] questions. It covers my recent operation, what led to it, and likely and possible future.
So, history and background.
I had often wondered why I ended riding big heavy bikes. I'm not an outdoorsy type person, don't like getting wet and cold, and I am a wimpey scaredy cat. Crucially, I have never considered that I had a particularly good sense of balance.
However, I did say that I wouldn't stop biking until told to by a doctor.
What's changed?
Two things seem to have led to the current situation:
1. As i wrote elsewhere, on Friday Aug. 23rd 2002, at about 13.10, while I was crossing a mini-roundabout at 15mph, someone thought I was a gap in traffic. I'd just stood up at the point of impact, and the next memory I have is of being flat on my back in the road, unable to move. Luckily, I'd had a soft landing - I'd landed on my head . . . I suffered concussion, a strained neck and various bruises. My bike was written-off.
I had x-rays, physio, etc., but my neck was never the same. If going out to somewhere where i would be looking a lot from side to side (out to dinner, for example) or - conversely- where i would be sat still (cinema, theatre), then I would take a couple of paracetamol.
2. December 2017. Chest infection. Lots of coughing. My sense of balance went AWOL - i would be bouncing off the walls walking along corridors.
This gradually improved, but I'd had enough by June so saw the GP. Labyrinthitis, it will get better with time.
It did. Easter 2018 I bought a bicycle. Then another chest infection. It got worse again. After three events (one fall, two close), GP again. GP says no bikes. I'd already worked that one out! Sent to see an ENT consultant. Sent for an MRI and balance tests.
Then, after the MRI, the phone call you don't want "Just let you know, the radiologist has noticed an abnormality in your brain, Southampton neurology will be contacting you".
Two weeks of "fuck, it's cancer", then some relief when an 'urgent' appointment didn't appear.
The balance tests showed that the inner ear mechanism is fine - but my eyes wobble - nystagmus.
Consultant appointment Jan 2019.
I expected to be told that my balance was buggered, so get used to it.
No, i have a Chiari Type 1 malformation. Basically, the cerebellum (base of skull at the back) is partially squidged down the hole (hope you're keeping up with the medical jargon) where the spinal cord exits south.
Also, I have retroflexed odontoid process (part of the C2 vertebra) and basilar invagination of the clivus. In other words, part of my spine and base of skull are crimping the brainstem. This meant by symptoms were not typical Chiari.
Cerebellum is the '3 bits of broccoli'
Odontoid proces (peg) is the boney finger
Clivus (base of skull) is the bright white area
Google an MRI to see the crimp.
Subsequent googlefest shows that things that I had accepted as 'doesn't everyone get this?' and never wondered about were Chiari effect. The funniest is the laugh/cough/sneeze headache! Skull then karate chops cerebellum, which then gives a few seconds of headache.
Typical other effects are nystagmus, headaches, tinnitus, eyes affected by bright light (hmmm first glasses were tinted, optician said that my eyes needed it) ...
Let's swiftly cover through until April 2020:
- Full spine MRI, rule out syrnyx (sp)
- Another neuro consultant, to rule out intracranial hypotension.
- MRI with contrast
- CT
- X-rays
- Dynamic MRI, me moving my head slowly, from fully back to forwards
Then it gets unpleasant...
December 2019, consultant #1 again. Dynamic shows how badly the brainstem is being affected. I am already having changes to the way the nerves in my legs work. Brainstem also does other boring stuff like 'breathing'.
Jan 2020, consultant #3. It's highly likely that, as well as Chiari 'decompression' (removing a section of skull) that the peg and clivus will need to be 'machined' to create room. This is done through the nasal cavity, after operation 1 to decompress but also to fuse skull to spine.
April 2020, consultant #4. He will do operation 1.
Which was Monday.
Discharged Tuesday, which was a surprise.
Why?
All these problems are congenital. Consultant #3 commented that most of them exhibit by the time their 'owners' are in their teens - so I should think myself lucky that I'd had an extra 45 years.
Of course, without MRIs it couldn't accurately be diagnosed before autopsy! Frighteningly, the endoscopic endonasal skull base surgery is a relatively new development. Previously they would split the jaw and cut through the palette.
What was done? Two things done:
1. Decompression, by removal of an arc of skull to enlarge the hole at the base. 2.5 x 2.5 cm. Also removal of the back of C1 vertebra.
2. Fusion of the craniovertebral junction, that's fixing skull to C1 and C2 with titanium vmbolts and rods. The CVJ allows you to nod and shake your head. I will have lost most of that movement.
Recovery includes 3 - 6 months in a rigid collar.
Review in 3 months to see whether this has also created enough room for the brainstem.
Long-term outlook is having to relearn to drive.
Ideally, I'd like no more nystagmus and an end to headaches.
However, if operation 1 hasn't created enough space for the brainstem, I'll be on the waiting list again.
Re the CVJ, more info here:
At this point you may be wondering what else was removed on Monday
But no. Imagine ....
The seat is your skull, the floor is the top of your main spine 'c3' vertebra. The mechanism which allows your skull to move about is the craniovertebral junction.
Skulls tips for and back on C1, C2 has the peg sticking up, an axle that allows C1 and skull to rotate.
https://www.spineuniverse.com/amp/47990
Scroll down for the diagram - that's where my new titanium bolts and rods have been installed, to make the joint rigid. This is preparatory for operation 2, potential removal of the peg. But hopefully not.
Luckily, they were out of stock of the purple anodised bolts.
Hope all continues to go in the right direction for you.
fingers crossed, hope it all works out in the end
