Connective tissue is found everywhere in the body and supports the skin, bones, blood vessels . Inflammation Masquerading as Depression — A Case Study of ... craniocervical instability — instability of head & neck bones compressing the brain stem or upper spinal cord. TOPIC 101s and Overviews Advocacy and Other Research/Etc atlantoaxial rotary instability Autoimmune basilar invagination . Craniocervical Instability — The Zebra Network This petition had 1,291 supporters. Putting one on her low back helps the feet spasms. These include headaches due to migraines, muscle tension, intracranial hypertension, craniocervical instability, and cervical spine disorders, temporomandibular joint disease, carotid dissection, and other physical conditions. Preoperatively, a note should be made of the joints that sublux most often, craniocervical instability. Craniocervical Instability (CCI) is often missed by doctors and radiology imaging reports, yet it is a very serious and debilitating condition to have. I am 22, have hypermobile EDS, POTS, Autoimmune Autonomic Neuropathy caused by autoimmune disease called Sjogren's, and a plethora of the comorbidities that go with all of those things. Where the patient is hooked up to heart rate and blood pressure monitoring. To complicate matters further, both disorders can coexist […] Craniocervical Instability- 2011 POTS- 2014 Miserable Malalignment Syndrome- 2014 Hashimoto's- 2016 Graves'- 2017 MCAS- 2017 Gastroparesis & delayed intestinal dysmotility- 2017 Autoimmune Neutropenia- 2019 Iron deficiency with anemia- 2019 Autoimmune Small Fiber Polyneuropathy- 2021 Another POTS patient, Rachael, has craniocervical instability (CCI) in addition to a host of other related conditions like Ehlers-Danlos. Some of those patients reported they felt a reduction of symptoms during traction. I have had 3 surgeries (wrist, port placement, and craniocervical instability), 4 new diagnoses (POTS, EDS, hypothyroidism, and CCI-craniocervical instability), and the start of appropriate treatment for many of my conditions. She said the cervical vertebrae may be sliding out of place and constricting the vertebral artery, which causes the brain to panic and cause the dysautonomia symptoms. There's also plenty of anecdotal evidence of people with ME responding well to Mestinon, such as Jennifer Brea (prior to her being in remission due to surgical correction of her craniocervical instability). Background: Several authors have postulated that cervical instability is a major cause of traumatic spinal pain. Introduction. (i.e., did you start having terrible head an. I didn't have a diagnosis then, of any of my conditions. Joshua has been diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), EDS (Ehlers Danlos Syndrome), ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), CCI (Craniocervical Instability), AAI (Atlanto-axial Instability), and Lyme Disease. EDS patients commonly suffer a variety of headache types. Craniocervical Instability is a structural problem of the craniocervical junction. He lectures on the anatomy, physiology and functions of the autonomic nervous system, including the system's relationships with POTS, chiari, and CCI etc. Cranial Cervical Instability (CCI) is a medical condition where the strong ligaments that hold your head to your upper neck are loose or lax (3). Damage to the nerve can cause problems with dizziness, balance, vertigo, an inability to remain upright, and horizontal nystagmus — all symptoms associated with craniocervical junction. Vitamin, minerals, etc. Le […]" #hEDS #Nightingales #pwme #POTS My diagnoses were craniocervical instability, tethered cord, ME/CFS, MCAS, POTS, and mold illness (which may or may be fully explained by MCAS). Craniocervical instability (CCI) is a type of . Grabb, Mapstoneand Oakes measurement (> 9mm suggests high risk of ventral brainstem compression) 40 Pradeep Chopra, MD They are studying how Mestinon impacts hemodynamics and oxygen uptake, which are relevant to both POTS and ME. :85 Craniocervical instability is a medical condition with numerous names, including cranio-cervical instability (CCI), cranial instability, cranio-cervical syndrome . There can be many other conditions that complicate the clinical picture, to include mast cell activation syndrome (MCAS), craniocervical instability (CCI), spinal fluid leaks, migraines, small fiber neuropathy, autoimmune disorders, as well as inflammatory and infectious diseases. Since about 2 days after the surgery (coming up on 3 weeks now), they've been experiencing vertigo and dizziness every day. Postural orthostatic tachycardia syndrome (POTS) is an autonomic disturbance characterized by symptoms of orthostatic intolerance that are associated with the presence of excessive tachycardia, light headedness, fatigue, sweating, tremor, exercise intolerance, syncope upon standing. It refers to an excessive degree in mobility of the joints and junctions in the craniocervical area, mainly due to a ligamentous hyperlaxity. Dysautonomia and Craniocervical Instability (CCI) Youtube presentation by Dr Fraser Hendersen. . CSF leaks can be treated often through 'neck bed rest' in . Craniocervical instability is common amongst hypermobile connective disorders such as Ehler Danlos Syndrome (EDS) that affects up to 1% of the population. Craniocervical Instability Craniocervical Instability (CCI), also known as the Syndrome of Occipitoatlantialaxial Hypermobility, is a structural instability of the craniocervical junction which may lead to apathological deformation of the brainstem, upper spinal cord, and cerebellum. /Eye orthostatic intolerance orthostatic tolerance Other Conditions/Considerations Pain Pediatric Physical Therapy POTS Pregnancy Pseudotumor Cerebri . r/POTS. Ehlers-Danlos syndrome is a group of disorders that affects the connective tissue. I remember laying prostrate on our couch when we got home. Inflammation is a defining characteristic of several of Lauren's conditions, including hEDS, craniocervical instability, and Chiari malformation. 1. What Is Craniocervical Instability Ehlers Danlos Syndrome? After the craniocervical fusion, she woke up with temporary remission from POTS symptoms. I'm curious about the connection between craniocervical instability and POTS in relation to my own symptoms, and wondered if those with the condition could answer a few questions. Other spinal conditions that may cause or contribute to ME/CFS/FM/POTS include cerebral spinal fluid leak and intracranial hypertension. Harris Measurement (instability if > 12mm) 3. Some of these conditions include craniocervical instability (CCI), Chiari malformations, tethered cord syndrome, Eagle's syndrome, and cervical stenosis. By Jeff Wood I built a new model of ME/CFS through my own research. Many studies have drawn attention to the presence of craniocervical instability or basilar invagination in patients with Chiari one and Chiari zero malformation [1-23].The need for reduction and stabilization in basilar invagination and craniocervical instability are recognized in connective tissue joint degenerative disorders, such as rheumatoid arthritis and lupus [10, 17, 24 . It can affect the entire body and manifest in many ways including cardiovascular, dermatological, gastrointestinal, neurological and respiratory symptoms. Therefore, craniocervical instability basically is an incompetence of the ligamentous and bony elements to support or hold the weight of the skull and the movements of the skull with respect to the cervical spine. CCI occurs when ligaments from the skull to the spine don't restrict unsafe movement. POTS, positional orthostatic tachycardia syndrome, is a type of autonomic dysfunction in which patients experience symptoms and signs with upright posture. Spinal CSF leak also causes symptoms and signs that are worse with upright posture. Sometimes it takes a second to find the right spot, but it will stop the tremors. (2) The connection between migraine and diet in EDS. (3) The impact of migraine in all types of EDS and how common it is. Ehlers-Danlos Syndromes involve a mutation in one of the collagen genes. CASE 2. It is thought that 1 in 15 people with Ehlers-Danlos syndrome go on to develop CCI due to lack of connective tissue support at the craniocervical junction. To complicate matters further, both disorders can coexist […] Heart function/structure problems, such as rapid heart rate upon standing (postural orthostatic tachycardia syndrome, POTS) and a hole between the chambers of the heart. For instance, patients suffering from POTS had an increased peripheral chemoreflex in response to hypoxia, which is usually associated with an increase in sympathetic activity, but a decreased central sensitivity to CO 2 [ 129 ]. One day in June 2012, an infectious disease doctor at Massachusetts General Hospital ordered 30 vials of blood be drawn from my veins. When correctly identified and treated, it is life-changing for the patient. PT wants her checked for craniocervical instability, although she didn't use that phrase specifically. Craniocervical Instability (CCI) is a structural instability of the craniocervical junction. NHS to provide CCI, AAI & Chiari surgery in the UK to all EDS patients. If you are interested to learn more about CCI from a first-hand perspective you can check out Rachael's YouTube channel or her blog called Gone To POTS. The major ligaments involved are the Alar, Transverse and Accessory ligaments. POTS is a form of orthostatic intolerance that is associated with the presence of excessive tachycardia and many other symptoms upon standing. A healthy individual usually has a slight increase in heart rate—by about 10-15 beats per minute—within the first 10 minutes of standing. Our Mission: To encourage research that could bring relief to the many people who have Ehlers-Danlos Syndrome (EDS) or related conditions, including Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), Craniocervical Instability, Chiari Malformation and Tethered Cord Syndrome. View the DYNA brochure, here! My symptoms began with a very forceful valsalva, which is a known cause of CSF leaks, but not of CCI. When that glue fails to hold, everything seems to go awry; specifically, as related to Acquired Chiari Malformations: organs tend to prolapse, and bones begin to shift . Our MCAS program includes comprehensive evaluation, diagnosis, and treatment. Emily Bean started this petition to NHS and 2 others. We're IIH Experts. This can lead to pathological deformity of the brainstem, spinal cord and cerebellum (hind brainstem). Along with fatigue and nausea, pain has been one of the defining symptoms of my daughter's illness. The evaluation standards include extensive, careful, objective testing to identify potential underlying structural problems. AAI can occur as a result of abnormalities or trauma associated with c1-c2… Also feeling a pressure in the center of the face. Craniocervical Instability- 2011 POTS- 2014 Miserable Malalignment Syndrome- 2014 Hashimoto's- 2016 Graves'- 2017 MCAS- 2017 Gastroparesis & delayed intestinal dysmotility- 2017 Autoimmune Neutropenia- 2019 Iron deficiency with anemia- 2019 Autoimmune Small Fiber Polyneuropathy- 2021 Craniocervical instability is common amongst hypermobile connective disorders such as Ehler Danlos Syndrome (EDS) that affects up to 1% of the population. *This is the beginning of Josh's story and updates of the worsening progression and quick decline in health are in periodically attached . Thread by @jenbrea: "just wanted to share with you a new diagnosis. But she can't order the testing herself. Questions for Future Research Answers & Hope in Maryland with Dr. Fraser Henderson To learn more about CCI please click on the video below. They are prone to temporomandibular joint subluxation, obstructive sleep apnea and tracheomalacia, spontaneous pneumothorax, POTS, MCAS, insensitivity to local anesthetics and coagulation disorders. Clivo-axial angle (normal 140 to 160 degrees) 2. In December of 2018, one week after her craniocervical fusion, she had surgery for tethered cord release. Things it could be: Chiari malformation, Craniocervical instability, Ligament laxity, Cerebrospinal fluid leak, side effects of a hypermobility disorder (like Ehlers Danlos), POTS, Intracranial hypertension. There are a few types of POTS and multiple causes such as Ehlers-Danlos, Chiari and Craniocervical Instability Symptoms can include: Diagnosis is via autonomic testing, mainly through a test called a Tilt Table. 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