Six months ago, Monday August 3rd, 9:15, I was just walking from the ward to operating theatre.
So, an update.
Actually, I sat for 1/4 hour in the recovery room, waiting. It was bizarre. Because the room is for post-op patients, it has no beds, so they gave me a fold-up chair to sit on
At 1.30 I was in the same room, the same bay, but with staff milling around and talking at me.
As described in post #1, the op was to remove a chunk of skull, the back of C1 vertebra, and 'fusing' (inserting screws and rods) skull/C1/C2.
As also said, I'd been told 3 or 4 days in, so it was quite a shock to have a CT on Tuesday and then be told to get out (not quite that blunt), there was a definite drive to clear the ward (two small wards and side rooms) presumably as a covid reduction measure. As much as it was good to get home (being on hourly checks overnight meant little sleep), the pain was unpleasant.
This was in the rigid collar, that I'd been told could be up to 6 months. At 3, I pestered for CT and the results eventually confirmed sufficient bone fusing to allow the start of physio. December 17th was the first actual physio, including advice on using a soft collar for 'weaning off' the rigid collar. First day completely without a collar was January 2nd. Hurrah!
Several pages of exercises from the physio, as well as neck strength and mobility, actually for strengthening from the legs up too.
Two questions:
1. What has the op achieved?
The op was two address two things: Chiari and brainstem compression.
Headaches have substantially reduced, both continuous and the specific Chiari signature headaches.
Walking and balance has been the big win. I'm no longer dragging or stubbing my left foot. Here's an example of something - seemingly simple - that I can now do: walk from the kitchen, carrying two mugs of tea, in turn stand on one foot to kick off slippers, walk to the foot of the stairs, a 180° turn and up the stairs. Simple now - before just the turn would have been in two stages.
No change to the nystagmus (eye wobbling). I have physio exercises for this, but have (with physio's agreement) eased off on these as they require rapid head/neck movement.
2. Will the second op be needed?
I'm hoping that the improvements in walking will render it unnecessary. Call with consultant next week to discuss.
Finally, the really good news - my major concern - I drove on Saturday