ehlers Danlos Syndrome" - Sunil Patel, MD Help share more videos like this by donating to Bobby Jones CSF: http://ow.ly/RLvc50uoPdN Dr. Sunil Patel talks about the emerging field of study that associates tethered cord syndrome and Ehlers-Danlos syndrome. Dr. Patel describes the types of symptoms that patients who share both these conditions may present with in doctor's offices. He describes the current controversies surrounding the co-morbidities and how patients and doctors can work together to improve diagnosis and treatment options. For more information and educational materials, visit our website: https://csfinfo.org To learn more about Bobby Jones CSF, visit our new website: https://bobbyjonescsf.org See also: Facebook: http://facebook.com/bobbyjonescsf Twitter: http://twitter.com/bobbyjonescsf Instagram: http://instagram/bobbyjonescsf Play Video Play Video CSF Colloquium: "Tethered Cord Syndrome in the Chiari Patient" Help share more videos like this by supporting CSF: http://csfinfo.org/donate-online/ Dr. Petra Klinge reviews the neurosurgical literature regarding tethered cord syndrome and its diagnosis, clinical presentation and treatment options. From the 2014 CSF Research Colloquium. For more information, visit our website: http://csfinfo.org See also: Facebook: http://facebook.com/csfinfo Twitter: http://twitter.com/CSFinfo Instagram: http://instagram.com/uniteatnight Google+ Page: http://google.com/+CsfinfoOrg Play Video Play Video Dr. Petra Klinge presents “Tethered Cord Syndrome in Ehlers-Danlos”. Petra Klinge, MD is an internationally renowned general neurosurgeon specializing in the surgical treatment of patients with brain tumors, hydrocephalus and Alzheimer’s disease, pediatric diseases and treatment of congenital diseases like Chiari and spinal malformations. Learn More at http://www.chronicpainpartners.com/free-webinar-tethered-cord-syndrome-in-ehlers-danlos-december-15-2015/ Play Video Play Video Difference among Tethered Cord Syndrome, Occult Tethered Cord Syndrome and the Filum Disease. https://institutchiaribcn.com/en/ #TetheredCord #Spinabifida #FilumDisease #Spinabifidaocculta #OccultTetheredCord Music credit: https://www.bensound.com/ Tethered cord Tethered cord

CRANIOCERVICAL INSTABILITY ATLANTO-AXIAL INSTABILITY Craniocervical instability (CCI) and A tlantoaxial instability (AAI) are conditions where the ligaments that stabilize the junction between the skull and the cervical spine (the neck) are too loose or weak. This instability can lead to excessive movement at the craniocervical junction, causing compression or irritation of the brainstem, spinal cord, and surrounding nerves. CCI affects the skull and first(C1) vertebrae whereas AAI affects the first(C1) and second(C2) vertebrae SYMPTOM S - Neck Pain : Chronic pain, often at base of skull that may radiate to the shoulders and upper back. Often described as the head feeling too heavy, "bubblehead" - Headaches : Often at the back of the head, worsening with neck movement. - Neurological Symptoms : Dizziness, vertigo, difficulty swallowing, seizures, spasticity, clumsiness, numbness or tingling in the arms and legs, paralysis, and coordination problems. - Sleep issues : General feeling of being tired or weak(fatigue), sleep apnea - Cognitive issue : Trouble with memory, thinking, speaking. - Visual and Auditory Disturbances : Blurred vision, tinnitus (ringing in the ears), or hearing loss. - Autonomic Dysfunction : Symptoms like rapid heart rate, changes in blood pressure, and digestive issues due to the impact on the autonomic nervous system. MAKY.OREL, CC0 by 1.0 CAUSES - Congenital Conditions : Conditions such as Downs syndrome and osteogenesis imperfecta which affects bones, disorders like Ehlers-Danlos syndrome, which affect connective tissue, can lead to CCI+AAI. - Trauma : Injuries such as whiplash or head trauma can damage the ligaments and structures in the craniocervical region. - Degenerative d iseases : Conditions like rheumatoid arthritis can weaken the joints and ligaments over time. - Post-Surgical : Some patients develop CCI+AAI after surgeries involving the head, neck, or spine. Especially chiari decompression surgery THE CRANIOCERVICAL LIGAMENTS In Craniocervical Instability (CCI) and Atlantoaxial Instability (AAI), the key problem is that the ligaments connecting the skull (cranium) to the upper cervical spine — especially C1 (atlas) and C2 (axis) — are too loose, stretched, or damaged. This allows excessive movement that can compress the brainstem, spinal cord, or nerves. Whereas the classical instability most doctors are taught about is due to bone abnormalities or full dislocations, this website refers CCI and AAI ine the context of ligament laxity. Anatomy Standard - Drawing Cranio-cervical junction ligaments - Latin labels" at AnatomyTOOL.org by Jānis Šavlovskis and Kristaps Raits, license: Creative Commons Attribution-NonCommercial THE BIOMECHANICAL CASCADE Ligament laxity or damage (often due to trauma or connective tissue disorder) → Excessive motion at occipito-atlantal (CCI) or atlantoaxial (AAI) joints → Compression or stretching of: Brainstem Upper spinal cord Cranial nerves IX–XII Vertebral arteries or jugular veins → Neurological and vascular dysfunction → Chronic pain and autonomic dysregulation (dysautonomia) DIAGNOSIS - Clinical Examination : Detailed neurological and physical examination to assess symptoms and range of motion. - Imaging Studies : Upright MRI, rotational CT scan to visualize the craniocervical junction and detect abnormal movement. Digital motion X-ray, a specialized X-rays taken while the patient moves their head up and down, may also be used to see how the cervical spine aligns. - Measurements : made on imaging to asses the degree of abnormal movement (instability) of the spine. TREATMENT Conservative Management: - Physical Therapy : Strengthening neck muscles to provide better support and compensate for the ligament laxity. - Bracing : Using cervical collars to limit movement and provide stability. - Medications : Pain relief and some drugs can help to manage symptoms. Surgical Intervention: - Spinal Fusion Surgery: In severe cases, fusing the skull to the upper cervical vertebrae to stabilize the junction. This involves using screws, rods, or plates to secure the bones in place. Alternative therapies: - Prolotherapy : Injects a natural irritant (like dextrose) into ligaments to stimulate healing and can tighten lax ligaments over time - Platelet-Rich Plasma (PRP) : Uses your own blood platelets, injected into injured ligaments to promote repair. Often targeted at alar, transverse, or accessory ligaments - Stem Cell Therapy: Similar goal to PRP but with stem cells (from fat or bone marrow). More expensive and experimental, but some report improvement in instability symptoms - Percutaneous Implantation of the Craniocervical Ligament (PICL): a minimally invasive, image-guided regenerative procedure designed to strengthen and stabilize the ligaments at the top of the spine Please keep in mind that these alternative treatments are still new, understudied and considered experimental POTENTIAL COMPLICATIONS - Neurological Damage : If untreated, the ongoing compression can cause permanent damage to the brainstem and surrounding nerves. Fusion surgery While spinal fusion surgery can be beneficial and necessary, it carries several risks: - Infection : The surgery site can become infected. - Bleeding : There may be significant blood loss during the operation. - Pain : Persistent pain at the fusion site is possible. - Nerve Damage : Nerves near the spine might get damaged, leading to numbness, weakness, or paralysis. - Adjacent Segment Disease : Stress on the surrounding vertebrae can cause them to deteriorate faster. PROGNOSIS The outlook for individuals with CCI varies depending on the severity of the instability and the effectiveness of treatment. Early diagnosis and appropriate management can significantly improve symptoms and quality of life. In severe cases, surgical intervention may be necessary to prevent further neurological damage and provide long-term stability. Regular follow-up with a healthcare provider is essential to monitor the condition and adjust treatment as needed. SOURCES Craniocervical instability in patients with Ehlers-Danlos syndromes: outcomes analysis following occipito-cervical fusion Craniocervical Instability - Dr. Gilete Craniocervical instability and hEDS:HSD Cervical medullary syndrome secondary to craniocervical instability and ventral brainstem compression in hereditary hypermobility connective tissue disorders CONSENSUS STATEMENT 1. Ventral brainstem compression, medullary kinking and deformation of the upper spinal cord and/or brai Atlantoaxial Instability - StatPearls - NCBI Bookshelf Biomechanics of the craniocervical region: the alar and transverse ligaments

SPECIALISTS Below is a list of specialists known to be knowledgeable of cranio cervical instability and related conditions. We do not endorse or recommend anyone. CCI & AAI SPECIALISTS THE US Dr. Fraser Henderson Location: Silver springs, MD Speciality: Neurosurgery Website: https://www.metropolitanneurosurgery.org/dr-fraser-henderson/ Contact info: Phone: (301) 557-9049 or via website Does online evaluations/consults: No Also treats/is knowledgeable on: Chiari malformation, occult tethered cord Other info: Dr. Robert Rosenbaum Location: Silver springs, MD Speciality: Neurosurgery Website: https://www.metropolitanneurosurgery.org/dr-robert-rosenbaum/ Contact info: Phone: (301) 557-9049 or via website Does online evaluations/consults: No Also treats/is knowledgeable on: Other info : Dr. Paolo Bolognese Location: New york Speciality: Neurosurgery Website: http://www.chiarinsc.com/dr.bolognese.php Contact info: Phone (516) 321-2586 and pbolognese@chiarinsc.com Does online evaluations/consults: Yes Also treats/is knowledgeable on: Chiari malformation Other info: Dr. Ibrahim Hussain Location: New york Speciality:Neurosurgery Website: https://neurosurgery.weillcornell.org/faculty/ibrahim-hussain-md Contact info: (888) 922-2257 Does online evaluations/consults: Also treats/is knowledgeable on: CSF leak Other info: Works with Dr. Greenfield Dr . Sunil Patel Location: Charleston, SC Speciality: Neurosurgery Website: https://muschealth.org/MUSCApps/providerdirectory/Patel-Sunil Contact info: Does online evaluations/consults: No Also treats/is knowledgeable on: Other info: Dr . Faheem Sandhu Location: Washington, DC Speciality: Neurosurgery Website: https://www.medstarhealth.org/doctor/dr-faheem-akram-sandhu-md/ Contact info: Does online evaluations/consults: No Also treats/is knowledgeable on: Other info: Dr. Anthony Capocelli Jr Location : Little Rock, AR Speciality: Neurosurgery Website: https://www.orthoarkansas.com/anthony-capocelli-md Contact info: Phone 501-500-3500 or via website Does online evaluations/consults: Also treats/is knowledgeable on: Other info: Dr. Arthur Jenkins Location: New York, NY Speciality: Neurosurgery Website: https://jenkinsneurospine.com/ Contact info: Phone (646) 499-0488 or via website Does online evaluations/consults: Also treats/is knowledgeable on: Other info: Dr. Charles Sansur Location: Maryland Speciality: Neurosurgery Website: https://www.umms.org/find-a-doctor/profiles/dr-charles-a-sansur-md--mhsc-1568679652 Contact info: via website Does online evaluations/consults: Also treats/is knowledgeable on: Other info: Dr. Neill Wright Location: St. Louis, Missouri Speciality: Neurosurgery Website: https://www.neillwrightmd.com/ Contact info: (314) 806-1770 or wright@nwrightmd.com Does online evaluations/consults: Also treats/is knowledgeable on: Other info: Dr. Justin Virojanapa Location: Cincinnati, Ohio Speciality: Neurosurgery Website: https://www.uchealth.com/en/provider-profiles/virojanapa-justin-1598063612 Contact info: (513) 475-8000 Does online evaluations/consults: Also treats/is knowledgeable on: Other info: Dr. Deb A. Bhowmick Location: North carolina Speciality: Neurosurgery Website: https://www.dukehealth.org/find-doctors-physicians/deb-bhowmick-md Contact info: (919) 620-5168 Does online evaluations/consults: Also treats/is knowledgeable on: Other info: Dr. Colin C. Buchanan Location: Colorado Speciality: Neurosurgery Website: https://www.cbsi.md/buchanan Contact info: See website Does online evaluations/consults: Also treats/is knowledgeable on: Chiari Other info: AUSTRALIA Dr. Prashanth Rao Location: Sydney, Australia Speciality: Neurosurgery Website: https://brainandspinesurgery.com.au/ Contact info: Phone: 02 90527567 or info@brainandspinesurgery.com.au Does online evaluations/consults: Unknown Also treats/is knowledgeable on: Other info: EUROPE Dr. Vinc en Ç Gilete Location: Barcelona, Spain Speciality: Neurosurgery Website: https://drgilete.com/ Contact info: +34 93 220 28 09 or info@drgilete.com Does online evaluations/consults : Yes Also treats/is knowledgeable on: Chiari malformation, venous stenosis, (occult) tethered cord, Other info: Dr. Bartolomé Oliver Location: Barcelona, Spain Speciality: Neurosurgery Website: https://chiarisurgery.com/ Contact info: info@chiarisurgery.com or +34 698 991 982 Does online evaluations/consults : Yes Also treats/is knowledgeable on: Chiari malformation, venous stenosis, (occult) tethered cord, intracranial hypertension Other info: ASIA Dr. Atul Goel Location: Mumbai, India Speciality: Neurosurgery Website: https://www.bombayhospital.com/dr-atul-goel.php Contact info: See website Does online evaluations/consults : No Also treats/is knowledgeable on: Other info: Only does C1-C2 fusion Other specialists Dr. Jeffrey Greenfield Location: New york Speciality: Pediatric neurosurgery Website: https://weillcornellbrainandspine.org/faculty/jeffrey-p-greenfield-md-phd Contact info: See website Does online evaluations/consults: No Also treats/is knowledgeable on: Chiari malformation Other info: Works with Dr. Hussain Dr. Petra Klinge Location: Rhode island Speciality: Neurosurgery Website: https://brownneurosurgery.com/our-team/petra-klinge-md-phd/ Contact info: (401) 793-9166 Does online evaluations/consults: No Also treats/is knowledgeable on: Chiari malformation, (occult) Tethered cord Other info:

COMMON MISCONCEPTIONS CCI, AAI and spinal instability A Chiropractor, physiotherapist, radiologist or similar can diagnose me with CCI and AAI. - FACT: While a chiropractor, physiotherapist, radiologist or similar practitioner may recognise signs suggestive of CCI/AAI or refer for further investigation, the definitive diagnosis of CCI/AAI — given the need for dynamic imaging, specialist interpretation and management planning — is generally made by a physician (such as a neurosurgeon or neurologist) with expertise in the upper cervical spine. Everyone with CCI and AAI will need fusion eventually - FACT: Many can manage with less invasive treatments , like physical therapy and a cervical collar. A surgical fusion is a last resort in severe cases A fusion will cure CCI and AAI. - FACT: There is no cure for CCI+AAI, and while fusion can be both life saving, and significantly improves quality of life , some symptoms are likely to persist. There's currently no way to properly assess the extent of damage to the brainstem and spinal cord, which makes it hard to predict the outcome of fusion surgery, from a symptom improvement perspective. My MRI/X-ray was read as clear, so i can't have CCI/AAI - FACT: Most medical professionals are not knowledgeable on ligament laxity related instabilities, such as CCI and in some cases AAI. This means they won't order the right imaging or make the right measurements to assess it. Always see a CCI knowledgeable practitioner if you suspect you have it Any neurosurgeon can diagnose CCI/AAI - FACT: Unfortunately CCI/AAI from ligament laxity is still rarely known amongst doctors, even neurosurgeons. The misconceptions about these conditions are widespread, many have not even heard about them. Severity of measurements equal severity of CCI/AAI - FACT: The severity of ones instability is based on a mix of measurements, neurological findings and symptoms. Someone might have severe measurements, but only mild symptoms and no neurological findings and vice versa Intracranial hypertension Everyone with IH has papilledema - FACT: While it is not common, it is possible to have IH without papilledema. It's estimated that between 5-10% of IH patients do not have papilledema. IH headaches get worse when you're lying down, and better when you're upright. - FACT: While a positional headache that comes on when upright is the most common experience , what position triggers pain can vary from person to person. IH is always idiopathic/without a known cause - FACT: There's two types, one being idiopathic, the other being secondary. Recent studies have shown a link between cerebral venous stenosis and intracranial hypertension Tethered cord Tethered cord can always be seen on MRIs - FACT: Tethered cord might be occult , and therefore not be visible on MRIs Tethered cord is something you're born with - FACT: Tethered cord can be caused by an injury or trauma , such as previous surgery to the spine causing scar tissue to form Chiari malformation Only a large herniation causes symptoms - FACT: All sizes of herniations can cause symptoms, as it comes down to compression of the surrounding structures as well as blockage of CSF flow .

PSEUDOTUMOR CEREBRI/ INTRACRANIAL HYPERTENSION Pseudotumor cerebri, also known as idiopathic intracranial hypertension (IIH), is a neurological condition characterized by increased intracranial pressure (ICP) in the absence of any identifiable cause, such as a brain tumor or structural abnormality. The term "pseudotumor" refers to the fact that the condition mimics the symptoms of a brain tumor (e.g., headaches, visual disturbances, and increased ICP) but without an actual tumor being present. The condition primarily affects young women of childbearing age, especially those who are overweight or obese, though it can also occur in other populations, including men and children. Key Features Increased Intracranial Pressure (ICP): Patients with pseudotumor cerebri have elevated intracranial pressure, which can cause brain swelling, leading to the clinical symptoms of the condition. The pressure is typically not caused by a mass, like a tumor, but instead is thought to be related to an imbalance in the production and absorption of cerebrospinal fluid (CSF), or increased resistance to CSF drainage. No Structural Abnormality: Unlike other causes of increased ICP (e.g., brain tumors, hydrocephalus, or hemorrhage), pseudotumor cerebri does not involve any structural abnormalities of the brain. Brain imaging (CT or MRI) is usually normal, ruling out other causes of increased pressure. SYMPTOM S The symptoms of pseudotumor cerebri can vary in severity but typically include: Headaches : The most common symptom, typically described as throbbing, persistent, and worse in the morning. The headache may be associated with nausea and vomiting, which can often be worsened by coughing, sneezing, or straining. Papilledema : Swelling of the optic disc (the head of the optic nerve), which can be seen during a fundoscopic (eye) exam. Papilledema is a hallmark of increased ICP and can lead to visual disturbances such as blurred vision, double vision, or transient loss of vision. Optic nerve atrophy can develop if the condition is not treated promptly, potentially leading to permanent vision loss. Visual Symptoms: Blurred vision, temporary vision loss, or blind spots are common due to the elevated pressure affecting the optic nerves. In more severe cases, permanent vision impairment can result from prolonged pressure on the optic nerve. Tinnitus (Ringing in the Ears): A high-pitched ringing sound in the ears may occur, which is related to increased pressure on the structures within the brain. Neck and Shoulder Pain: Some patients report neck or shoulder discomfort, possibly related to the increased pressure and muscle tension associated with the condition. Nausea and Vomiting: Due to the elevated ICP, nausea and vomiting, particularly in the morning, are common. CAUSES There are two types of intracranial hypertension Primary / Idiopathic (IIH): Raised pressure with no detectable structural causeIdiopathic Intracranial Hypertension Secondary IH: Due to an identifiable cause that increases intracranial volume or impairs drainageTumor, venous thrombosis, trauma, etc. Secondary Causes Increased Intracranial Volume Brain tumors or masses (e.g., glioma, abscess, hematoma) Hydrocephalus (excess CSF due to obstruction or overproduction) Cerebral edema (swelling after trauma, stroke, infection, or hypoxia) Intracerebral hemorrhage (bleeding inside the brain) Mechanism: Added volume or swelling → increases total pressure in the rigid skull. Impaired CSF Absorption or Flow Venous sinus thrombosis (clot in major brain veins) Subarachnoid hemorrhage or meningitis (scarring blocks CSF reabsorption) Chiari malformation or CCI (distorts CSF flow at skull base) Spinal CSF leak (low pressure that paradoxically triggers compensatory venous engorgement) Mechanism: CSF can’t drain properly → accumulation → raised intracranial pressure DIAGNOSIS The diagnosis of pseudotumor cerebri is made based on a combination of clinical signs, symptoms, and exclusion of other causes of increased intracranial pressure. Key diagnostic steps include: Neurological Examination: A thorough neurological exam may reveal papilledema, visual field defects, and other signs of increased intracranial pressure. Brain Imaging (CT or MRI): Brain imaging is typically normal in pseudotumor cerebri, ruling out brain tumors, structural abnormalities, or other causes of elevated ICP. In some cases, imaging may reveal empty sella syndrome, a condition where the pituitary gland appears flattened, but this is not specific to pseudotumor cerebri. Lumbar Puncture (Spinal Tap): The most definitive test for diagnosing pseudotumor cerebri is measuring the opening pressure during a lumbar puncture (spinal tap). Elevated opening pressure (typically > 20-25 cm H₂O) confirms increased intracranial pressure. The cerebrospinal fluid (CSF) analysis is typically normal, which helps differentiate pseudotumor cerebri from other causes of increased ICP like infection or hemorrhage. Visual Field Testing: Visual field testing (e.g., perimetry) is done to assess for any visual impairments related to papilledema. This can help determine the extent of optic nerve involvement. Magnetic Resonance Venography (MRV): This imaging test is used to rule out venous sinus thrombosis, a condition where blood clots form in the veins of the brain, which can also cause increased ICP. TREATMENT Treatment of pseudotumor cerebri aims to reduce intracranial pressure, relieve symptoms, and prevent complications like vision loss. The management plan often includes: Weight Loss : For overweight or obese patients, weight loss is one of the most effective treatments for reducing intracranial pressure. Even modest weight loss can lead to significant improvements in symptoms. Medications : Acetazolamide (Diamox): A carbonic anhydrase inhibitor that reduces CSF production and helps lower ICP. This is the first-line medication for managing pseudotumor cerebri. Topiramate: A medication sometimes used in combination with acetazolamide to treat the condition, as it may also help with weight loss and reduce symptoms. Furosemide: A diuretic may be used in conjunction with acetazolamide to help reduce fluid buildup. Corticosteroids: In some cases, short courses of steroids may be used to control severe symptoms or acute episodes of increased ICP. Optic Nerve Sheath Fenestration: A surgical procedure in which the optic nerve sheath is opened to relieve pressure on the optic nerve. This may be considered if there is significant visual impairment or risk of vision loss. Shunt : In cases of severe or refractory pseudotumor cerebri, a shunt may be implanted to drain excess cerebrospinal fluid (CSF) and lower ICP. This is more commonly used in patients who fail medical management. Regular Monitoring : Regular follow-up visits with ophthalmology are crucial to monitor the progression of papilledema and visual field defects. Periodic lumbar punctures may be performed to measure ICP and assess the effectiveness of treatment. PROGNOSIS The prognosis for pseudotumor cerebri varies based on the severity of symptoms and how quickly the condition is diagnosed and treated. With early intervention and appropriate treatment, the long-term outlook is generally good, especially with weight loss and medical management. However, if left untreated, the condition can lead to permanent vision loss due to optic nerve damage from increased pressure. Therefore, timely management is critical to prevent complications. SOURCES https://www.mayoclinic.org/diseases-conditions/pseudotumor-cerebri/symptoms-causes/syc-20354031 https://www.hopkinsmedicine.org/health/conditions-and-diseases/pseudotumor-cerebri https://www.ninds.nih.gov/health-information/disorders/pseudotumor-cerebri https://www.mountsinai.org/health-library/diseases-conditions/pseudotumor-cerebri

CERVICOMEDULLARY SYNDROME Cervicomedullary syndrome is a proposed clinical syndrome that results from damage or compression at the junction between the cervical spinal cord and the brainstem, specifically the cervicomedullary junction. This area is where the spinal cord transitions into the brainstem, and it's crucial for controlling various motor and sensory functions, as well as autonomic processes like breathing and heart rate. SYMPTOM S Symptoms depend on the severity and location of the injury or compression but generally include a combination of the following: Motor Symptoms: Weakness or paralysis (particularly in the arms, legs, or face) Coordination problems (ataxia), difficulty with walking or balance Muscle spasms or spasticity Sensory Symptoms: Loss of sensation (numbness, tingling) in the arms, legs, or trunk Pain in the neck, upper back, or limbs Autonomic Dysfunction: Respiratory issues: Difficulty breathing or irregular breathing patterns (since the brainstem controls respiratory function) Cardiovascular problems/Dysautonomia: Irregular heart rate, blood pressure changes, temperature dysregulation, bladder and bowel issues Cranial Nerve Dysfunction: Difficulty swallowing (dysphagia) Speech problems (dysarthria) Facial weakness or drooping (due to cranial nerve involvement) Visual disturbances (e.g., double vision) Upper Motor Neuron Signs: Hyperreflexia (exaggerated reflexes) Babinski sign (an abnormal response to stimulation of the foot, indicating upper motor neuron damage) Spasticity (Increased muscle tone) Clonus (Rhythmic muscle contractions) CAUSES Cervicomedullary syndrome can be caused by various conditions that affect the cervical spinal cord and brainstem junction, including: Trauma : Spinal cord injury from accidents, whiplash, or falls can damage the cervicomedullary junction. Tumors : Growths (e.g., gliomas, metastases) in the cervical spine or brainstem can compress this region. Cervical Spondylosis : Degeneration of the cervical spine, such as disc herniation or vertebral bone spurs, can lead to compression of the spinal cord at the cervicomedullary junction. Chiari Malformation : A structural abnormality where brain tissue extends into the spinal canal, potentially compressing the brainstem and cervical spinal cord. Infections or Inflammatory Diseases : Conditions like abscesses, encephalitis, or transverse myelitis can cause inflammation and swelling in the region. Craniocervical and atlantoaxial instability : Instability of the craniocervical junction can cause compression or stretching of the brainstem DIAGNOSIS Diagnosis typically involves: MRI (Magnetic Resonance Imaging) : This is the primary imaging tool to visualize the cervical spinal cord, brainstem, and surrounding structures, helping to identify compression or damage. Both supine and upright can be relevant CT Scan: May be used to detect fractures or bony abnormalities in the cervical spine. Neurological Examination: To assess motor and sensory function, reflexes, and coordination. TREATMENT Treatment depends on the underlying cause and the severity of the condition. Some approaches may include: Surgical Intervention: Decompression surgery: To relieve pressure from tumors, herniated discs, or bone spurs. Spinal fusion: In cases of instability or degenerative changes in the cervical spine. Tumor removal: In cases of malignancy or benign growths causing compression. Medications: Steroids: To reduce inflammation and swelling, particularly in cases of trauma or inflammatory conditions. Pain relief: For managing neck pain, radiculopathy, or other discomforts. Muscle relaxants: To manage spasticity or muscle stiffness. Can be contraindicated for cases of instability Rehabilitation: Physical therapy: To help restore strength, mobility, and coordination. PROGNOSIS The prognosis for cervicomedullary syndrome depends largely on the underlying cause, the extent of damage, and how quickly treatment is initiated. Early intervention and appropriate treatment can improve outcomes. SOURCES https://pmc.ncbi.nlm.nih.gov/articles/PMC6821667/ https://pubmed.ncbi.nlm.nih.gov/28220607/ https://www.hilarispublisher.com/open-access/craniocervical-instability-in-patients-with-hypermobility-connective-disorders-2165-7939-1000299.pdf

CHIARI MALFORMATION Chiari malformation is a condition where part of the brain, specifically the cerebellum, is located lower than usual and extends into the spinal canal. This abnormal positioning can cause various neurological issues because it puts pressure on the brain and spinal cord. SYMPTOM S - Headaches : Often severe and worsened by coughing, sneezing, or straining. - Neck Pain : Particularly at the base of the skull. - Balance Problems : Difficulty walking and coordinating movements. - Muscle Weakness : Especially in the arms and legs. - Numbness or Tingling: In the hands and feet. - Swallowing Difficulties : Sometimes accompanied by gagging or choking. - Dizziness: Vertigo or a feeling of being off-balance. - Vision Problems: Blurred or double vision. MRI of human brain with type-1 Arnold-Chiari malformation and herniated cerebellum " by Basket of Puppies is licensed under CC BY-SA 3.0 . TYPES Types of Chiari Malformations: Type I - Description : The cerebellar tonsils (the lower part of the cerebellum) extend into the foramen magnum, the opening at the base of the skull. - Symptoms : Often asymptomatic in childhood, but can cause headaches, neck pain, balance problems, and coordination difficulties in teens or adults. Type II - Description : More severe than Type I. Involves more significant displacement of brain tissue and is often associated with spina bifida (myelomeningocele), where part of the spinal cord and its surrounding structures are exposed through a gap in the backbone. - Symptoms : Present at birth, can cause severe neurological issues such as difficulty swallowing, arm weakness, and breathing problems. Type III - Description : The cerebellum and brainstem extend into the foramen magnum and into the spinal canal. This is very rare and severe. - Symptoms : Causes serious neurological deficits, such as severe developmental delays and physical disabilities. Often detected at birth. Type IV - Description : The cerebellum is underdeveloped or incompletely formed. This is the rarest and most severe form. - Symptoms : Often incompatible with life due to significant brain abnormalities. DIAGNOSIS Chiari malformation is usually diagnosed through imaging techniques such as MRI (Magnetic Resonance Imaging), which provides detailed images of the brain and spinal cord. In some cases an upright MRI might be necessary, in cases where the herniation is only visible/worsens when upright. TREATMENT - Monitoring : If symptoms are mild, regular monitoring may be sufficient. - Medication : To manage pain and symptoms like headaches. - Surgery : The most common treatment for more severe cases involves surgery to relieve pressure on the brain and spinal cord. This can include a procedure called decompression surgery, where part of the skull is removed to create more space for the brain. It's important to know that Chiari decompression surgery can worsen any instability (CCI/AAI) there might be, ruling this out first can help you avoid complications. Chiari malformation is a complex condition, and treatment plans are tailored to the individual's specific symptoms and severity of the malformation. POTENTIAL COMPLICATIONS Potential Complications: - Meningitis: Infection due to bacteria entering the brain or spinal cord through the tear. - Chronic Headaches : Persistent headaches due to ongoing CSF leakage. - Neurological Symptoms : If the leak affects brain or spinal cord function. - Instability : Instability of the C1-C2 due to structural impairment after a piece of skull is removed PROGNOSIS The prognosis of Chiari malformation (CM) varies significantly depending on the type and severity of the condition, as well as the presence of related complications. Many individuals with CM-I may not experience symptoms and may live normal lives without requiring treatment. Some people may have mild symptoms, such as headaches, neck pain, dizziness, or balance issues, but these can often be managed with medication or lifestyle changes. With appropriate treatment, many people with CM-I can lead a relatively normal life. However, if left untreated, progressive neurological issues can develop. SOURCES Mayo Clinic – Chiari Malformation https://www.ninds.nih.gov/health-information/disorders/chiari-malformations https://bobbyjonescsf.org/chiari/ https://www.aans.org/patients/conditions-treatments/chiari-malformation/

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TYPE OF SCANS AND TESTS SUPINE MRI An MRI is a scan that uses strong magnets and radio waves to create detailed pictures of the inside of your body — especially soft tissues like the brain, spine, muscles, and organs. It does not use X-rays or radiation, unlike a CT scan. A supine MRI is the most common type, supine means laying down. UPRIGHT MRI (uMRI) An Upright MRI is a type of MRI scan where you are sitting or standing instead of lying down. It takes images of your body while it's under natural gravity and posture — which can reveal problems that don’t show up when lying flat. Often it's done as a dynamic scan with flexion-extension positioning. Upright MRI is the preferred imaging for diagnosing CCI. Unfortunately upright MRI machines are hard to come by, often requiring you to travel to find one. You can find the locatations of uMRIs in europe here . CT SCAN A CT scan(Computed Tomography) is a scan that uses X-rays and a computer to create detailed pictures of the inside of your body. It’s like a more advanced X-ray that shows cross-section images (like slices of your body), allowing doctors to see bones, organs, blood vessels, and soft tissues more clearly. ROTATIONAL CT SCAN A Rotational CT scan is a special kind of CT scan (Computed Tomography) where imaging is done while the head or neck is rotated to the left and right, not just in a neutral (still) position. Instead of just one static picture, it gives multiple 3D images of the bones at different head positions (usually at full left rotation, full right rotation, and neutral). This is the preferred way to diagnose AAI, also called rotational instability. CONE BEAM CT (CBCT) A CBCT scan is a special type of CT scan that uses a cone-shaped X-ray beam to create 3D images, mostly of the head, neck, teeth, jaw, and sinuses. It gives high-detail images of bones and teeth with lower radiation than a regular CT. Recently this scan has been used to create dynamic (flexion/extension) imaging, as many don't have access to an upright MRI. This scan is useful in diagnosing both CCI and AAI. MR/CT VENOGRAM A venogram is a imaging test that shows how well your veins are working. It uses contrast dye to make the veins visible on scans, allowing doctors to see blockages, narrowing, or abnormal blood flow. This test is especially useful for detecting problems in deep veins that can't be seen with ultrasound alone.It can be done both as an MRI and as a CT. It's one of the scans used to diagnose jugular stenosis and transverse sinus stenosis. MR/CT ANGIOGRAM An angiogram is a imaging test used to visualize blood vessels — especially arteries — to detect problems like narrowing, blockage, bulging (aneurysm), or abnormal connections. The word "angio" means blood vessel, and "gram" means picture — so an angiogram is literally a picture of blood vessels. It can be done as either CT with contrast or MRI with or without contrast. It can be invasive, involving a catheter (thin tube) is inserted into an artery (usually in the groin, wrist, or neck) or non invasive. It's one of the scans used to diagnose jugular stenosis and transverse sinus stenosis. FLEXION-EXTENSION X-RAY A flexion-extension X-ray is a special type of X-ray imaging used to take pictures of your spine while it’s bent forward (flexion) and bent backward (extension). This is often the first scan a doctor orders when instability is suspected, however it is rarely enough to diagnose ligamentous laxity related instability such as CCI. DIGITAL MOTION X-RAY (DMX) A Digital Motion X-Ray (DMX) is a special type of real-time X-ray that shows how your bones and joints move while you're actually moving — like turning your head or bending your neck. It’s like a video X-ray, allowing doctors to watch your joints in motion to detect problems that don’t show up when you're still. It's used by some practitioners to diagnose CCI, AAI and subaxial (below c2) instability. LUMBAR PUNCTURE (LP) A lumbar puncture (LP) is a procedure that measures cerebrospinal fluid (CSF) pressure in the lower back — which indirectly reflects the pressure inside the skull.After cleaning the skin and numbing the area, a thin, hollow needle is gently inserted between two vertebrae in the lower lumbar spine (usually between L3–L4 or L4–L5). The needle passes into the subarachnoid space, where CSF flows around the spinal cord. Once the needle is in the correct space, it’s attached to a manometer — a small, clear, vertical tube that measures pressure. ICP BOLT TEST An ICP bolt (Intracranial Pressure bolt) is a small, screw-like device used to measure pressure inside the skull (intracranial pressure) directly and continuously. The ICP bolt is a type of invasive pressure monitor. It’s called a “bolt” because it’s a hollow screw that anchors a tiny pressure sensor into the skull. INVASIVE CERVICAL TRACTION (ICT) Invasive cervical traction is a medical procedure where a pulling force is applied to the cervical spine (neck) using surgically placed pins or screws in the skull or spine to help realign, decompress, or stabilize the neck bones. Unlike regular traction (which uses external devices like a neck harness), invasive traction involves inserting hardware into bone to apply more precise or stronger traction. Some doctors use ICT to help determine if a fusion surgery would help alleviate symptoms HALO VEST TRIAL A Halo Vest Trial is a temporary, non-surgical test used to see whether stabilizing the head and neck with a rigid device (a halo vest) improves a patient’s symptoms — especially in cases of Craniocervical Instability (CCI) or Atlantoaxial Instability (AAI).