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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

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

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

This medical binder template has everything you need to start your own medical binder. It's perfect for collecting the important information a new specialist will need to know. It includes: Diagnosis overview Medication overview Allergies Medical devices/treatments Symptoms Important personal information such as bloodtype, contact info etc and more! Download it here (colored version) Or here (grey version)

SLIDESHOWS CCI/AAI Neurosurgical management of Hereditary Hypermobility Connective Tissue Disorders Cervical instabilities in the EDS population Recognition of Craniocervical Instability in complex Chiari patients Retethering in Ehlers-danlos syndrome Urological manifistations of Tethered cord syndrome Tethered cord syndrome in Ehlers-Danlos syndrome Tethered cord IJVS + IH

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TRANSVERSE SINUS STENOSIS Transverse sinus stenosis refers to the narrowing (stenosis) of the transverse sinus, a large venous channel in the brain responsible for draining blood from the brain toward the internal jugular vein. The transverse sinuses are part of the dural venous sinuses, which are specialized blood vessels within the dura mater (the outermost membrane surrounding the brain) that collect venous blood from the brain and direct it toward the jugular veins. When there is stenosis (narrowing) of the transverse sinus, it can obstruct the normal flow of blood from the brain, potentially leading to increased intracranial pressure and other neurological symptoms. This condition is also referred to as transverse sinus thrombosis if the stenosis is caused by a clot. ANATOMY The transverse sinus is located on each side of the brain and runs along the back of the skull. It collects venous blood from the brain's internal structures, such as the cerebellum, brainstem, and cerebral hemispheres, before draining it into the internal jugular vein. The sigmoid sinus is a continuation of the transverse sinus, leading directly into the internal jugular vein, and from there, blood is returned to the heart. SYMPTOM S The symptoms of transverse sinus stenosis 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 transverse sinus 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 Transverse sinus stenosis can result from various conditions, including: Venous Thrombosis Transverse sinus thrombosis is a condition in which a blood clot forms within the transverse sinus, leading to stenosis or complete blockage. This can occur due to various factors, such as: Hypercoagulable states (conditions that increase blood clotting, like certain genetic disorders, cancer, or pregnancy). Infections (e.g., sinusitis or otitis media). Trauma or surgery in the head or neck region, particularly if there is damage to the venous system. Oral contraceptives, pregnancy, or hormone replacement therapy (all of which can increase the risk of clotting). External Compression: Tumors, cysts, or enlarged lymph nodes around the neck and base of the skull can compress the transverse sinus, leading to narrowing and reduced venous outflow. Atherosclerosis: Although less common in veins, atherosclerotic plaques can form in the venous system and contribute to stenosis of the transverse sinus. Idiopathic Intracranial Hypertension (IIH): Also known as pseudotumor cerebri, IIH is a condition characterized by elevated intracranial pressure without an identifiable cause. The high pressure can lead to narrowing or stenosis of the venous sinuses, including the transverse sinus. Congenital Anomalies: Some individuals may have an inherent narrowing of the transverse sinus due to structural or developmental abnormalities in the venous system. Fibromuscular Dysplasia: A rare condition that causes abnormal growth in the walls of blood vessels, including veins, which can lead to stenosis in the transverse sinus. 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 transverse sinus stenosis. MRV allows detailed imaging of the venous structures and can identify areas of narrowing or occlusion in the transverse sinus. CT Venography (CTV): This test can also be used to visualize venous sinuses, 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 transverse sinus 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 venous 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. Endovascular Procedures: In cases of severe stenosis or thrombosis, endovascular procedures like angioplasty (dilating the narrowed sinus) or the placement of a stent to keep the vein open may be considered. Surgical Intervention: Surgical interventions may be required to address external compression, such as tumor removal, or to insert a stent in the stenosed transverse sinus STENTING Transverse sinus stenting is a medical procedure used to treat venous sinus stenosis — a narrowing of the transverse sinus. It’s most commonly done in patients with Idiopathic Intracranial Hypertension (IIH)/Pseudotumor cerebri when high pressure in the brain is linked to this narrowing. It’s usually considered when: A person has Idiopathic Intracranial Hypertension (IIH). There is evidence of transverse sinus stenosis on imaging (MRI/MRV, CT venogram). Other treatments (like medication or weight loss) haven’t worked. A pressure gradient (> 4–10 mmHg) is found across the stenosis during venous manometry (a catheter-based pressure test). How the Procedure Works Venous access is typically gained through the femoral vein (in the groin). A catheter is threaded up through the venous system into the transverse sinus. A stent (a mesh-like tube) is placed in the narrowed area to hold it open. This improves blood outflow and can reduce intracranial pressure. PROGNOSIS The prognosis for transverse sinus stenosis depends on the underlying cause and the promptness of treatment. If the condition is diagnosed early and treated effectively, especially in cases of venous thrombosis or IIH, the outcome can be favorable. However, untreated stenosis may lead to chronic increased intracranial pressure, permanent vision loss (due to papilledema), and in severe cases, stroke or cognitive decline. SOURCES https://radiopaedia.org/articles/transverse-sinus-stenosis https://www.sciencedirect.com/science/article/pii/S2772687824001053 https://pubmed.ncbi.nlm.nih.gov/38983575/ https://pmc.ncbi.nlm.nih.gov/articles/PMC11410061/ https://pubmed.ncbi.nlm.nih.gov/21799038/

CRANIOCERVICAL INSTABILITY ATLANTOAXIAL INSTABILITY CCI and AAI are two forms of spinal instability, affecting the skull-C1 vertebrae (CCI) and C1-C2 vertebrae (AAI). They are both structural instabilities that can lead to pathological deformation of the brainstem and upper spinal cord. This page mainly focuses on CCI+AAI caused by lax ligaments failing to keep the craniocervical junction stable. SYMPTOM S Symptoms include Headache Neck pain Altered vision Diplopia Nystagmus Tinnitus Hearing loss Dysautonomia Postural orthostatic tachycardia (high heart rate upon standing) Orthostatic intolerance (Pre) syncope Dizziness Vertigo Urinary tract dysfunction, urgency, frequency GI dysfunction, constipation Weakness Spasticity Clumsiness Altered sensation, numbness (dysesthesia, paresthesias) Abnormal gait Paralysis Sleep apnea Sleep disorders Fatigue Choking, dysphagia Trouble breathing Slurred speech, dysarthria DIAGNOSIS CCI and AAI is diagnosed based on three things - 1) imaging, 2) symptoms and 3) positive neurological findings. A neurosurgeon will look at a patient's imaging and take certain measurements, such as the clivo-axial angle, which if abnormal suggests CCI or AAI. However these measurements cannot stand alone. A neurosurgeon will also go through the patients symptoms, past medical history and do a neurological exam. The symptoms and neurological findings are important to make a final diagnosis while also assessing the severity of the patient's condition. For diagnosing CCI, an upright flexion extension MR(uMRI)I is the gold standard. A digital motion xray(DMX) can be used to further confirm the diagnosis. An ordinary supine brain MRI should also be done to rule out or diagnose comorbidities such as intracranial pressure issues, chiari malformation etc. For diagnosing AAI, a rotational CT scan is considered the gold standard. An upright MRI with rotation can also be used to make a diagnosis. MEASUREMENTS CAUSES There's a number of different conditions that can cause CCI and AAI, some which are widely recognized, while others are still relatively unknown by many medical professionals. The common ones include Autoimmune connective tissue disorders such as rheumatoid arthritis and lupus Genetic conditions such as downs syndrome and osteogenesis imperfecta Conditions causing tumors in the craniocervical junction, such as Neurofibromatosis Other acquired bone conditions such as Paget's disease Severe trauma to the craniocervical junction and head Less commonly known is Hereditary connective tissue disorders, also known as hypermobility syndromes, such as Ehlers-danlos syndrome and the hypermobility spectrum disorders Trauma to the craniocervical junction(CCJ) , that would usually be considered less severe, such as whiplash Grisel syndrome, subluxation of the atlantoaxial joint (C1/2) due to inflammatory ligamentous laxity following an infectious process in the head and neck In these two conditions the instability do not stem from a malformation or degeneration of the bone, but from the ligaments in the CCJ being too lax, to properly stabilize the vertebra. In conditions such as ehlers-danlos syndrome, the laxity comes from a genetic defect of the connective tissue, while in cases of trauma, the laxity stems from the ligaments being stretched during the traumatic incident. MANAGEMENT Unfortunately there's no cure for CCI and AAI, but there is different ways to manage it. The main ones being physical therapy, symptom management, bracing, and as a last resort a spinal fusion surgery can be done. In mild to moderate cases, physical therapy, bracing and treating symptoms can be enough to manage the patient's condition. The physical therapy and symptom management will vary from patient to patient, however isometric neck exercises are one of the most common recommendations. Symptom management might include treating conditions caused or exacerbated by CCI and AAI, such as dysautonomia, medications to manage pain, nausea etc In severe cases this won't be enough to manage the condition, and spinal fusion will be recommended. SURGERY ... Sources https://link.springer.com/article/10.1007/s10143-018-01070-4 https://www.researchgate.net/publication/316895469_Occipito-atlanto-axial_Hypermobility_Clinical_Features_and_Dynamic_Analysis_of_Cranial_Settling_and_Posterior_Gliding_of_Occipital_Condyle_Part_2_Findings_in_Patients_with_Post-traumatic_Condition https://www.researchgate.net/publication/5773233_Syndrome_of_occipitoatlantoaxial_hypermobility_cranial_settling_and_Chiari_malformation_Type_I_in_patients_with_hereditary_disorders_of_connective_tissue https://www.ncbi.nlm.nih.gov/pubmed/28961036

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