Another nothing day in limbo... Bright, windy, and cold - temperature down to just 2C. I stayed in the house all day, got some paperwork etc. done, slept a bit...
Just waiting for Tuesday and discovering what the neurosurgeon Mr.D has in store for me. And for Monday when we should get the hoist fitted to my car, which should lead to a huge increase in my ability to get around, as well as meaning Sue will have to do much less wheelchair pushing. And for the next set of blood test results...
Hmmm indeed. And Ha. Mmmm. Which is all my way of saying that this morning's meeting with Mr.D wasn't altogether satisfying or what I was hoping for. Nothing against him, he gave us over an hour and was very thorough in going through the various scans. But the short story is that he will discuss with colleagues ("we do everything as a team") and we'll have a video meeting next week. So it's more delay, which is the last thing I want.
To my surprise he's downplaying the whole subject of surgery (and he's a neurosurgeon!), emphasising that the main aim is to stop things getting worse rather than making them better. I hope he's just doing a bit of expectation management before next week. I said everyone else has been talking about some metalwork to stabilise the upper spine, but he wouldn't be drawn beyond "that's a possibility." He's more talking about a couple of screws for C1/C2 and possibly C3 as well but I'm not yet at all clear as to how that would work. Perhaps my anatomy isn't quite good enough.
When we were talking about spinal cord compression he said that in a way I have had a stroke - just in the spinal cord rather than in the brain. Interesting thought.
Well, that's enough for now. I just have to wait another week and try not to do any more damage...
Days are either quiet with very little to write about, or full of new things. Yesterday was the second kind.
It started with an early 'phone call to Springfield to cancel today's neurologist "review" appointment, as agreed earlier with his secretary. Will re-make that appointment later, if there seems to be any point. Then I had an email from Mr.V's secretary who also turns out to be secretary for Mr.D, metalwork expert neurosurgeon at Brentwood Nuffield. She gave me a couple of phone numbers for appointments there. I rang one and to surprise (and delight) got one for 11:10 today. At that point I thought I'd better call AXA (insurers) to bring them up to date. All OK there, and they confirmed that if they want to treat this as a separate new claim for administrative reasons, it won't affect my No Claims Discount. That's quite a relief.
Then another email came in bringing with it Mr.V's clinic letter and a couple of scan reports. Here they are:
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X-Ray report:
EXAMINATION DATE: 11/03/2022 Examination: XR Cervical Spine
EXAMINATION: XR Cervical Spine
CLINICAL INDICATION:
Old odontoid peg fracture.
FINDINGS:
Lateral, lateral flexion and lateral extension views were obtained.
There is minimal anterior slip of C6 on C7. No instability has been demonstrated. In particular, no instability is seen in the upper cervical spine.
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CT report:
EXAMINATION DATE: 11/03/2022 Examination: CT Cervical Spine
Addendum created at 11/03/2022 12:35:57:
Addendum to previous report.
I note the history of myeloma. No destructive cervical spine pathology has been
demonstrated.
EXAMINATION: CT Cervical Spine
CLINICAL INDICATION:
Previous fall. Progressive neurology. Old fracture. History of myeloma
TECHNIQUE
Axial sections were obtained with reformatted images
FINDINGS:
There is an old fracture of the base of the odontoid peg. The peg is displaced significantly posteriorly and abuts the anterior arch of the atlas. The anteroinferior aspect of the displaced peg abuts the posterior aspect of the C2 vertebral body segment There is also posterior subluxation of the right C1 lateral mass on the right C2 lateral mass. Degenerative changes and osteophyte formation is demonstrated at the left C1/C2 lateral mass articulation.
Degenerative changes are seen in the cervical joints being particularly prominent on the right side at the C3-4 and C4-5 levels. Alignment of the rest of the cervical spine is normal
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What all that means, as far as I can tell with the assistance of my Unofficial Medical Adviser, is that it's a bit of a miracle I went as long as I did without serious consequences, and the sooner we get the scaffolding in there the better.
It's still unclear whether we're dealing with an old fracture or a new one, or both. But my UMA tells me that because of the way bone heals and re-forms, it's very hard to date these things. So perhaps the question is unanswerable and only of historic interest.
Now off for an early(ish) night. Giot to be at my brightest and best for Mr.D later this morning!
Second consultation with neurosurgeon Mr.V yesterday morning. A good start: he's happy with the soft collar and says I can forget the rigid one. Huge relief! After all those scans and x-rays he says the main thing is to avoid my head dropping forwards, and the soft one des that well enough.
We're no longer talking about a new upper cervical fracture and an old one. It's just the old one now. More about that, I hope, in the scan reports which should be with me by early next week.
The plan now seems to be to go for inserting some metalwork into my neck. Mr.V won't do that himself, being more of a brain surgeon, so he's passing me on to a colleague at Brentwood Nuffield Hospital who's more of a Meccano expert. So that's yet another consultation before we get to the action. On Monday morning I'll 'phone AXA and see what they have to say about it...
That's the way Meccano used to look when I were a lad back in the '50s...
The question I should have asked but didn't is "How far is this related to my myeloma?" or perhaps "If I didn't have myeloma would this still be happening?" But I don't suppose he'd have given a straight answer anyway.
Outside the hospital afterwards I made a test call on my Careline GPS alarm, as advised by their technical people. I've had reason to suppose over the last couple of weeks that it's not been working properly. It reported that I was still at home. We repeated the test a bit later outside a nearby Costa (for lunch) and got the same wrong result. So they're sending me what will be my second replacement alarm in just a couple of months. That's not too impressive.
Once home, I was hit by a fatigue attack as bad as I've had since I came off len & dex. Collapsed in my chair downstairs and slept. And slept. And slept...
Yesterday morning - bright and sunny but still with a bit of a nip in the air - took the scooter down the garden to the big pond for a while. All very pleasant. Then went back inside and, in the words of the late and great Roger Zelazny, "the fit hit the Shan". It started with an innocent-sounding call from the people we've booked to fit a hoist to my car and it ended, after many more deeply frustrating 'phone calls, with us bringing some helpful neighbours round to heave the scooter (minus seat and batteries) into the back of the car so that we could take some photos to prove that yes, it really does fit:
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All credit to Sue, who did all the work on the phone and more than her fair share of the heaving.
Nothing new on the myeloma front, just waiting for the next neuro-appointments on Saturday and Tuesday. Which reminds me that I haven't posted the neurosurgeon's clinic letter yet. Here it is:
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Diagnoses:
Recent C2 fracture with slowly progressive myelopathy
Previous myeloma - recently stopped lenolidamide and
dexamethasone
Old C2 fracture
DH: Cotrimoxazole, acyclovir, rivaroxaban, omeprazole,
amitriptyline
AH: NKDA
Operations: Umbilical hernia repair, R Achilles repair
I assessed this 73-year-old right-handed gentleman who
was accompanied by his wife. His myeloma has been in remission for two years.
He presented to Broomfield on 12th January with some left leg weakness. He had
brain MRI and he was discharged with stroke refuted. When he returned home, he
had a fall in the kitchen when bending for a tablet and needed help to get up
he has had a further fall in the shower, needing help to get up and a partial
fall onto the bed. His weakness predates these three falls but on closer
scrutiny, he had a fall in the summer of 2021 whilst playing bowls, when he
landed flat on his face. Since then, he has noticed a slow progressive
worsening of walking. Until January, he was able to walk outside with a stick
slowly or with a walker. He now uses a wheelchair outside but can mobilise with
a stick or two sticks at home. He has a stair lift. His right leg is the best
limb. He can dress himself but cannot fasten buttons or laces. He feeds with
his right hand and his left hand cannot really manage cutlery. He has urinary
urgency. He has no real neck pain but on certain motions, feels a minor twinge
intermittently. L'Hermitte's is negative. He reports altered temperature sensation
in the right hand.
He did not have cervical tenderness. He had restricted
rotation but reasonable flexion and extension. Shoulder power was grade 5,
right arm normal, left elbow and wrist and grip all grade 4. Left arm reflexes
were brisk. Hoffman's was negative. He had normal sensation in the upper limbs
including proprioception in the index finger. He had normal power in the legs
but walked slowly. Knee reflexes were brisk ankle reflexes absent, plantars
flexor. Proprioception was preserved in the big toes.
MRI shows an old C2 fracture with posterior
displacement of the odontoid process with some signal change in the spinal cord.
I have arranged a hard collar, CT of the cervical
spine and dynamic x-rays. I have suggested we are working towards a posterior
stabilisation, perhaps with decompression in order to stabilise his neurology
and allow some improvement.
Yours sincerely,
Checked electronically but not signed to avoid delay
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Yesterday was a beautiful day so we took the scooter down the garden to soak up the sun and inspect the job done by the pond professionals we had in the morning to do the yearly (approximately) clean-up.
Here's the small pond:
and the big one - still being topped up, hence the hose:
Me getting some sunshine:
and Belle failing to grasp that "beep beep" means "Get out of my way!"
The mystery Royal Mail package turned out to be my regular order of coffee beans and my subscription pack of Optivision pills. Neither normally involves any delivery problems.
Went out on the scooter for the first time, accompanied by the watchful Sue on foot. First lesson learned: crossing main roads with limited ability to turn my head is not easy... Otherwise, all good.
Clare the physio from Springfield 'phoned just as we were leaving for that modest expedition (just up to the Four Wantz and back). Advice is to stay with the soft collar until we see the neurosurgeon on Saturday and see what ideas he has then.
