And some details

Kirstin promised I'd send some pseudo-medical details, so here they are.  Remember I'm enthusiastic about this stuff, but not necessarily accurate so all of you orthopaedic surgeons out there, cool it!

Dr Alkheryf is planning only on addressing C1-C2 fusion at this point, and if nothing goes wrong during the surgery, that's what he'll stick to.  Three (or four) options:

1. Wire between C1/C2 with a bone graft.  Okay, not super strong, but fairly easy to do.
2. Screws and rods.  As seen in my animation video I'd linked to previously - four screws in total (left pair, right pair) then a rod that connects each pair vertically).  Dr A's preferred technique.  Includes bone graft.  Requires lifting the nerves which is a little risky (though I didn't ask which ones - see the schematic above.
3. A single longer screw that goes from C2 up to C1 (on each side, two screws in total).  Easier to avoid the nerves, slightly riskier for hitting a vertebral artery).
4. The option he doesn't want to fall back on, but if absolutely necessary - adding a plate to the occiput and doing an occipital-C1-C2 fusion.  Less risk of artery damage, but massive limitation to motion.  This might happen if the bones are really not robust enough to anchor the screws - something that can be estimated by the CT scan (and they look okay at the moment) but won't really be know until they are drilling the holes.

As a dear friend in Oz told us, those vertebral arteries are sometimes routed in a completely wacky way, and can influence the choice.  Kirstin's, however, look normal from the CT.  They will do a CT-angiogram to double check.

The bone graft choices are to take some from the hip (another incision, potential infection site, own-bone-is-best, might not be great bone, no negative effects on hips) or to use some artificial bone (not as good as home-grown, no other incision needed).  Dr A. plans on using some of both (though I'm not 100% sure why this is a better option than just pure Kirstin...?).

The surgery is done with "navigation" (sounds reassuring compared to the alternative, doesn't it!).  I know the Ottawa Hospitals have one of these GE Discovery machines, but I'm not sure it is used for spinal work.  It allows the frame of reference of the theatre to be used, along with tags on all the instruments, to combined the CAT scan with a visual overlay of where the tools are.  

The non-surgical options at this point are limited to a life-long neck brace (which will become a vicious circle as her neck muscles atrophy through lack of use, increasing the instability).


In terms of motion restriction afterwards, we should expect about 30-50% reduction in flexion (nodding) but very little in rotation.  Kirstin will say no more easily than yes...  Recovery should take 3-6 months and will not require a halo (phew - she can be insufferable as it is when she's right!) which, in case you haven't seen one, gets screwed into the skull.  That's a relief all round. And no stay in rehab should be necessary, just some out-patient physio therapy.

Dr A was great about offering to make a referral if we wanted one, either for a second opinion or just to have someone else operate.

So, that about covers it!  Kirstin signed on the dotted line immediately, having thought most of this stuff through before thanks especially to Dr Johnson in Australia (why would you not trust a Johnson?) who had given us a great primer and interrogation technique question tips for this appointment. ['shout outs' also to Drs Dorman & Chan]  We don't have a firm date for surgery yet, but March/April is the timeframe.  Again, waiting for the methrotrexate and etanercept (Enbrel) to reduce their effect on the bones and immune system before calling on both those elements to be helpful.

Surgery is next

From K:

Dear all – The promised update! 

We spent all morning and part of the afternoon at the Civic today, meeting with first a Fellow of the Neurology Department, and then with the neurosurgeon who will perform the surgery.  They gave us an incredible amount of space for questions, explanations, etc – using both the on-screen images of my own neck and skull as well as two 3-D models with which I could fiddle and explore as they described both the state of damage, and the various surgical options.  

I’ll let Greg give the medical details – he’s better at that – I’ll do the ‘people report.’  We continued to be impressed with the general demeanour of the staff and efficiency of the place – heck, they even gave me a heated blanket with which to rest in between meetings! The Fellow was as easy with Greg’s myriad of questions as the neurosurgeon had been, and the meetings were sufficiently enjoyable (lots of laughter) that at one point Greg had to lecture the Fellow and I that we were off topic again, and at another point the Neurosurgeon (exhausted as he looked – he’d just come from ICU) totally sassed Greg. 

We like these folk.  As our medical friends have reminded us, how well one likes one's doctor weighs little against his or her skill in the operating room  - yet years in and out of hospitals have also taught me that neither is it completely irrelevant.  We have heard good things about this neurosurgeon’s reputation; the Fellow’s respect for him as both a practitioner and person was clearly evident (as well as a sense of privilege to be working with him); he himself seems appropriately confident in his own skill and ability for the required work… the big question is, am I willing to put my life in this man’s hands? And I can confidently answer that yes, I am. 

“Life in hands” is not an exaggeration – the surgery will be nowhere near as complicated as Greg’s was (no cutting into brain!), however the risks are there, and they are dramatic. Basically, if something goes wrong on this one, it’s likely to go very wrong. But we’ll not plan on that happening.  :)  The good news for those of you out there with RA (I know there are a few) –> the neurosurgeon says that the need for this surgery is increasingly rare, as the new meds mean that RA is usually sufficiently controlled that this sort of damage seldom happens to non-elderly RA patients now. This is one more reminder of how much medicine has advanced in this area of disease in the past couple of decades. To have RA at the beginning of the 21^st century is a completely different sentence than having it at the beginning of the 20^th – including a significantly different life expectancy. Hurrah for those doing the research, and for those who support them! We’ve mentioned some of the ‘newer meds’ already in previous posts, as they are in part what I have to go off of until after the surgery. As said earlier, we'd been told that (given the dangerous state of my neck) the surgery is well overdue already ...and yet that reality aside, the preferred time to wait to get the meds out of my system would be 2 years  - but even regardless of the subluxation, that is problematic from the perspective that the RA would then advance at an even more rapid rate throughout my body, especially compromising the very bones they are needing to fuse (and the joints etc around them). 

So ….given the current scenario….the surgery is proposed for March -- minimal "medicine-out-of-the-system" time with which the surgeon is comfortable. They won’t be able to confirm the exact date until 2-3 weeks beforehand (normal practice), but I’ve signed the consent papers and it’s all a go now. If all goes according to plan I should be up and about for my summer adventures…though I’ve been told no riding until autumn (which stinks!), so please come visit and play with Søley if you are in the area and know how to ride! I’ll pass over to Greg at this point – with one more ‘hurrah’ which may sound minor, but trust me, it really is not: while I’m stuck with this cervical brace until the surgery, I am now allowed to sleep with it off! Hurrah!!! I can’t wait to go to bed tonight!  

Dear all –

 A bit of an update:

Two weeks of 24/7 stabilization in the cervical brace has done Kirstin some good – her neck/head pains, and bouts of vertigo and instability when moving, are less than they were…which means she’s been able to lower her morphine dose a bit. Whether that will have to start rising again now that her body’s going to start missing its usual meds will wait to be seen. At least conducting conversation is not usually painful anymore! Sleep is a challenge – she’s never really comfortable – but that’s the trade-off for the protection. She had the MRI but will not see the neurosurgeon until next Friday to discuss the results. We’re taking it as a good sign that nothing unexpected has shown up, that the appointment is not until then.  Hopefully on Friday we will have a better sense of when the surgery is to be, more specifics on the radiology results, etc. In the interim we’ve had the incredible gift of both medical friends and friends with fusion and C1/C2 damage experience, with whom to converse. Our next-door neighbour (who has had RA for 38 yrs) had a full C-fusion performed by the same department just 2 years ago, and was full of great advice, information – and lectures! [well-warranted] J It was really good to talk to someone who knew about the situ from an RA perspective. Another local friend is well-familiar with the department (and the joints!), and both have confirmed the good reputation of the neurosurgeon now assigned to Kirstin. The overview from friends of the medical data suggests that the surgery is likely to be the least invasive one: the fusing of the atlas & the axis. ‘Here’s hoping! An evening with another friend who is a Rheumatologist (in town for a workshop), gave an opportunity for even more questions, advice, insight, etc. How incredible that we have so many folk in our lives who can give such specialized input!

We will update after next appt. In the meantime, so many thanks for your care, prayer, support. It means a lot to us.

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.

Starting again

Some of you took a journey with us over at http://myacousticneuroma.blogspot.com - the last time we had a neurosurgeon in our lives!  This time, it's Kirstin who is looking at a C1-C2 cervical fusion.  We'll try to keep everyone up to date through this page.  Hopefully you can even subscribe to it, just so you only need to come to the site if something has changed.