From Kirstin:

I’ve been home for a few days and the combo of ‘enforced bed-rest’ and rigid discipline of my lovely 24/7 cervical brace is allowing for longer spells of lucidity b/n morphine doses & sleep :-) – so I thought I’d try to scribble out an update.

(I did the following on and off thru the day, so it may be a bit disjointed, and it is def verbose – scan as you see fit).

We were in Ermerg Observation at the Civic until Sunday night … at which point they decided that we were a ‘responsible’ enough duo (!) to have me sent home to ‘behave’ until an MRI slot was free. The hope was that that would be w/in 48hrs – however, although I was at the top of the cancellation list the first slot avail is first thing Friday morning. A myriad of tests were done at the hosp over the approx. 30 hrs I was there, and I saw all number of medics -- the neurosurgeon at 2a.m on Sat. (Greg stuck around that late, bless him!).  I have to say: we’ve had an awful lot of hospital experience b/n the two of us, and the Civic def comes out on top as the most impressive team thus far in their care and general demeanor. It actually overflowed into the general mood of the busy Sat night Emerg waiting rooms. Impressive.



We were partic impressed with the neurosurgeon.  Good communication skills, patient w/ questions (Greg’s pretty good at firing challenging ones!), honest w/ prognosis, etc etc. It was a huge relief when he said that typically -- b/c he’d overseen all my emerg tests -- I would be shifted from my referred (and yet to be seen) surgeon, to him …. though that was entirely our call. We’d been a little concerned about the referred-but-yet-to-be-seen surgeon I’d been assigned by my rheumatologist, as we’d read less than flattering reports from a number of different sources. This new chap – Greg was quick to source – rates as one of Ottawa’s best.

The long & short of it all right now is that I def will have surgery, but the MRI yet is required to discern exactly which one. What’s concerning folk is that I have what is called Atlantoaxyial Subluxation – not unusual for longterm RA folk to develop, though usually not b/f they are senior citizens. Mine is a bit severe, hence the need for surgery. The condition currently causes severe headaches, dizziness, pain across face & skull, impedes concentration & sometimes motor control – but the big concern is that it threatens spinal cord, nerves, arteries, etc. Any ‘big bump’ at this point could cause quadra/paraplegia – or worse. The hope is that a fusion of C1 & C2 is all that will be necessary – the other two options would 1) involve metal plates in scalp, or (because there is long-term degeneration in C5-7) fusion of full cervical vertebrae. (The latter would mean never driving again – that’s still a poss with the other two, but hopefully not.)

As you know, we are blessed w/ a ridiculous number of medical friends, and Greg’s been on the phone w/ a few. On Tuesday night we skyped w/ Michael Johnson (our wedding MC, and my co-staffer in IV) in Melbourne – where, as head of the Orthapaedic Surgery Dept, 50% of his work is on exactly these types of cervical-spine surgeries, only on children.  !  The timing was pretty good, as I had just had my first post-hosp shower, after which Greg was supposed to replace the brace insert with a new dry one, whilst I lay ‘inert.’

Thanks to modern technology, Michael oversaw the entire procedure (rendering it rather humorous instead of stressful), directing Greg w/ ‘insider’ tips – and then lecturing me for various motions I was still attempting whilst in brace! But what was a particular gift was that Greg was able to send Michael my Nov x-rays (we don’t have the new ones yet), and go through them with us. Everything Michael said/saw concurred w/ the Ottawa doctor, and -- whilst keeping in mind that matters have progressed (we hope to be able to send Michael the new x-rays and the MRI, and have another ‘consultation’ set up with him), and only the MRI will reveal what exactly is happening w/ the spinal cord -- Michael too is hopeful for just a C1/C2 fuse.

He then talked about the three main methods of doing this, and his preferred, as well as issues around bone grafts due to my RA etc – and again, everything concurred w/ the (new) Ottawa doctor. It was partic great for Greg to be able to pummel Michael w/ questions, as that (possibly!) means a little less pummeling for the Ottawa doc! [ed: nonsense!  It means I have even more...]

    Were I not an RA patient, the surgery (in whatever form) would proceed pretty quickly, but b/c I’m on cytotoxic drugs and anti-TNFs, we will have to wait up to 2 months until those are out of my system (as they would prevent post-surgery healing, and cause greater risk of internal infection). That means two months w/out those meds (lotsa morphine!) – and two months of the RA progressing w/out hindrance. (This is actually one of the main reasons it was decided not to proceed w/ my foot surgery, as too many bones were implicated considering the healing/infl impediments) (I’ve been on the cytotoxic for 15 yrs, the anti-TNFs for 11). So…that’s not a great scenario, but the only option at the mo.


Part of the frustration in all of this is that I obviously should not have got to this state w/out intervention.

When we came to Ottawa I had a fantastic Rheumatologist, but, unfortunately, he retired 18 months ago…right around the time my headaches/focus-impediments started getting significantly worse. My new rheumatologist figured this was just concussion ‘residue’ and never had x-rays done – despite C5-7 degeneration already having been id’d by x-ray previously, and all the symptoms being spot-on for indicating subluxation…

Fortunately I ‘pushed’ in November – frustrated that whatever was wrong was impeding my ability to work so much – and he almost reluctantly agreed to an x-ray…and phoned me that night to say that there was indeed an issue.  Unfortunately at that point I should have been ‘rushed’ to attention, but the neurosurgeon (the one I shan’t be seeing) seems to have seriously dropped the ball. (And the Rheumatologist should have been telling me no riding, no skiing, no skidooing, etc!)

OK, I think that that’s seriously more than enough info, but should bring everyone up to scratch. Basically at this point it’s just a lot of sleep & low-key-ness (and morphine!) until surgery – w/ a few decisions & consultations in between. Apparently recovery is about 4 months. Greg’s been making jokes about needing to bust a tendon or something, if I’m gonna be competing w/ adding neurosurgery to my CV too…

With thanks for your care & prayers --

Love,
One of the two
Never-boring-Johnsons

(ps -- the incident which sent me in on Sat night? An over-enthusiastic leaning back to look at the stars!!!)