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.
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 21st century is a completely different sentence than having it at the beginning of the 20th – 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).
“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 21st century is a completely different sentence than having it at the beginning of the 20th – 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!
Thank you so much for this update. Had you both in my heart and prayers all day yesterday. Glad you get to sleep without the brace and that the team is 'there for you'.
ReplyDeleteLove and hugs
Kara and Alex