Arnie Pye
Senior Member (Voting Rights)
When I wrote my introductory post I included this paragraph :
I still haven't been diagnosed with ME, but I do know I have several problems in the SE (something else) category.
One of the most serious conditions I have is hydrocephalus. It was first discovered by accident about 5 years ago following a CT scan of my head for something unrelated to hydrocephalus. The CT scan was followed up by two MRI scans a few months apart (at the behest of a neurologist I was referred to), and it was determined that the big hole inside my brain is not getting bigger and my condition was deemed to be stable. So, no further testing was done, and I was offered no treatment. The diagnosis was "communicating hydrocephalus" with the possibility being suggested that I had had this condition for a very long time, probably since childhood or birth and that my brain had adapted to it.
But now that I am getting older my brain is losing its ability to adapt and cope.
My balance is poor. I would never pass a sobriety test even though I don't drink. I can't walk heel-to-toe, I can't stay upright on one leg, and if I close my eyes while standing I fall over. However, in normal walking I can usually walk reasonably well, although I have a tendency to stagger and bump into things which is getting worse. I found that keeping my B12 levels very high and eating gluten free has reduced the problem to some extent, but the deterioration is still happening.
My cognitive function is declining. My spoken vocabulary and word-finding are getting worse all the time, although my written English is still okay. I have a spelling add-on/dictionary installed in my browser that helps enormously.
I haven't become incontinent (yet), although apparently this is something for me to look forward to. Oh joy.
Earlier this year I decided that I'd been fobbed off long enough and I wanted to be referred to a neurologist again. With some pushing, I persuaded the man to refer me for further testing, and I was sent an appointment at a different hospital.
When I went for the appointment at the new hospital I was disappointed to be seen by a doctor who seemed to believe I was exaggerating or lying. But he did order a fresh set of MRI scans.
When I went for the follow up appointment earlier this month I was surprised to be seen by a consultant. He did more walking tests and obviously noticed I stumbled over my words fairly frequently. He gave me a tentative diagnosis of NPH - normal pressure hydrocephalus. Despite the name, people can have NPH with increased pressure in the brain. (Don't ask me why it has such a stupid name if pressure might not be normal!)
Anyway, I'm going to be given an in-patient appointment in hospital where I'll be given memory tests, cognitive function tests, more balance testing, a lumbar puncture with some CSF drained off. There will be an attempt to measure the pressure of my CSF in my spine before CSF is drained off, then again when pressure is reduced. Then after a certain number of hours (or a day or two?) I will have the balance, memory and cognitive tests repeated to see if there is any improvement.
If there is improvement then I may be given a VP shunt to drain excess CSF and reduce the pressure inside my head.
If there is no improvement then they will follow up by drilling a hole in my head and removing some CSF that way. Then all the tests will be repeated again.
If there is some improvement then I may be given a VP shunt as above.
If there is still no improvement then basically I will be discharged and will most likely be told I'm developing dementia and I'll be left to rot. More joy.
There are still a lot of ifs, buts and maybes, but I don't feel hopeful about the future. I'm a bit worried about the cognitive function tests and how they are interpreted. They (the doctors) don't know what I was like intellectually 20 years ago so they can't tell whether my cognitive function has reduced. (I know it has.) If they are just comparing me against some hypothetical average person they may decide that I have no loss or very little loss of cognitive function. I was a bright cookie in my youth, with an IQ over 140. If they decide my cognitive function is fine and they can delay treating me until my cognitive function has dropped below average I'll probably end up never getting any kind of meaningful treatment until the person I am has completely vanished. I already feel as if my personality and sense of humour have substantially disappeared.
I still haven't been diagnosed with ME, but I do know I have several problems in the SE (something else) category.
One of the most serious conditions I have is hydrocephalus. It was first discovered by accident about 5 years ago following a CT scan of my head for something unrelated to hydrocephalus. The CT scan was followed up by two MRI scans a few months apart (at the behest of a neurologist I was referred to), and it was determined that the big hole inside my brain is not getting bigger and my condition was deemed to be stable. So, no further testing was done, and I was offered no treatment. The diagnosis was "communicating hydrocephalus" with the possibility being suggested that I had had this condition for a very long time, probably since childhood or birth and that my brain had adapted to it.
But now that I am getting older my brain is losing its ability to adapt and cope.
My balance is poor. I would never pass a sobriety test even though I don't drink. I can't walk heel-to-toe, I can't stay upright on one leg, and if I close my eyes while standing I fall over. However, in normal walking I can usually walk reasonably well, although I have a tendency to stagger and bump into things which is getting worse. I found that keeping my B12 levels very high and eating gluten free has reduced the problem to some extent, but the deterioration is still happening.
My cognitive function is declining. My spoken vocabulary and word-finding are getting worse all the time, although my written English is still okay. I have a spelling add-on/dictionary installed in my browser that helps enormously.
I haven't become incontinent (yet), although apparently this is something for me to look forward to. Oh joy.
Earlier this year I decided that I'd been fobbed off long enough and I wanted to be referred to a neurologist again. With some pushing, I persuaded the man to refer me for further testing, and I was sent an appointment at a different hospital.
When I went for the appointment at the new hospital I was disappointed to be seen by a doctor who seemed to believe I was exaggerating or lying. But he did order a fresh set of MRI scans.
When I went for the follow up appointment earlier this month I was surprised to be seen by a consultant. He did more walking tests and obviously noticed I stumbled over my words fairly frequently. He gave me a tentative diagnosis of NPH - normal pressure hydrocephalus. Despite the name, people can have NPH with increased pressure in the brain. (Don't ask me why it has such a stupid name if pressure might not be normal!)
Anyway, I'm going to be given an in-patient appointment in hospital where I'll be given memory tests, cognitive function tests, more balance testing, a lumbar puncture with some CSF drained off. There will be an attempt to measure the pressure of my CSF in my spine before CSF is drained off, then again when pressure is reduced. Then after a certain number of hours (or a day or two?) I will have the balance, memory and cognitive tests repeated to see if there is any improvement.
If there is improvement then I may be given a VP shunt to drain excess CSF and reduce the pressure inside my head.
If there is no improvement then they will follow up by drilling a hole in my head and removing some CSF that way. Then all the tests will be repeated again.
If there is some improvement then I may be given a VP shunt as above.
If there is still no improvement then basically I will be discharged and will most likely be told I'm developing dementia and I'll be left to rot. More joy.
There are still a lot of ifs, buts and maybes, but I don't feel hopeful about the future. I'm a bit worried about the cognitive function tests and how they are interpreted. They (the doctors) don't know what I was like intellectually 20 years ago so they can't tell whether my cognitive function has reduced. (I know it has.) If they are just comparing me against some hypothetical average person they may decide that I have no loss or very little loss of cognitive function. I was a bright cookie in my youth, with an IQ over 140. If they decide my cognitive function is fine and they can delay treating me until my cognitive function has dropped below average I'll probably end up never getting any kind of meaningful treatment until the person I am has completely vanished. I already feel as if my personality and sense of humour have substantially disappeared.
. I doubt they would know the precise levels of functioning, though they may understand the level of reasoning required.
