Keeping the heads on
Our mission to help patients getting diagnosed, increase the availability of medical diagnosis centers that can rule out symptoms of Craniocervical Instability, and fund research so more knowledge and treatment options can be developed.
Craniocervical Instability Fund
We are patients too…
While having been suffering ourselves, tossed aside without diagnosis, watching our friends suffer, leaning towards support groups on Facebook. Because of the loss and further lack of personal finances, lack of knowledgeable doctors in Craniocervical Syndrome, as well as the failure to script for proper imagine studies… What were we to do?
We felt compelled to build this website first as an awareness and place of knowledge to help guide patients in their journey, and raise awareness among relatives, friends and others. Will this work? We don’t know for sure. Most funding organizations have healthy, able-bodied team who already has funds to begin running right away. We have volunteers who while having symptoms help where they can.
Please visit our patient stories page to see how living with CCI symptoms is and some of the patients we want to help find answers!
What is CCI?
Below is a video from dr. Centeno (Centeno-Schultz Clinic) about CCI, and about the alternative non-fusion way of treatment before consider such a course.
Causes of CCI
- Injury that causes torn tissue in ligaments or skull supporting muscles
- Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders (hereditary) can progress to cause CCI
- Rheumatoid Arthritis (RA): depending on the degree of damage to the individual joints and ligaments RA-related cervical spine instability takes the form of atlanto-axial subluxation, subaxial subluxation or cranial settling.
Why CCI Fund?
Although there are many diagnosis that mimic symptoms of CCI which we will cover on our website to help guide patients in verifying if it “really is CCI”.
The problem: Most are quickly diagnosed as a “psychological” case. One mother was told “your daughter is just seeking attention” while having EDS, Vascular Tortuosity (cervical vericose veins / collaterals), seizures and more. None of which was found on the CT-A Scan. Many patients lay in bed, may lost their jobs. In the U.K. one patient has been waiting months just to get an X-Ray while his head clunks, gets weakness, numbness, dizziness.
We hope with your support we can grow more imaging facilities (Cone-Beam CT, Digital Motion X-Ray, Upright MRI), and also to grant doctors who are researching new ways to treat this pathology.
Become a volunteer
Help us by raising awareness,
fundraising and volunteering. You can make the difference!
Locate Professional
Search out growing database of CCI Specific Professionals, Imaging Facilities and more.
Learn
Learn more about Craniocervical Instability, symptoms and related disorders and patient stories.
Our goals
Raising awareness among family, friends and doctors
Support patients in getting their diagnosis and treatment
Sponsor research on causes, diagnostics and treatment of CCI
News & Articles
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