Friday, 30 April 2010

30th April

I knew from the second I woke up that today would be rubbish. My head was more painful than it normally is in the morning. I stood up and felt very very dizzy and sick. When this happens it's like my eyes are focused on one spot and the room is spinning and pulsing. This doesn't go away like it would if you were dizzy normally. It can last for ages, however I suffer from it so often I have taught myself to walk almost normally whilst it is happening. Not today however.
I was also really confused. I was convinced it was Saturday, and thought it was the evening. Realised it was Friday but kept forgetting. Confusen stayed for about 2 hours.
Then I've been in bed ever since, pretty much unable to stand and feeling very sore. It's 5.40pm and I've been awake for about 10 hours. I've taken about 20 painkillers over the course of this time and they are not working as well as I would like.
Fingers crossed tomorrow is a good day, I seem to be having more and more bad days as the weeks pass.

Thursday, 29 April 2010

Do bad things come in threes?

Do bad things come in threes?
If they do then I am not having my operation for a while! 2 people in Richards extended family have passed away in the past week. I feel that's a bad omen, and I really am not too fussed about the delay in my operation.

Anyway, moving rapidly on. Had a very lazy day today, I didn't fall asleep till just gone 6 and then slept till just before 11. The lazed around till about 1 as I had a massive headache and couldn't even stand up without feeling very unwell.
Went to see Richards mummy as it is her birthday.
Then Richard took me for KFC for dinner, he really knows how to treat me lol.
Then spent a lazy evening, bought my mummy fish and chips for dinner.
All in all twas an oky day.
Headache score of about 7, which is just above average so hopefully tonight will be a night full of about 5 hours sleep!

Chiari Poem

I found this poem by a guy called Dr. Oro. It describes chiari very well.

Another headache
The third today
We all have them
So they say

I’m getting dizzy
My vision blurred
Your getting older
Don’t be absurd

I’m staying home
Too tired to go
Go see your doctor
She should know

Too many symptoms
You must be stressed
Take medication
And get some rest

I cannot think well
Can’t find the words
My memory slipping
My speech gets slurred

We’ll get a scan
Since you insist
If we find nothing
Please don’t persist

Don’t make me laugh
Don’t make me cry
It hurts to strain
I don’t know why

Your scan is fine
By report today
Incidental Chiari
So they say

What do you mean
By a doctor
I have not seen

It is anxiety
That makes you so
The world is stressful
I think you know

I pulled away
Gave up, or such
Until the pressure
Became too much

I waded through
The Internet
Fearful of losing
What I had left

It took some time
To come to know
My brain is hanging
Down too low

With every beat
The fluid flows
Deep in the brain
To the opening below

The rush of fluid
Seeking release
Finds cerebellum
Which makes it cease

The pressure spikes
My head explodes
It makes such sense
Now that I know

Working together
We’ll find a way
To make it better
So I say


Just a quick one to say that last night for the first time in ages I managed 4 hours of uninterupted sleep!! It doesn't matter that 4 hours is all I had all night.
Spending the day with Richard today, he is off work. Got a feeling today is going to be a good day =D

Wednesday, 28 April 2010

28th April

Had a rough night, couldn't get my temperature correct. Tossing and turning till about 5am then slept on and off till 8, when I had to get ready for a GP appointment. I knew it was going to be a rubbish day, my tolerance for pain is much much lower when I am tired.
Went to the GP, my mum drove. My GP is so nice, I have been seeing him regularly about my hand and my low B12 levels since about October last year. He is the kind of doctor who doesn't just want to get you in, give you medicine, then send you out. He genuinely seems to care, always being concerned about how your medical condition is affecting you on a more personal level. I always know I will have a long wait when I go and see him, but it really is worth it once you get to see him. Also my mum rather fancies him =]
I hadn't seen him since being told about my CM, so spent about 10mins (the appointments are only 10mins long) talking him through it, as he had only heard about it, never had a patient suffering from it.
Then he asked me how I was feeling in general, how I was coping ect. Then he gave me a month long sick note, and told me, unless I wanted anything even just a chat, that I could just phone and get another sick note, as he knew it was a hassel getting someone to drive me.
This means in total, by the time the sick note I was given today runs out, I would have had 2 months off work. Also the after week my sick note runs out the school is on holiday, so at minimum I will have had 9 weeks off work =\ I feel really out of the loop!
Spent the rest of the morning and afternoon in bed having lots of cuddles with darcey cat and taking photos of her being cute.

The pressure in my neck was really bad, nothing I could do would settle it.
I volunteer once a week at my local youth club, so went there at 6.30. Tonight we were iceing and decorating cakes, was a nice evening.
Went home watched some telly and had lots of cuddles from Alister, the son of a very good friend of mine.

They have now gone and it's getting late. I've taken all my tablets, and still the pain in the base of my skull and neck is not subsiding. It feels like my neck is not strong enough to support the weight of my head. So I guess all I've got to look forward to is another night of broken sleep and nightmares!

Monday, 26 April 2010

So apparently my hand is broken

Went to see my orthopedic consultant today. Now he is apparently one of the best hand surgeons in the country, his nurse told me no less than five times how wonderfully talented he is.
I first saw Mr. Hargreaves in September of last year, I've since been to his clinic four times, yet never really been given a difinative diagnosis. He has sent me for an MRI of my shoulder, for 2 sets of nerve conduction studies and several blood tests.
He, to start with, thought I had either a pinched nerve in my elbow or a brachial plexus injury. Apparently I have neither of them.
He told me today that I have, for a reason he does not know, a huge lack of ED tendons in my right hand. Apparently he should be able to easily feel them working, but cannot. He has asked for me to have an ultrasound scan of my hand to give a full diagnosis.
He did however say that the ultrasound was only going to conferm his diagnosis, so that we all knew the cause of my massivly weak right hand.
The only treatment he could offer me would mean that I would regain some function in my 2 rubbish fingers, however I would never be able to bend or straighten each finger on it's own. They would all need to either be in a fist, or straight. I don't think this would be a good move, it would make even simple things such as typing very difficult, maybe this would be an option at a later time, but not in the near future.
It is nice, even if nothing can be done, to finally have the possability of a name for what's causing my strange hand. I was starting to think my brain was making it up.

Anyway, it's almost midnight and my headache is preventing me sleeping. I hope this will subside and allow me a few hours of proper sleep, I'm off to pizza hut and the cinema tomorrow. Not too sure if my head will enjoy looking at a screen for two hours =\

26th April

Today is the 26th April. It's a Monday morning and the weather is rubbish. After having temperatures close to 20 degrees for the past week its looking rather grey outside at the moment.
Just had breakfast in bed courtesy of my mummy! I feel I am putting huge stress on my family. I seem pretty upbeat about it, cracking jokes about my huge brain. However in all honesty I am shitting myself. The idea of having my skull cut open scares me half to death. I just can't seem to tell people. I mean people keep telling me "how brave" I am. How they "couldn't act the way I am l, in face of such life changing news" I guess I don't want people to know I am scared, I want to put a brave face on it, in order to make people feel that it's not that bad, not going to affect me. I downplay my headaches, pushing myself too far to 'prove' I am doing fine. This then makes sleeping very difficult as my headache is always worse in the evening, and if I've pushed myself during the day, it makes it even worse. I need to find the balance of letting people know how much it hurts and protecting people. Not quite found that balance, I need to soon. The doctors are hoping to have me operated on and recovered by the new school year in September, which gives me about four months.

I've hardly slept for the past week or so. Seem to be cat napping. I'll go to be at about 10.30 and sleep for a hour or so before waking up for a hour or so. This happens all night till I get bored of it somewere between 7 and 10am.

I have a hospital appointment later today, with my orthopedic consultant about my rubbish hand. I am fairly sure he is going to hear my news about my CM and dismiss me from his clinic. I've been to see Mr. Hargreaves about 4 times and I don't think my hand is due to any problem he could solve, I think it's to do with my CM! The worst thing is he is always running super behind. This is massivly annoying when you are waiting but really good when you are in seeing him as he is very thorough. My appointment is at 13.35, however I will probably be seen closer to 3 o'clock.

I shall update this in due course.

Sunday, 25 April 2010

How I discovered I had chiari

So on the 26th March I woke up with a slight headache. I took some paracetamol and that shut it up. Had it for the next few days, nothing too bad, just a slight nagging that would go away with regular painkillers. I didn't think too much of it and spent the weekend out clubbing with friends.

Come the Monday morning I was still suffering so I booked an opticians appointment. I've had problems with my eyes since I was about 13. I am short sighted and have a squint in both eyes. The only time I have ever had a headache is when my glasses are due for an update.

Went on the Tuesday and the optician seemed worried about my headache, as by this point I had also gained double vision to add to my symptom list, which would increase in length quite rapidly over the next 24 hours. She was very nice and gave me my new pescription. She told me that my pescription had almost doubled in the 3 months since my last eye test. She also said she was concerned about my headache symptoms and told me to go to a doctor or A and E if my symptoms got worse.

Went to work the next day and was feeling very spaced out. I can't really remember anything about this day. Worryingly I don't rememer driving home. My headache had got worse throughout the day so after getting home at about 3.30 I had a nap in a dark room. Then when I stood up I passed out and was sick.

My mum then told me to get to A and E. My friend took me, I felt a bit silly and thought I would be told to go home and take more painkillers. I was seen by a triage nurse and rushed straight through to major incidents and put in a private room, as it turns out they thought I had meningitis when I first arrived. Ended up on morphine due to the pain, I would be on regular morphine for the next week and a half. My heart was at 150BPM and the doctors were concerned about this along with my pain, vomiting and constant spaced outness?!
Had an emergancy CT scan and was taken through to acute care. I spent the next 2 weeks in the nurological center being monitored. During this time I had regular blood tests and a lumber puncture. This was the worst experiance of my life, felt like my brain was being sucked out of my head.
Was told I had chiari, which was spotted on my CT.

I am currently waiting for an "urgent" MRI scan. Urgent in NHS terms means leaving me in pain and unable to do anything. I've been out of hospital now for almost 2 weeks and still have not got a date for my MRI scan. If I don't receive anything by Monday I will start hassling.

So that's all, I'm stuck in limbo. Not able to work or drive but not unwell enough to be in hospital and most days I am able to get out and about for at least a few hours. I think some people think I'm not that unwell, like if I tell them my brain is falling out I'm not supposed to be able to go out. They don't realise its a relief to get out, as it means the pain in my head is giving me a little break. I can't go far, to the shops or be driven to a friends house, but that's better than nothing.

Currently my symptoms are:
Double vision
Pressure in my ears
Neck pain
Top of my back hurts when the headache is really bad
Short term memory loss
Fuzzy head
I sometimes space out, I can loose hours doing nothing.
I get obsessed with silly things like playing solitare on my phone (I'm not normally such a geek, honest)
I also am having slight difficulty swallowing, like I forget for a moment how to swallow.

Medication I am currently on:
Gabapentin 100mg three times per day
Paracetamol 1000mg four times per day
Dihydocodine 60mg four times per day
Ranitidine 150mg twice per day
Amatriptlyine 60mg at night
Folic acid 5mg in the morning
Ibuprofen when needed up to four times per day
This just about controls the pain. It's still there, but I can ignore it. It gets worse at night, around 8pm and it wakes me up during the night quite regularly.

Next update when I get an answer about my MRI.

First post!

I have recently been told I am suffering from Chiari type 1 malformation (CM)

This blog will be updated regularly with what happens as I find more about what is happening inside my head!
I wanted this to be from the view point of someone in the UK, as all the other blogs seemed to be by American people. I couldn't find one from an NHS point of view.

This first post will be all about what I know so far.

About a year ago I started suffering from a weakness in my right hand. It then developed from a weakness to a clawing of my ring and little fingers.

Not an amazing picture and for some reason it is mirrored, but this is as far as I can straighten my little finger.

I had tonnes of tests done, 2 nerve conduction studies, too many blood tests and an MRI of my shoulder.
The nerve conduction studies showed nothing, as did the MRI.
The blood tests showed I was suffering from very low vitamin B12 and folate levels.
The neurologists recommend splinting and regular physio.

So I got a horrid splint and had one session of physio.

That's when my chiari adventure began on the 31st March 2010.