About Spine and Brain Advocate
January 1, 2010, my wife had a recreational accident just outside of Toronto, Canada. We spent lots of time and money going from one healthcare professional to another, and many specialists for several years but we didn’t get any solid answers when trying to find out what was causing her severe symptoms of widespread pain, extreme fatigue and cognitive issues, neurological issues, random, severe and unexplainable anaphylaxis and rashes, flailing arms and legs upon physical exertion, amongst many other health issues that is just too long to list here. As we later found out, her MRI Cervical Spine was missing images of her upper cervical spine, also known as the craniocervical junction. Imaging was “normal“. Blood tests mostly normal except inflammatory markers 5 times normal.
They eventually gave her the diagnosis of Fibromyalgia but on our own, through a lot of research and information provided by Dr. Peter Rowe, Dr. Gordon Ko, Jennifer Brea and Jeffrey Wood she received a diagnoses of craniocervical instability (and more) due to ligament damage (laxity). How much better would she have recovered if it was diagnosed sooner? We will never know because that time has passed.
Over these years, we have come to understand that the majority of the world’s medical professionals haven’t been appropriately trained to diagnose nor treat spinal instability due to ligament laxity, nor similar or co-morbid disorders like Chiari Malformation or EDS, yet there are substantial medical papers written on this condition and very knowledgable physicians on these conditions.
Thanks to the 2020-2021 Covid Pandemic, my business went into lockdown and that’s when I thought of the idea of trying to help people with similar stories through this website, raise awareness on CCI, spine and brain issues, and lobby for healthcare changes. I registered a not-for-profit corporation in Canada and will be working on this part-time to help patients investigate CCI and lobbying for healthcare changes.
I am not a medical professional and to be very clear – I leave this work to screened, vetted, verified and contracted medical professionals. Spine and Brain Advocate’s contracted medical professionals are instrumental to ensuring users receive the most recent, valid scientific information from research articles; and comprehensive 2nd opinion Radiology Reports from credible Radiologists. That said, I’d like to note a special thanks to the Contract Radiologists and the majority of this website’s content contributors: Assoc. Professor Medical Education, Research Expert & Published Medical Author, A. Bokhari, Dr. E. Deng M.D., and Dr. F. Suleman, Neurosurgeon.
You can find more about Spine and Brain Advocate’s mission, championing change, multifaceted healthcare for CCJ Disorders under the tab called Mission.
Best and kind regards,
Hanler
