Worth The Fight (WTF!)

Struggling with intractable pain day in and day out is exhausting. Our doctors are not taught about it and It can be hard for the most well intended loved one to truly understand. Having a support system of people that share your struggle can make all the difference in the world! Join us and get plugged in!

Find out more

Pathological Comorbidities

There are several conditions that can push or pull your cerebellar tonsils down past the foramen magnum creating an "Acquired Chiari Malformation" scenario. If doctors checked for these pathological comorbidities before decompression surgery, decompression surgery might have a better success rate.

CSF Leaks

Spinal leaks can pull your cerebellar tonsils downward creating an "Acquired" Chiari Malformation scenario. Sadly, most doctors get so caught up on the size of the herniation that they seldomly check for leaks that rarely show up on MRI imaging.

Tethered Cord

Having a tethered spinal cord can cause a pulling down of the brainstem and cerebellar tonsils associated with an "Acquired" Chiari Malformation scenario. When decompression surgery creates a larger hole at the base of the skull, it does nothing to solve the pulling down problem created by the tethered cord, and the decompression fails.

Craniocervical Instabiity

Craniocervical Instability is a problem in the way that the skull and C1 are interacting with one another. When this problem exists, it can cause the tonsils to prolapse creating an "Acquired" Chiari Malformation scenario. Failure to deal with this problem before or soon after decompression surgery can lead to a failed decompression.

Intracranial Hypertension

A Chiari Malformation has been recognized as one of the causes of Intracranial Hypertension (IH/IIH), but research has now shown that it can also cause the cerebellar tonsils to fall, creating an "Acquired" Chiari Malformation scenario. Despite recent research, many doctors continue to decompress as a means of relieving the increased pressure, and the decompression fail because the underlying cause failed to be addressed.

Syringomyelia

When a doctor talks about the “most serious” complications surrounding Chiari Malformation, they usually speak of paralysis or death. While both of these are far less common than the array of other symptoms and complications, they both can involve that of a syrinx.

Worth The Fight (WTF!)

Pathological Comorbidities

CSF Leaks

Tethered Cord

Craniocervical Instabiity

Intracranial Hypertension

Syringomyelia

"Makes legit posts with great info."

Dana H.

"I love how this page advocates for Chiari!"

April C.

"Lots of really good info."

Jessica H.

"Alot of information to help us on our journey. the zoom meetings have been especially helpful.x"

Elaine R.

"They are very informative and a great resource for all!"

Jen B.

"When you are lost and searching for support, this group is hands down the best place to be. They are here to teach, guide, and encourage you in the fight!"

Ruthe J.

"I am so very grateful for this information. Its a place that I can come and not feel so overwhelmed. I can read, re-read, share, help me put into words my questions for the medical community and explanations to friends and families."

Kim M.

"Chiari Bridges helps me by, not only teaching me about my condition, but also giving me the tools to educate others about the many different aspects of it. It is an extremely valuable resource!"

Sarah H.

"They offer up-to-date comprehensive information on Chiari and it’s comorbids that you cannot find anywhere else on the web. They are a lifesaver for those who are just navigating this condition."

Tiffany R.

"Continued education on Chiari. Love this!"

LeeAnna T.

"I use this site a LOT and it has helped so very many people understand everything and help get the proper medical care and understand they are not crazy, that their symptoms are not psychological. I am so grateful to you and the others who have compiled everything, done the much needed research into everything and put everything here and so easy to read and understand! Thank you so much for your dedication to helping this Community!"

Heather W.

"This site and community are so wonderful, helpful and supportive. Super detailed articles, with a ton of information and citations to back it up. Definitely the top site that I use to help me navigate and educate myself along this crazy complex Chiari journey."

Chasity D.

"I'm so grateful that Chiari Bridges exists to give people like me the information I need to be able to stay on top of my health and not just believe everything I'm told. It has helped me to get the right care and hopefully I'm on my way to feeling better."

Linda K.

"Getting more information here than from any of the doctors that have dealt with my daughter's Chiari dilemma."

Cindy S.

"This is such an amazing site for patients and their families or care givers!! Love this so much💜🦓 5 stars ⭐️ ⭐️⭐️⭐️⭐️"

Christina R.

"Great information! Caring and knowledgeable site."

Dori C.

"Education is power. This site offers just that on Zebra conditions also known as Rare Conditions."

Tonja B.

"Learning more everyday. Thank you for providing all of this information."

Karen P.

"This is a very exceptional site! So very educational! Thank you so much for all hard work you do here."

Vicki F.

"A great deal of information provided by Chiari Bridges has been such a help. Great support!"

Don G.

"Awesome source of information!!!"

Amanda M.

"Awesome info for us, our doctors, and anyone willing to learn more about us."

Joy S.

"Very informative! 5 Stars!"

Rebecca M.

"Finding this page very informative as I’ve found out recently how my family is affected by EDS."

Elaine B.

"Love this page and the folks on it!! Lots of information, love in this group!!"

Sheila K.

"Chiari Bridges is more than a support group, its a learning center. I love having a page that gathers the best information from the best in the medical community. Well done."

Pam J.

"Chiari Bridges is supportive & inspirational. Great page to follow."

Nikoli N.

"Such an amazing site that is helping too educate thousands, including myself. I love how all the articles are based off publish medical papers or journals that are easy for us too print out and take too doctors. Thanks too everyone who continues too volunteer their time, and knowledge too write the articles, builds and maintains the site and too all whom donates too keep it going."

Amy S.

"Fantastic site helping those like me bring awareness and information! So grateful!"

Kristen C.

"I love Chiari Bridges! The information here surpasses any and all. The knowledge gained from here is beyond what you will find anywhere else!"

Connie W.

"Thank you so much for spreading awareness of EDS and Chiari! We need to have as many people aware as possible! Keep up the great work!"

Becca V.

"So thankful for this page/group of people!! An amazing resource!!!"

Melissa H.

"Very impressed with the knowledge found here and the desire to help our community. Thank you!"

Pauline G.

"Absolut fantastisk initiativ. I små lande med offentligt sundhedssystem er det svært for læger at følge med i udviklingen i forskningsfeltet, når det kommer til sjældnere diagnoser. Dette går ud over patienterne. Denne side giver gode og letforstålige forklaringer for patienter (og med oversættelsesfunktion!) og desuden links til de som ønsker at undersøge emnerne yderligere. Top initiativ og 10 stjerner fra mig!" Translation: "Absolutely fantastic initiative. In small countries with a public health system, it is difficult for doctors to keep up with developments in the field of research, when it comes to rarer diagnoses. This goes beyond the patients. This page provides good and easy to understand explanations for patients (and with a translation function!) ) and also links for those who wish to study the topics further. Top initiative and 10 stars from me!"

Majbrit J.

"Thank you for bridging the gap! This is a great resource for the Chiari community."

Melissa D.

"Chiari Bridges helps fill a void in the community."

Erica R.

"Whoever thought of this page awesome. Wow! Love it!"

Jennifer J.

Give us feedback...

Chiari Bridges was built by patients for the benefit of patients going down the road after them. If you have any ideas for improvement or questions, we want to hear from you!

Give us feedback...

Disclaimer: The information provided on our website is strictly for educational purposes in order to help further the understanding of Chiari and its associated conditions. You should in no way use this site as a replacement for diagnosis, treatment, or medical advice from a qualified medical professional.