After months of appeals, letters, doctors reports and form filling, Eddie finally got the news that he had been awarded DLA.
For once...someone had recognised his struggle. It isnt the award we were told to expect, but it is something.
I think its going to be hard for Eddie to get used to saying he has a 'Disability' and adapting his life round his disability is going to be hard to do.
As his symptoms get worse almost daily, I can see us having to contact DWP alot in the coming months.
At least he can look forward to spending his backdate!
Monday 26 October 2009
I asked the questions they didnt answer
I got fed up of not knowing and emailed the consultants secretary on Eddies behalf for some answers.
He wrote to Eddie and confirmed that what I had thought Eddie has was correct, Hydrocephalus due to stenosis of the aqueduct of sylvius and that it was congenital.
He said that Eddies symptoms were not typical of that of hydrocephalus and because of this and the fact his ICP was normal, surgery was not an option, and instead he was being referred to a neurologist. He did not know why his symptoms have worsened.
It made me angry, if his symptoms are not typical of that of Hydrocephalus, what are they? They have done one MRI scan, do they know if the passage had thinned further? And if his symptoms are not typical of Hydrocephalus then why are those symptoms directly related to his condition on thousands of websites and doctor research sites?
Could the passage thin completely? According to many doctors reports and (it shivvers my soul to say it...) pathologist reports...yes, and if it thins too much or blocks completely, my daughter is going to loose her Daddy.
Why wont they do something???
He wrote to Eddie and confirmed that what I had thought Eddie has was correct, Hydrocephalus due to stenosis of the aqueduct of sylvius and that it was congenital.
He said that Eddies symptoms were not typical of that of hydrocephalus and because of this and the fact his ICP was normal, surgery was not an option, and instead he was being referred to a neurologist. He did not know why his symptoms have worsened.
It made me angry, if his symptoms are not typical of that of Hydrocephalus, what are they? They have done one MRI scan, do they know if the passage had thinned further? And if his symptoms are not typical of Hydrocephalus then why are those symptoms directly related to his condition on thousands of websites and doctor research sites?
Could the passage thin completely? According to many doctors reports and (it shivvers my soul to say it...) pathologist reports...yes, and if it thins too much or blocks completely, my daughter is going to loose her Daddy.
Why wont they do something???
Symptoms...the list
So it started a few, and now is a lot more comprehensive...and they are growing by day
Collpasing with strong emotions, falling asleep uncontrollably, constantly tired, sleep paralysis, vivid dreams, severe headaches, feeling of pressure behind his eyes, pain in his eyes, numbness in his jaws, blurred vision, double vision, flashes of no vision, misjudgement with heights, weights and distances, hearing voices, seeing things, spells of agression which cannot be remembered, short term memory loss, difficulty getting out of chair, difficulty taking first step, pain in joints and legs, loss of strength all over body, loss of bladder and bowel control, numbness in hands and arms.
He can best be described as having symptoms of cataplexy and dementia.
Collpasing with strong emotions, falling asleep uncontrollably, constantly tired, sleep paralysis, vivid dreams, severe headaches, feeling of pressure behind his eyes, pain in his eyes, numbness in his jaws, blurred vision, double vision, flashes of no vision, misjudgement with heights, weights and distances, hearing voices, seeing things, spells of agression which cannot be remembered, short term memory loss, difficulty getting out of chair, difficulty taking first step, pain in joints and legs, loss of strength all over body, loss of bladder and bowel control, numbness in hands and arms.
He can best be described as having symptoms of cataplexy and dementia.
Finally....Answers? surely???
The neurosurgeon appointment came up and in the brief time in the room the consultant explained that he had narrowing of one of the passages in his brain, and that he wanted to send him for ICP monitoring. He was diagnosed with Hydrocephalus.
The ICP monitoring came back normal, he did not have any episodes during the hours that they monitored him and he never left the bed. He also said that after the procedure which was performed under GA that he felt his pain had deminished a bit and that his symptoms had relieved somewhat.
So home we went, no conversations with any consultants about what was happening next.
On getting home, the area where the bolt was had swollen and on returning to the ward we finally got to see an actual consultant. He did not speak to Eddie directly, poke his head and said to his understudies hudled around him that it was fine, to come back to the hospital to have the stiches removed and a CT scan done...and he was off.
A few days later we drove the 50 miles to return to have the stiches removed after cancelling the nurses appointment at the doctors on our street to have this done, knowing he needed a CT anyways. After this was done, we were told no CT was required. We spoke to an understudy in the hall way about possible shunt options, which he didnt seem to know about and ended up leaving with no answers to any of the questions we had....wasted journey.
On getting home I started to google, contacted neurosurgeons around the world, looked up conditions and tried to educate myself in what was happening. I was confused, other people with the same symptoms and problems as Eddie were getting surgery, shunts and returning to some sort of normality.
What was going on...?
The ICP monitoring came back normal, he did not have any episodes during the hours that they monitored him and he never left the bed. He also said that after the procedure which was performed under GA that he felt his pain had deminished a bit and that his symptoms had relieved somewhat.
So home we went, no conversations with any consultants about what was happening next.
On getting home, the area where the bolt was had swollen and on returning to the ward we finally got to see an actual consultant. He did not speak to Eddie directly, poke his head and said to his understudies hudled around him that it was fine, to come back to the hospital to have the stiches removed and a CT scan done...and he was off.
A few days later we drove the 50 miles to return to have the stiches removed after cancelling the nurses appointment at the doctors on our street to have this done, knowing he needed a CT anyways. After this was done, we were told no CT was required. We spoke to an understudy in the hall way about possible shunt options, which he didnt seem to know about and ended up leaving with no answers to any of the questions we had....wasted journey.
On getting home I started to google, contacted neurosurgeons around the world, looked up conditions and tried to educate myself in what was happening. I was confused, other people with the same symptoms and problems as Eddie were getting surgery, shunts and returning to some sort of normality.
What was going on...?
When it all began
I can remember the start of it all quite clearly. Eddie had been complaining of being really tired all the time and decided to take some time off work at the beginning of 2008 from his job in security and door stewarding.
Then one day after him catching our kitten in the act of weeing on a pile of washing...damn cat...he came in and complained of a feeling that he was 'losing control' we talked about it more and he explained that when he felt angry with the kitten, he felt like he was going to collapse.
From then on more symptoms popped up, he tried going back to work but he was just constantly tired and the episodes of being close to collapsing became more frequent. He had always suffered headaches, but these got worse.
As the episodes developed into actual collapsing, we decided it was time to go to the doctors. Initially the doctor said he didnt have enough oxygen in his blood and there was nothing he could do. We moved, and the new doctor was slightly more concerned.
He referred Eddie to a neurologist to discuss the 'episodes' which by the time this appointment had came around were kept company by several other symptoms such as falling asleep uncontrolably, collapsing when laughing, blurred and double vision, slurred speech amoung some others. The neurologist diagnosed Narcolpesy & Cataplexy, but explained that its unusual for these conditions to come on suddenly and sent him for an MRI.
The day he got his results was a scary one, he went to the GP complaining of worsening of his headaches and the doctor told him the results of the scan which showed a 'cyst' in the brain. He was referred back to the neurologist for the results, who explained it wasnt a cyst, but infact a build up of fluid and he was then referred onto a neurosurgeon.
The waiting was killing him, not knowing what was wrong or why it was happening. Having something wrong inside your head and worried what the outcome could be. I could feel how it was affecting him. This strong man, always working hard was reduced to sleeping all the time, in pain, being confused and not even able to laugh or feel normal emotions because it made him collapse.
Just had to wait on the neurosurgeon appointment...
Then one day after him catching our kitten in the act of weeing on a pile of washing...damn cat...he came in and complained of a feeling that he was 'losing control' we talked about it more and he explained that when he felt angry with the kitten, he felt like he was going to collapse.
From then on more symptoms popped up, he tried going back to work but he was just constantly tired and the episodes of being close to collapsing became more frequent. He had always suffered headaches, but these got worse.
As the episodes developed into actual collapsing, we decided it was time to go to the doctors. Initially the doctor said he didnt have enough oxygen in his blood and there was nothing he could do. We moved, and the new doctor was slightly more concerned.
He referred Eddie to a neurologist to discuss the 'episodes' which by the time this appointment had came around were kept company by several other symptoms such as falling asleep uncontrolably, collapsing when laughing, blurred and double vision, slurred speech amoung some others. The neurologist diagnosed Narcolpesy & Cataplexy, but explained that its unusual for these conditions to come on suddenly and sent him for an MRI.
The day he got his results was a scary one, he went to the GP complaining of worsening of his headaches and the doctor told him the results of the scan which showed a 'cyst' in the brain. He was referred back to the neurologist for the results, who explained it wasnt a cyst, but infact a build up of fluid and he was then referred onto a neurosurgeon.
The waiting was killing him, not knowing what was wrong or why it was happening. Having something wrong inside your head and worried what the outcome could be. I could feel how it was affecting him. This strong man, always working hard was reduced to sleeping all the time, in pain, being confused and not even able to laugh or feel normal emotions because it made him collapse.
Just had to wait on the neurosurgeon appointment...
Lets catch up...
Hello blogging world.
My name is Sha, and I have created this blog for friends, family and any nutty fans to keep upto date with the world of Eddie & co.
For those of you who dont know, Eddie is 27 years old and has Hydrocephalus due to congenital stenosis of the aqueduct of sylvius. He was diagnosed with hydrocephalus in Dec 08. He also has Narcolpesy, Cataplexy and a tendancy to flirt with anyone remotely good looking...lol
He lives in a Farmhouse in Scotland with me (Sha), his girlfriend and longstanding moan and our Daughter Brodie Maia who is currently 10 months old and we are expecting baby number two on 13th March 2010!
This blog will mainly be about Eddie and his condition, but will also include whats going on generally in our world :)
My name is Sha, and I have created this blog for friends, family and any nutty fans to keep upto date with the world of Eddie & co.
For those of you who dont know, Eddie is 27 years old and has Hydrocephalus due to congenital stenosis of the aqueduct of sylvius. He was diagnosed with hydrocephalus in Dec 08. He also has Narcolpesy, Cataplexy and a tendancy to flirt with anyone remotely good looking...lol
He lives in a Farmhouse in Scotland with me (Sha), his girlfriend and longstanding moan and our Daughter Brodie Maia who is currently 10 months old and we are expecting baby number two on 13th March 2010!
This blog will mainly be about Eddie and his condition, but will also include whats going on generally in our world :)
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