Well...
First of all, there is no treatment for anyone with Collet-Sicard. It is a syndrome, a collection of symptoms that are found together when the lower brainstem is compressed.
I had hopes of the "extraction" craniocervical fusion at TCI in NY to be the answer. I knew (and still know) that an extraction upwards and then fixation would decompress those nerves within the brainstem. Alas, that surgery is not offered to me now.
I would like to seek out Dr. Henderson at Bethesda and see what he thinks. He has done numerous fusions on elderly people who have suffered cranial settling due to old age, cancer, and rheumatoid arthritis.
But, why try to get the definitive diagnosis of Collet-Sicard from Dr. Connolly who headed the collection of authors of the article I found on a Jefferson Fracture resulting in CS Syndrome?
I have a diagnosis of "glossopharyngeal damage" early after my injury, so that confirms lower brainstem damage. I have been told by my NY neurosurgeon that my C1 is compressing the brainstem. I've also learned from his neurologist that I have low lying tonsils that are also compressing the lower brainstem. So, why bother?
I guess the main reason is it is interesting, medically speaking. The Connolly article states that his patient, a 56 yr old man (in 2000) whose JF evolved into CSS is the "only" known such case recorded in medical articles dating back to the 1960's.
There IS another article, the one from China, about an 18 yr. old man, another case where a JF evolved into CSS. Again, in this article, they write that this is the only case recorded in medical history.
So...there have been two. Mine is another one to add to the list. And maybe, there are more out there, and maybe doctors should start paying more attention to patients who come into their care with fractures of the C1 arches (Jefferson Frx).
