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Hi All-
Here's note #2. We've been to TCI (The Chiari Institute) and extended our visit by a week to continue the testing. I'm still waiting to get some more information and final reports, but here's what we know right now.
The initial testing on Wednesday February 24 went fine. Tiring and long, but no mishaps. There were several MRIs (full brain & spine, CINE, etc) and a 3D CT Scan (see images of my CTs here...amazing technology.)
On February 25 we met with one of the neurosurgeons, Dr Bolognese. Great doctor, good manner too. As he sees it there are 3 issues: instability of the craniocervical junction, Chiari Malformation, raised CSF pressure.
He requested that we reschedule our plan for returning to the Bay Area so I could be admitted to the hospital for further testing. They sedated and put me under to put on head tongs and do a lumbar puncture. The testing was a traction/suspension test where I spent 3 hours with an increasing amount of weight pulling my head up from the tongs, then 2 hours off. This basically showed how many of my symptoms would probably be relieved by stabillizing my neck. This showed exactly what they were looking for...a marked relief of symptoms. There is an expectation that this is the basis of many of the neurological symptoms. The lumbar puncture showed that my CSF pressure was high, but not unbelievably so. They think that this will be resolved by the other surgery.
After a day and a half of testing they took off the clamp and recommended surgery. The surgery will fuse the top 4 of my cervical vertebrae & also do a limited decompression (removal of part of the skull in the back). I'll put up more info on that here as I get it. In the mean time you can see pix of the head tongs test that happened during the hospital admission.
And here are the
other notes I have from the visit, that are just additional bits beside the
3 main issues (instability of craniocervical junction, chiari malformation,
raised CSF pressure).
- My posterior fossa is low & small
- My c1 arch is large and very close to my skull (they pay attention to the
location of the cerebellar tonsils in relation to this in their recommendation
for surgery, but instead of my cerebellum being down to the c1, they are down
what would otherwise be a slightly less significant amount, but the c1 is really
high, so could be causing a larger amount of problem)
- My pituitary gland is a little flat, but not a lot (waiting to hear if this
could be affect regulating my thyroid)
- The hyperextensibility is a big deal in the fact that the ligaments around
the cranio-cervical junction are also hyperextensible...(the instability of
the cranio-cervical junction)
- His top concerns of my symptoms were the swallowing problems, nausea, sleep
apnea & the heart arrhythmia. This was surprising to me as they aren't the
ones that I have had the most concern about.
-There is crowding of my brain stem, but it is high up...in the medulla range,
not in the cerebellum range as one would expect
- My left cerebellar tonsil is larger than the right which he went on about
at some length, also the right one is devided by a blood vessel, almost making
it look like I have 3 tonsils
-There is some cervical stenosis
That's about all I know right now. I need to do some research and figure some more stuff out....I'll add more links here so check back soon.
Love,
Kriss