#chiariawarenessmonth

@taylorswift it would be super cool if you could show support, you are the angel that gets me through the fight.

Chiari Awareness Month: Chiari affects over 300,000 people in the US. Chiari is a serious neurological condition in which the brain herniates through the skull putting pressure on the nerves and spinal cord disrupting the normal flow of cerebrospinal fluid flow causing debilitating pain and life threatening symptoms. @chiari_crusaders . . #crushchiari #iwearpurpleforacure #chiari #chiariawarenessmonth (at Austin, Texas) https://www.instagram.com/p/B3C6R5np4c9/?igshid=1f74lu1696wuw

Chiari Fact #28 Chiari 1.5 and an Acquired Chiari DO NOT have the same meaning and therefore it is incorrect to use the words synonymously. However, when the brainstem is herniated along with the cerebellar tonsils (Chiari 1.5), it is a good indication that an Acquired Chiari exists and that there is another pathological cofactor to the Chiari that needs to be found and treated BEFORE DECOMPRESSION. There are pathological cofactors that are less likely to herniate the brainstem, so pathological cofactors should be checked even if you have a Chiari 1 malformation. If our doctors looked for and addressed these co-factors prior to decompression, the number of failed decompressions and post-operative brain sags, would significantly decline. For more information on Chiari Types (including Chiari 1.5 and Acquired Chiari): https://chiaribridges.org/chiari-malformation/ For more information on cofactors pathological to Chiari: https://chiaribridges.org/overview-chiari-comorbidities-etiological-pathological-cofactors/ #ChiariBridges #ChiariMalformation #ChiariAwareness #ChiariAwarenessMonth #dontbeafraidtobeaunicorn #letyourweirdlittlelightshinebig https://www.instagram.com/p/BoRUvD-ngHE/?utm_source=ig_tumblr_share&igshid=xa42e6tbgxln

I never knew there were different kinds of chiari. Chiari Fact #26 In 1998 a study was done on 5 patients that had Syringomyelia (a condition in which a CSF filled cyst forms inside the spinal cord, further compromising the spinal cord itself), but no hindbrain herniation. The presence of the syrinx was indicative of something obstructing the flow of CSF (and four were symptomatic), but because of the lack of tonsillar ectopia, they were not considered Chiari Malformations. -What they discovered was that the blockage of CSF alone causes problems, even serious ones like Syringomyelia. -This finding alone demanded a reevaluation of all they knew about Chiari. http://thejns.org/doi/abs/10.3171/jns.1998.89.2.0212?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3dpubmed In 2011, a Turkish study again showed the significance of a blockage of CSF alone, when a 38 year old man with Syringomyelia was shunted and despite the successful draining of the syrinx, his condition returned 9 months later because the obstruction of fluid (the cause of the syrinx) was allowed to remain. https://www.ncbi.nlm.nih.gov/pubmed/21534216 #ChiariBridges #ChiariMalformation #ChiariAwareness #ChiariAwarenessMonth https://www.instagram.com/p/BoMG5LlnT2c/?utm_source=ig_tumblr_share&igshid=16pwxzjulk6zh

I currently have a CSF leak that I will be getting a blood patch for very soon. Maybe that will make this fun 24/7 headache go away. Chiari headaches cannot be medicated away, they come and go as they please...or they don’t. #justanotherdayinchiarimalformation paradise #letyourweirdlittlelightshinebig #chiariawarenessmonth #dontbeafraidtobeaunicorn https://www.instagram.com/p/BoB0XHYHgVS/?utm_source=ig_tumblr_share&igshid=x9ceg9n4j1lr

Chiari Fact #21 CSF Leaks can happen anywhere in the dura mater, so that makes them particularly difficult to find at times. If you have had a lumbar puncture or epidural, that is a likely place to start, but for the Ehlers-Danlos Chiarian, they can happen without an obvious cause in a phenomena known as a Spontaneous Leak (and many doctors don't know of this phenomena, nor the association between leaks and EDS). These leaks can be particularly hard to find. MRIs often miss them. CT myelogram & digital subtraction myelogram are often the best methods, but because they require puncturing the dura, they can often cause a leak (or additional leak) at the point of puncture. For more on CSF Leaks & Low Pressure: https://chiaribridges.org/cerebrospinal-fluid-leaks/ #ChiariBridges #ChiariMalformation #ChiariAwareness #ChiariAwarenessMonth https://www.instagram.com/p/Bn_N90Pn8Yt/?utm_source=ig_tumblr_share&igshid=981h6n6r4sr8

When the “medical professionals” who are supposed to be the authority on whatever condition you are battling are constantly and consistently telling you that you are crazy and that things are all in our head, and basically calling you a hypochondriac, not only do you begin to question your symptoms and your sanity, but so do your friends and family. Having an invisible illness is demoralizing and it makes you feel alone and secluded in a world of people who just don’t understand because you don’t “look” sick. Be kind. You have no idea what someone is battling on a daily basis.💜🙏🏻💜 #letyourweirdlittlelightshinebig #dontbeafraidtobeaunicorn #chiariawarenessmonth #iamabutterflywarriorandazebrahowaboutyou? https://www.instagram.com/p/Bn8zwzMHZNp/?utm_source=ig_tumblr_share&igshid=1celf61mt6t28

Chiari Fact #14 Occipital Neuralgia is a commonly known neuropathy associated with Chiari, but Chiari can cause Peripheral Neuropathy as well (especially when the Chiari causes a syrinx). Several pathological cofactors and comorbids, such as Tethered Cord syndromes and Spinal Stenosis (both of which are common with Ehlers-Danlos syndromes) can cause Peripheral Neuropathy as well. So we often have multiple issues (all stemming from one general collagen issue) attributing to all the pain we feel. Related info: http://www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Chiari-Malformation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4300794/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2796052/ #ChiariBridges #ChiariMalformation #ChiariAwareness #chiariawarenessmonth #letyourweirdlittlelightshinebig #chiarisyringomyeliascoliosisneuropathyedsfatigueandsomuchmore https://www.instagram.com/p/BntNBIPlPUV/?utm_source=ig_tumblr_share&igshid=1vn44e33u3ttd