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JUGULAR VEIN STENOSIS Jugular vein compression is when one or both internal jugular veins (IJVs) — the major veins that drain blood from your brain — become partially or fully blocked due to external pressure or narrowing. This can lead to reduced blood flow out of the brain, causing symptoms related to intracranial pressure, drainage issues, or brainstem congestion. ANATOMY AND FUNCTION You have two internal jugular veins — one on each side of your neck — and they are the main drainage pathways for venous (used) blood from the brain back to the heart. If one or both veins are compressed: Blood may back up in the head Brain pressure may increase Collateral veins may form but may not drain efficiently SYMPTOM S The symptoms of jugular vein compression are typically related to impaired venous drainage from the brain, which can cause increased intracranial pressure and reduced blood flow. Symptoms may include: Headache : A common symptom due to increased intracranial pressure. Headaches may be persistent, throbbing, and worse in the morning or when changing position (such as lying down) Tinnitus: Ringing or pulsatile sounds in the ears, often caused by increased pressure in the venous system or impaired venous drainage from the brain Visual Impairment : Blurred vision, transient visual loss, or even blind spots may occur due to pressure on the optic nerves or from papilledema. Neurological Symptoms: Symptoms such as dizziness, nausea, or vomiting due to increased intracranial pressure. In severe cases, neurological deficits like motor weakness, seizures, or cognitive changes may develop. Swelling of the Neck : In some cases, neck or facial swelling may occur due to impaired venous drainage. Cognitive Impairment : Patients with jugular vein stenosis may experience difficulty concentrating, memory problems, or a general feeling of "brain fog." Seizures: In severe cases of venous congestion or increased intracranial pressure, seizures may occur due to reduced cerebral blood flow. CAUSES Bone compression : The C1 (atlas) or styloid process can press on the vein Vascular compression: Nearby arteries or abnormal veins may push against the jugular Scar tissue or fibrosis: From past surgeries or infections Tumors or masses: Can press on the vein externally Neck alignment/instability : May narrow the vein when the head is turned Often occurs in people with: Ehlers-Danlos Syndrome (EDS) Craniocervical Instability (CCI) and Atlantoaxial Instability(AAI) Eagle Syndrome (elongated styloid bone compresses jugular vein) DIAGNOSIS Diagnosing transverse sinus stenosis typically involves a combination of clinical examination, imaging, and sometimes diagnostic procedures: Imaging : Magnetic Resonance Imaging (MRI) with Magnetic Resonance Venography (MRV): This is the gold standard for diagnosing jugular vein stenosis. MRV allows detailed imaging of the venous structures and can identify areas of narrowing or occlusion in the jugular vein. CT Venography (CTV): This test can also be used to visualize jugular veins, particularly if MRV is not available or contraindicated. Conventional Venography: This invasive test, which involves injecting contrast into the venous system and taking X-ray images, is rarely used today but may be helpful in certain situations. Lumbar Puncture (Spinal Tap) : A lumbar puncture may be performed to measure opening pressure in the cerebrospinal fluid (CSF). Elevated opening pressure can indicate increased intracranial pressure, which might be secondary to impaired venous drainage from the brain. Fundoscopic Eye Exam: The ophthalmologist may observe papilledema (swelling of the optic disc), which is indicative of increased intracranial pressure and can be seen in patients with transverse sinus stenosis. Ultrasound : In certain cases, Doppler ultrasound of the neck veins may help assess venous flow and detect stenosis or clot formation. TREATMENT The treatment for jugular vein stenosis depends on the severity of the condition, the underlying cause, and the presence of complications such as increased intracranial pressure or venous thrombosis. Common treatments include: Anticoagulation: If the stenosis is due to thrombosis, anticoagulant therapy (e.g., heparin or warfarin) is typically used to prevent further clotting and manage the risk of embolism. Management of Idiopathic Intracranial Hypertension (IIH): If transverse sinus stenosis is associated with IIH (pseudotumor cerebri), treatment may include: Acetazolamide (a carbonic anhydrase inhibitor) to reduce cerebrospinal fluid (CSF) production and lower intracranial pressure. Weight loss for patients who are overweight or obese, as it has been shown to reduce intracranial pressure in IIH. Diuretics like furosemide to reduce fluid buildup. In severe cases, optic nerve sheath fenestration (a surgical procedure to relieve pressure on the optic nerve) or a lumbar peritoneal shunt may be needed. Surgical Intervention: Surgical interventions may be required to address external compression, e.g., styloidectomy, C1 shave) if anatomical structures are compressing the vein or to insert a stent in the jugular vein. Surgical fusion for CCI and AAI may sometimes help, if the compression is due to instability PROGNOSIS The prognosis for jugular vein compression is generally good if the cause is clearly identified and treated appropriately, especially in cases of mechanical compression (e.g., styloid or C1). However, outcomes can vary, especially if there are comorbid conditions like CCI and AAI, EDS, or IIH SOURCES https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-019-1344-0 https://pmc.ncbi.nlm.nih.gov/articles/PMC6726807/ https://www.sciencedirect.com/science/article/pii/S0967586825002760 https://pmc.ncbi.nlm.nih.gov/articles/PMC6489808/

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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

WEBINARS AND LECTURES Five-Year Follow Up of Craniocervical Fusions - Dr. Fraser Henderson SUBJECTS: CCI, AAI, FUSION, FOLLOW UP, INSTABILITY, TREATMENT INFO ON VIDEO All Videos Sign in All Videos Play Video Share Whole Channel This Video Facebook Twitter Pinterest Tumblr Copy Link Link Copied Search videos Search video... All Categories All Categories Entertainment Nonprofits & Activism Now Playing SPINAL CSF LEAKS: UPDATES IN DIAGNOSIS AND MANAGEMENT. HOW CAN YOUR NEURORADIOLOGIST HELP YOU? 02:05:10 Play Video Now Playing "Cerebrospinal Fluid Pathologies" - Petra M. Klinge, MD, PhD 19:05 Play Video (2019 Think Tank) Cervical Medullary Syndrome & Cranial Instability - Dr. Fraser Henderson SUBJECTS: CCI, AAI, CONSENSUS, CRITERIA, RADIOLOGICAL FINDINGS, TREATMENT INFO ON VIDEO Craniocervical Instability Lecture - Dr.Vicenç Gilete SUBJECTS: CCI, AAI, SYMPTOMS, CRITERIA, RADIOLOGICAL FINDINGS, TREATMENT INFO ON VIDEO Chiari I Malformation, EDS, and Craniocervical Instability - Dr. Paolo Bolognese SUBJECT INFO ON VIDEO Imaging of Patient with Occult Tethered Cord Syndrome - Amanda Baker SUBJECT INFO ON VIDEO The Occult Tethered Cord Syndrome -Dr. Petra M. Klinge SUBJECT INFO ON VIDEO Tethered Cord Syndrome and Ehlers Danlos Syndrome - Dr. Sunil Patel SUBJECT INFO ON VIDEO Tethered Cord Syndrome - Dr. Holly Gilmer SUBJECT INFO ON VIDEO Intracranial Venous Stenting for Idiopathic Intracranial Hypertension - Dr. Kenneth C. Liu SUBJECT INFO ON VIDEO Idiopathic Intracranial Hypertension (IIH): Advances in Treatment - Dr. Imran Chaudry SUBJECT INFO ON VIDEO

HEALTHCARE ABROAD HEALTHCARE ABROAD Before you go Research your destination’s healthcare system Find out if it’s public, private, or mixed. Learn how emergency care works — what’s the local emergency number? (e.g., 112 in the EU, 999 in the UK, 911 in the US, 000 in Australia.) Check your health insurance coverage Contact your provider to confirm if international care is included. Ask about medical evacuation (air transport) — important for serious conditions. If not covered, consider travel health insurance or expat insurance. Gather your medical information Bring a english language summary of your medical history, including: Diagnoses and allergies Current medications (generic names) Emergency contacts and physician info A symptom list is not a necessity, but can be very helpful Keep both digital and paper copies. Get necessary vaccinations or documentation Check if you need any vaccinations, new or updated. Some countries require proof of vaccinations (e.g., COVID-19). Know where to go for care Save the names and addresses of nearby hospitals, clinics, and pharmacies. Check if there’s an English-speaking medical center or embassy-recommended doctor. Check if the specialist you're seeing can assist you in case of emergency or sudden worsening of symptoms. While You’re Abroad Carry your insurance card and medical ID If you're in Europe you need to bring your European health insurance card Consider wearing a medical alert bracelet for serious allergies or conditions. For ongoing conditions Bring extra medication (with prescriptions). Keep meds in original labeled containers for customs. Know local equivalents if refills are needed. Language barriers Learn a few key health phrases in the local language (e.g., “I need a doctor”). Use a translation app for symptoms and medications. Many countries have expat medical interpreters. If you need urgent care Contact the doctor you're there to see, if theres sudden worsening of your symptoms. Go to an emergency department (ER/A&E) for serious illness or injury. For less urgent issues, private clinics often have shorter wait times. Contact your insurer as soon as possible — they can coordinate and guarantee payment. GENERAL TRAVEL TIPS Pack Strategically Bring medical documents: Include prescriptions, doctor’s notes, and emergency information. Pack extra medication & supplies: Don’t rely on local availability—bring more than you expect to need. Mobility aids: If using a wheelchair, cane, or other aids, check airline and transport policies. Bring any tools or spare parts in case of repairs. Bring adapters to charge equipment Book Accessible Accommodations Call, don’t just book online: Accessibility standards vary; a “wheelchair accessible” room may still have a step at the door. Request specifics: Ask about door widths, grab bars, roll-in showers, elevator access, if they provide aids such as a showerchair etc Consider location: Stay near accessible public transport or the hospital you're going to, to reduce commuting stress. Transportation Considerations Accessible public transit: Check if buses, trains, and metro systems offer ramps, lifts, or priority seating. Wheelchair taxis or car rentals: Reserve these in advance if needed. Parking permits: If you have a disability parking placard, check if it’s recognized in the country you're visiting. Prepare for Emergencies Emergency contact list: Include both local (embassy, emergency services) and home contacts. Insurance for pre existing conditions: Get travel insurance that covers your specific medical and accessibility needs. Plan for lost/damaged equipment: Know where to get repairs or replacements if needed. Bring a toolkit for your wheelchair/walker. Get an English language medical alert band/tag, or have your companion carry a document with vital medical infomation, in case of emergency PRODUCT RECOMMENDATIONS Portable fan - to help with temperature dysregulation A good neck pillow - to provide support and be more comfortable during travel Neck brace (if cleared by doctor) - to protect the neck and minimize symptoms Mask - to protect yourself from virus, infection and mast cell triggers Foot hammock - for comfort and to minimize blood pooling Noise cancelling headphones and sunglasses - if you’re sensitive to stimuli A medical alert bracelet - to provide important information in case of an emergency Compression socks - to minimize bloodpooling and help dysautonomia symptoms

EAGLE SYNDROME Eagle Syndrome is a condition where an elongated styloid process or calcified stylohyoid ligament in the neck causes compression or irritation of nearby nerves or blood vessels, leading to a range of head, neck, face, or vascular symptoms. ANATOMY What’s the Styloid Process? A thin, pointed bone located just below your ear. Normally around 2.5–3 cm long. In Eagle Syndrome, it’s often >3 cm and can press on: Cranial nerves (like glossopharyngeal, trigeminal, or vagus) Internal carotid artery Internal jugular vein TYPES There are two types of eagles syndrome Classic Eagle Syndrome : Nerve compression (often CN IX) Vascular Eagle Syndrome : Compression of artery or vein Polygon data were generated by Database Center for Life Science(DBCLS)[2] . CC-BY-SA-2.1-jp SYMPTOM S Classic (nerve-related): Throat or ear pain Pain with swallowing, turning the head, or yawning Sensation of a foreign object in the throat Jaw or facial pain Voice changes Vascular (vein or artery compression): Head pressure (especially when lying down or turning head) Dizziness or lightheadedness Pulsatile tinnitus (hearing your heartbeat in your ear) Visual disturbances Stroke-like symptoms (rare but serious) Often linked with internal jugular vein compression → increased intracranial pressure leading to a condition called Intracranial hypertension Symptoms can fluctuate depending on head position — turning or tilting can worsen or relieve compression. PATHOPHYSIOLOGY Anatomy The styloid process is a slender bone extending from the temporal bone of the skull, normally about 2–3 cm long. When elongated (often > 3 cm) or abnormally angled, it can impinge on nearby neurovascular structures. The stylohyoid ligament, connecting the styloid process to the hyoid bone, can also become ossified, acting like an extra bony bar in the neck. Eagle Syndrome typically manifests in two overlapping forms, each with distinct mechanisms. Vascular (Stylocarotid or Stylojugular Type) The elongated styloid process or calcified ligament compresses blood vessels, particularly: The internal carotid artery (ICA) The external carotid artery (ECA) The internal jugular vein (IJV) (between the styloid process and the C1 transverse process) Compression can lead to: Arterial irritation or dissection → transient ischemic attacks (rare) Venous outflow obstruction → increased intracranial pressure, headache, visual symptoms, tinnitus, cognitive fog This venous subtype is sometimes called “Styloidogenic Jugular Venous Compression Syndrome.” Mechanism : Mechanical narrowing → turbulent or reduced blood flow → venous hypertension → secondary intracranial hypertension symptoms. Neurological (Classic Eagle Syndrome) The styloid process or ossified ligament compresses or irritates nearby cranial nerves, particularly: Glossopharyngeal nerve (CN IX) – throat and tongue pain Vagus nerve (CN X) – voice changes, autonomic symptoms Trigeminal nerve branches – facial pain or jaw discomfort Facial nerve (CN VII) – sometimes causes ear pain Mechanism: Mechanical irritation or compression → local inflammation and neuropathic pain → referred pain to the throat, ear, or jaw. Positional Effects Turning or tilting the head can worsen compression — particularly of the internal jugular vein — explaining positional headaches or pulsatile tinnitus. Some patients develop dynamic compression seen only when the neck is rotated or extended on imaging (CT or MR venography). DIAGNOSIS Usually involves imaging to measure the length and position of the styloid process and look for vascular or nerve compression CT scan with 3D reconstruction is the gold standard (best to measure styloid) CT Venography or Angiography (CTV/CTA) – shows vascular compression Ultrasound or Doppler – for blood flow evaluation Dynamic rotational venography - shows how neck position changes venous outflow. MRV (Magnetic Resonance Venography) and cone-beam CT - provides less radiation TREATMENT Conservative management Management of pain and symptoms with medication Steroid or lidocaine injections around the styloid for diagnostic or temporary relief Physical therapy or posture correction in milder cases This approaches may relieve pain but don’t fix the structural problem (elongated styloid or compressed vein/artery). Surgical Treatment – Styloidectomy This is the definitive treatment for most symptomatic cases. Removal or shortening of the elongated styloid process May be combined with removal of calcified stylohyoid ligament Two Surgical Approaches: Intraoral: Through the mouth (tonsillar area). No external scar, but less visibility External : Small incision in the neck. Better visibility, safer for vascular cases, leaves scar Recovery time: 2–6 weeks Usually done under general anesthesia Low complication rate with experienced surgeons If Jugular Vein or Artery Is Compressed In vascular Eagle Syndrome, you may also need: C1 bone shave: C1 vertebra is also compressing the jugular vein Venous stenting : Vein remains narrowed even after bone removal Carotid artery decompression: If the elongated styloid presses on the carotid artery (rare) Complications The styloid process lies close to several cranial nerves — these can be stretched, irritated, or injured during surgery. Temporary soreness or tightness when swallowing is common. Rarely, pharyngeal scarring or dysphagia can persist, especially after intraoral approaches. Persistent or recurrent pain (if part of the styloid remains or scar tissue forms) Incomplete symptom relief (especially if venous compression is from multiple causes, e.g., C1 vertebra or ligament) Scar tissue or fibrosis causing tightness in neck muscles In rare cases, symptoms may recur if the styloid regrows or calcification continues. Picture showing measurement made on an elongated styloid PRE-SURGERY CONSIDERATIONS In vascular Eagle Syndrome, the elongated styloid process or calcified ligament can compress major blood vessels, most often the internal jugular vein (IJV) or, less commonly, the internal carotid artery (ICA). Before any surgical removal (styloidectomy), it’s crucial to determine exactly where and how the compression occurs. This matters because: Multiple structures can contribute to the narrowing. Sometimes it’s not just the styloid, the C1 vertebra (atlas) can also press against the vein. If only the styloid is removed and the C1 bone continues to pinch the vein, the symptoms such as head pressure, tinnitus, or dizziness may persist or return. Targeted surgery prevents incomplete relief. By performing pre-operative venography or dynamic imaging, surgeons can decide if the patient also needs a C1 bone shave to free up the jugular vein, or in some cases, a venous stent after surgery if the vein remains narrowed. It reduces surgical risk. Knowing which vessels are involved helps surgeons plan a safer surgical route and avoid complications related to nearby nerves and arteries. It distinguishes nerve-related from vascular symptoms. Classic (nerve-type) Eagle’s and vascular Eagle’s can overlap in symptoms, and detailed vascular evaluation helps confirm which mechanisms are at play so treatment can be tailored correctly. In short, proper vascular imaging before surgery ensures the real cause of compression is identified, the right structures are addressed, and unnecessary or incomplete surgeries are avoided. PROGNOSIS The prognosis for Eagle Syndrome is generally good, especially when appropriate treatment is provided. Most patients experience partial to full relief of symptoms after treatment — particularly after surgical intervention. SOURCES https://my.clevelandclinic.org/health/diseases/eagle-syndrome https://www.ncbi.nlm.nih.gov/books/NBK430789/ https://eso-stroke.org/blog-eagle-syndrom-a-rare-and-underdiagnosed-condition/ https://emedicine.medscape.com/article/1447247-overview?form=fpf

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

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AIRTRAVEL Flying can be a grueling process when you're sick and disabled. We've collected some tips and tricks to making the process easier Before You Fly Contact the airline in advance When booking (or at least 48 hours before travel), tell them about your accessibility needs — for example: Mobility assistance (wheelchair, electric cart, or escort) Priority boarding Seating preferences (need to recline seat, aisle seat for easy transfer) Assistance with carrying luggage or medical devices Most airlines have a “special assistance” or “accessibility” section on their website or a dedicated phone line. For electric wheelchair users. Inform the airline about the battery and dimensions of your chair ahead of time. You might need a certificate for the battery which your wheelchair manufacturer can provide Request airport assistance Many airports offer meet-and-assist services from check-in to the gate — and even through customs on arrival. They can provide wheelchairs, escorts, etc Prepare your medical or mobility equipment Label your wheelchair or other medical devices clearly with your name and contact info. Protect your wheelchair. Wrap/protect any breakable and scratchable parts, take off any loose parts, like the seat cushion, and bring it with you into the cabin. Bring a doctor’s note or documentation for any medications, implants, or devices. Check with your pharmacy beforehand, some medications require a "medication passport" Keep medication in their original container. Pack essential medications in your carry-on, not checked baggage. Pack extra medications in case you need to extend your stay Check if the airline allows you to check in an extra bag of medical equipment free of charge. Be prepared You might need a fit to fly note. This is especially important if you appear sick, as it might cause airline staff to refuse you boarding without a fit to fly note. Know your rights In the U.S., the Air Carrier Access Act (ACAA) protects travelers with disabilities. In the E.U., Regulation (EC) No 1107/2006 gives similar rights. These ensure free assistance, no discrimination, and support for medical devices. At the Airport Arrive early Give yourself extra time for check-in, security, and boarding — 2–3 hours before departure is ideal. Locate where you need to meet up with airport assistance, if you booked this. Often airports has a meeting point for this Ask for accessible security screening At TSA or security checkpoints, you can: Request a private screening. Stay seated if standing is difficult. Bring a companion or personal assistant through screening. You can notify TSA Cares in advance (U.S. program): call 72 hours before travel for help. Use accessible facilities Look for accessible restrooms, quiet rooms, and charging points for mobility devices. Most airports list these on their websites or maps. During Boarding and the Flight Use pre-boarding You have the right to board early to get settled and store mobility aids safely. Ask for help reaching your seat or transferring from an aisle chair. Communicate your needs Let flight attendants know if you need: Help stowing bags Special meal arrangements Assistance moving to the restroom Before landing, remind flight attendants that you need your equipment brought to the gate. Medical needs You can carry medical devices (CPAP, insulin, oxygen concentrator) — just notify the airline ahead of time. If you need to keep medication cold, bring a small insulated bag or ask for ice from the crew. On Arrival Request assistance at your destination An airport representative can meet you at the gate and help with: Immigration and baggage claim Transfers to connecting flights or ground transportation Double-check mobility equipment Make sure your wheelchair or devices are returned intact. If anything is damaged, report it immediately to the airline before leaving the baggage area. Bonus Tips Wear a Hidden Disabilities Sunflower lanyard if you have an invisible condition — many airports recognize this and can offer discreet support. Download airport accessibility maps or apps. Keep all medical documentation and assistance confirmations in one easy-to-access folder. Don’t hesitate to advocate for yourself — you have the right to dignified, accessible travel. Wear a mask and bring disinfectant wipes to minimize risk of catching something

Our research database contains a large amount of studies and scientific papers relating to brain and spinal conditions. All documents are peer reviewed and published in reputable journals. In cases where it hasn't been possible to verify all information, or verify that it has been peer reviewed, the file will be marked with a ❋. These are predominantly slideshows/powerpoint presentation from webinars hosted by specialists.

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

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