What a surprise. I was reading a report written by an "Agreed Upon Medical Examiner" who saw me in his office last month for evaluation. He included pages and pages of detailed references he'd read and studied from my voluminous medical history. He caught something I never was told.
He read the report from my follow up in NY last May. I have not asked for a copy of this report, it just slipped my mind. And I have an additional diagnosis. Surprise.
"Functional Cranial Settling" per the good doctors at TCI.
So, I've done some investigation into FCS. I did not know that Cranial Settling is the same thing as Basilar Invagination. That is where the bony finger that sticks up from the C2, known as the odontoid or dens, sticks up through the foramen magnum into the brain. It's something of a big deal. I didn't realise I had this.
Here are some internet quotes I've found on FCS:
Cranial Settling The uppermost bony portion of the neck is called the dens or odontoid process. The skull rests on this process and rotates. Cranial settling occurs when this bone protrudes into the hole in the base of the skull called the foramen magnum. This can be congenital (from birth) or from conditions such as Paget's disease or arthritis. Cranial settling can cause pain in the lower part of the skull and upper neck. It may also cause compression of the spinal cord, which may cause extremity weakness and numbness. This condition can be treated by surgical removal of the dens followed by instrumented cervical fusion. http://www.bcm.edu/neurosurgery/defs/def_a-d.htm (Baylor)
tip of odontoid process, which may be expanded by surrounding pannus, is brought into contact with the cervicomedullary (brainstem) junction; http://www.wheelessonline.com/ortho/atlanto_axial_impaction_basilar_invagniation
The C-1 ring continuity prevents horizontal spreading caused by the wedging of C -1 between the occiput and C-2 and thus prevents cranial settling. www.aans.org/education/journal/neurosurgical/june99/6-6-7.asp-46k - (this shows me exactly what happened to me. I do not have C-1 ring continuity. I have a one inch gap between bone ends at one fracture site. Certainly it spread and allowed my skull to settle where it should not be.
Cranial settling is described in conjunction with rheumatoid basilar invagination and atlanto-axial instability, possibly representing the most life-threatening abnormality associated with rheumatoid arthritis. (however mine is not RA related by due to trauma) http://www.ncbi.nlm.nih.gov/pubmed/8303459
"Cranial settling, also called superior migration of the odontoid or basilar invagination"
This is something serious. I knew my skull had rotated backwards, but did not realise that I had basilar invagination, though it is something I have suspected for a couple of years. Dr. B had told me in May that my brainstem compression was due to the C1 and where the brainstem goes through it.
However, it is also GOOD in a way and I thank God I saw it. It gives me more, very clear and firm reasons to feel confident in moving forward in getting the fusion. I actually am confident now...but this just seals the deal.