This gets the ball rolling to get life back on track ... it's also a clinical view of the past 13 months, stripped of the emotional rants, life questions and pleas for more time by the sea ...
Thursday, May 13, 2010
The clinical summary ...
This gets the ball rolling to get life back on track ... it's also a clinical view of the past 13 months, stripped of the emotional rants, life questions and pleas for more time by the sea ...
Friday, May 7, 2010
A fireside Guinness, with a 'stable' tissue mass
'Stable'. Again.
Not me, it.
It's not getting smaller, but it's not getting noticeably bigger.
Neurologist is writing his assessment to VicRoads - which kickstarts the process of lobbying to get my licence back. The small 'vague out' TLE episodes don't bother him - and I've been driving 19 years with about a half dozen of them a day and a perfect driving record. He's still concerned about me forgetting the Tegretol or by some other manner getting a 'more significant' seizure behind the wheel. But it's been a year. And I haven't fallen down again.
Time to get life back on track.
Neuro is still thinking some sort of chronic inflammation at the root of it all. But seems to have moved out of diagnosis mode and into monitor/manage mode. "We'll see in another three months, maybe another MRI in a year, or perhaps 6 months."
To me there's not enough being asked or said of 1991 - he's drawn the direct link between 19 years of epilepsy and this mass of tissue. SO, what else might have happened in 6 months of Asian wanderings (other than the tapeworm theory and various other parasites since ruled out), what about the original Lariam hypothesis?
Lots of medium term/longer term questions like, if it's taken 19 years to get to about 20 mm, that's potentially another 10mm by my 50th, and that's surely a size to seriously mess with functioning ... they all remain unanswered. There is no diagnosis, and I've got to live with that for probably quite a bit longer.
Anyway - it's Friday night. A couple of weeks of serious stress are starting to subside (I had steeled myself for the 'getting bigger' result), I don't have to go back to hospital until August ... and a fireside Guinness with some smiley company awaits.
Wouldn't be a true B Grade drama if we didn't drag it out for another year or two would it?
Not me, it.
It's not getting smaller, but it's not getting noticeably bigger.
Neurologist is writing his assessment to VicRoads - which kickstarts the process of lobbying to get my licence back. The small 'vague out' TLE episodes don't bother him - and I've been driving 19 years with about a half dozen of them a day and a perfect driving record. He's still concerned about me forgetting the Tegretol or by some other manner getting a 'more significant' seizure behind the wheel. But it's been a year. And I haven't fallen down again.
Time to get life back on track.
Neuro is still thinking some sort of chronic inflammation at the root of it all. But seems to have moved out of diagnosis mode and into monitor/manage mode. "We'll see in another three months, maybe another MRI in a year, or perhaps 6 months."
To me there's not enough being asked or said of 1991 - he's drawn the direct link between 19 years of epilepsy and this mass of tissue. SO, what else might have happened in 6 months of Asian wanderings (other than the tapeworm theory and various other parasites since ruled out), what about the original Lariam hypothesis?
Lots of medium term/longer term questions like, if it's taken 19 years to get to about 20 mm, that's potentially another 10mm by my 50th, and that's surely a size to seriously mess with functioning ... they all remain unanswered. There is no diagnosis, and I've got to live with that for probably quite a bit longer.
Anyway - it's Friday night. A couple of weeks of serious stress are starting to subside (I had steeled myself for the 'getting bigger' result), I don't have to go back to hospital until August ... and a fireside Guinness with some smiley company awaits.
Wouldn't be a true B Grade drama if we didn't drag it out for another year or two would it?
Monday, May 3, 2010
Waiting
Waiting
Waiting
There's something Machiavellian about an 18 day wait to receive the results of the eight brain scans taken in the MRI session last month.
Something very daunting about those machines - like sticking your head in a big bread maker/microwave hybrid. Then getting your head strapped and locked in place by two or three mask things - like a hockey goal keeper held down by his mask. But, once inside and perhaps because of or despite the cacophony of bizarre noises, I again fell asleep at times through the 40 minutes of scanning - maybe a defence mechanism.
But the hurt for me this time was seeing the family of a two year-old trying to go through the same thing - a two year-old not long for this world by the look in the eyes. Inconsolable very sick child in the big bread maker, strapped down by the head. It must be an evil machine for children to cope with. Mother of child hysterical in the corridor, the dad doing his best for both. Witnessing the paediatrics is the heart wrenching part of hospital visits. Kids and brain tumours - just isn't fair.
I find out if the mass is getting smaller, 'stable' or growing on Friday.
The great ocean walk is calling me whatever the outcome. Alcohol didn't help last Tuesday week (ouch), so a few days ambling alongside the Southern Ocean might, and I might have a few obscenities to scream from a cliff top. (She's a good listener).
Got to meet John Francis at the Healthy Parks Healthy People congress. Gave me great spark for taking on another stroll soon. Gotta walk.
http://www.theartofwalking.com.au/welcome/
Waiting
Waiting
There's something Machiavellian about an 18 day wait to receive the results of the eight brain scans taken in the MRI session last month.
Something very daunting about those machines - like sticking your head in a big bread maker/microwave hybrid. Then getting your head strapped and locked in place by two or three mask things - like a hockey goal keeper held down by his mask. But, once inside and perhaps because of or despite the cacophony of bizarre noises, I again fell asleep at times through the 40 minutes of scanning - maybe a defence mechanism.
But the hurt for me this time was seeing the family of a two year-old trying to go through the same thing - a two year-old not long for this world by the look in the eyes. Inconsolable very sick child in the big bread maker, strapped down by the head. It must be an evil machine for children to cope with. Mother of child hysterical in the corridor, the dad doing his best for both. Witnessing the paediatrics is the heart wrenching part of hospital visits. Kids and brain tumours - just isn't fair.
I find out if the mass is getting smaller, 'stable' or growing on Friday.
The great ocean walk is calling me whatever the outcome. Alcohol didn't help last Tuesday week (ouch), so a few days ambling alongside the Southern Ocean might, and I might have a few obscenities to scream from a cliff top. (She's a good listener).
Got to meet John Francis at the Healthy Parks Healthy People congress. Gave me great spark for taking on another stroll soon. Gotta walk.
http://www.theartofwalking.com.au/welcome/
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