WELCOME TO SPINE AND BRAIN ADVOCATE
Please excuse us while we update our website. Some links may not work but the 2nd Radiology Opinion links and service is still available. Thank you for your patience.
The purpose of this website is to succinctly and efficiently help patient’s and their caregivers overcome common challenges many patients face when trying to investigate highly complex spine and brain issues such as craniocervical junction disorders. Below you will learn how this website is organized so that you can move through it with ease and find the information that you need, as well as a list of a few of the many typical challenges that patients face, with directions on where to look in the website for possible answers or suggestions.
This site hopes to gather and organize all the wealth of knowledge that is available and organize it in a way that is relevant and easy to use and understand. Of course, we always welcome suggestions and medical studies or articles to improve this website, feel free to contact us. We only ask for your patience as it is updated on a volunteer basis.
Jump to What’s Most Relevant:
HOW THIS WEBSITE IS ORGANIZED IN THE MENU
1. Mission Tab
In short, our mission aims to help people with medically based information in the CCI Learning Center, to support people who are unable to obtain imaging craniocervical junction measurements locally by providing 2nd Radiology Opinion services through expert and knowledgable CCI Radiologists; and to become a Craniocervical Instability Change Champion, leading awareness and advocating change at all levels, with initiatives such as the Patient Experience Survey. You can also learn who’s behind Spine and Brain Advocate, and how it came to be.
2. Shop Services Tab
i. CCI Awareness Ribbons are on sale to help raise awareness as well as raise funds to help pay for championing change initiatives such as hiring medical professionals to research and update the website with relevant articles; hire PhD Medical Statistics (Informatics) professional(s) to analyze and produce the CCJ Patient Experience Results Report etc.
ii. Obtain expert 2nd Radiology opinion reports on your imaging. Our consultants credentials have been fully vetted and tested for knowledge on spine, brain and craniocervical junction disorders. Sample templates of the reports you can expect to receive are located in each service (or soon to be posted there).
iii. Ask an Associate Professor of Medical Education to Research a Topic on your behalf. This service might be an excellent way to save your energy and have a professional research and write a summary citing medical references to understand your diagnosis and/or treatment options with up to date medical research information.
3. CCI Learning Center Tab
The CCI Learning Center contains key information provided in a summary format with medical study or article references included.
The topics in this tab include:
SOME OF THE TYPICAL CHALLENGES PATIENTS FACE INCLUDE:
(1.) A physician’s lack of clinical suspicion of spine and brain conditions (such as craniocervical instability, cerebrospinal fluid leaks, adult tethered cord, intracranial hypertension etc.), and lack of understanding of the bigger “craniospinal hydrodynamic” picture and congenital conditions, such as Ehlers Danlos Syndrome (EDS), making the investigation and diagnosis of craniocervical junction disorders difficult for patients.
One challenge patients most commonly face is that the majority of physicians were educated that craniocervical junction disorders are extremely rare. They have not been trained to suspect craniocervical instability unless there is a case of severe rheumatoid arthritis, high velocity trauma with an unconscious patient, down syndrome, or in very rare cases where a child has a severe upper respiratory infection and develops neurological symptoms (Grisel’s syndrome). In fact, many patients have been told, “if you had craniocervical instability, you wouldn’t be standing here… you’d either be dead or in surgery” or “craniocervical instability isn’t a legitimate condition”. Essentially, physicians are taught that craniocervical instability (historically, more specifically atlanto-occipital dissociation or atlantoaxial instability) is an acute and rare occurrence and hence, majority do not make the CCJ connection with their patient’s history, physical exam and symptoms, leaving the patient’s without adequate healthcare.
However, leading experts on craniocervical instability, such as Neurosurgeon Dr. Paolo Bolognese mentions in this video, have much better visibility on craniocervical junction pathologies, including adult infections, traumas with conscious patients and congenital conditions like Ehlers Danlos Syndrome. He has examined, diagnosed and treated these kinds of patients in his practice for almost 4 decades. (Note: We do not endorse or have any affiliation with Dr. Paolo Bolognese or any physicians other than our researchers and radiologists)
For patients with Fibromyalgia and ME/CFS, it may be helpful for physicians to be brought up-to-date on recent, preliminary medical studies on Fibromyalgia and ME/CFS patients and their abnormalities of the craniocervical junction.
It would be optimal for physicians to come to an understanding that craniocervical disorders seem to be less rare than previously stated, and to become more clinically suspicious of craniocervical junction disorders. Unfortunately at this moment, the onus is on patients to learn from this website’s CCI Learning Centre (and other reliable sources), and bring whichever articles that are relevant to their treating physician(s) and to advocate for the diagnostic investigations or referrals to specialists outlined in the articles. Lastly, as part of the Spine and Brain Advocate’s mission, it will act as a CCJ change champion leading awareness and advocating change at all levels.
(2.) A physician’s limited knowledge of leading diagnostic tools and craniocervical junction measurements.
Typical current practice guidelines for preliminary screening for craniocervical instability is lateral XRays ( possibly in flexion and extension). This is preliminary diagnostic study to help rule out craniocervical instability but it is by no means extensive.
Roughly in the past 10 years, new imaging technology has definitely advanced, and physicians around the world are beginning to understand the importance of dynamic imaging (i.e. imaging done in different head and neck positions), motion imaging such as the Dynamic Digital Radiography (DDR), and completing CBCT ( best for investigating bony structures and measuring), MRI studies (best for investigating soft tissues) and MR Angiograms and Venograms for a more wholistic view of all of the major components of the craniocervical junction.
(3.) A radiologist’s outdated knowledge and inexperience in craniocervical junction measurements; or in some cases, outright refusal to complete any measurements because they believe craniocervical junction abnormalities are “glaringly obvious”, meaning causing spinal cord compression in neutral supine position (i.e. laying down).
When obtaining a detailed report that includes craniocervical junction measurements, reviews for signs of intracranial hypertension, elongated styloids and the list of common disorders is impossible locally and the wait to consult with an out of state or out of country CCI knowledgable neurosurgeon is months away, you can obtain 2nd radiology opinion reports from our certified and CCI knowledgeable consultant radiologists and get your report in approximately 1 – 2 weeks.
(4.) A patient may need help advocating for healthcare with their local primary care or specialist physicians.
This website focus’ on providing relevant, up-to-date summaries and articles on spine and brain investigations, diagnoses, and possible treatment options, so that patients can have informed discussions with their local healthcare providers. With the speed of information these days, it is nearly impossible for physicians, especially primary care physicians to be up-to-date on all things medically-related, so at certain times, these reference articles can be a helpful tool in advocating for testing, referrals or treatment.
Together, let’s make everyone knowledgeable and aware of Craniocervical Instability and advocate changes to healthcare to end the suffering of these patients, their family and friends.
Have any suggestions to improve our website? Tell us here.