EYE EYE….what have we got here?


YEAH…the EYE saga continues…..

so HERE’s the thing….

my EYE (the right one) no longer does what i tell it to….

now EYE issues are not hugely acknowledged or recognised as a neurological issue or a symptom of chiari malformation…

so there are obscure divisions….

how would i put it

…GAPS…

in acceptance and ownership

and therefore who treats what?

and is this neuro problem?

is this an eye problem?

but THIS problem is in my face.

in my pictures….

in my physiotherapy….

HURTS when i put on eye shadow by pressing on the socket…

making me nauseous….

so THIS week am getting my eyes tested….

and i have no doubt at all that my vision has changed as it has for last few years…

and am aware there is:

  • NEUROLOGY,

  • there is NEUROSURGERY,

  • there is OPHTHAMOLOGY and

  • there is NEURO-OPHTHAMOLOGY….

  • all entirely different disciplines

now i have no idea who i need- but i DO know from the outset:

” that i have no intention of falling into the gaps between specialisms….oh no…..”

mark my words!

2014

a recap on time….
THESE were my best feature, the ould eyes.
my beautiful daughter also got them. 
my only brown eyed child.
x

swamped in fluid…cerebral spinal fluid…CSF

my EYEBALLS are under pressure from the back – in my skull- as the fluid is pushing..

PLUS my cranial nerves are all awash with this fluid and some of them plainly are affected so making some of my body bits not function PROPERLY…today we will discuss the eyes!

http://www.conquerchiari.org/documents/presentations/SYMPTOMS%20Presentation.pdf

there we go in technical terms.

in PHYSICAL terms?

32249_119897888052302_100000962754912_102380_6780407_n579885_395547013820720_1120492399_n

2013 The 2 pictures here were taken over the last

few years…notice i do have a VERY understanding and patient hairdresser 🙂

This picture – the one of me in the CHINESE hat and plait, was for pantomime pit and was taken last night.

Fermanagh-20130116-00214

The others over a period since the passport one 2009.

Spot the difference?

Since when has my face become so asymmetrical?

I have one lazy left eye – and one surprised right eyebrow…

Unbelievably different now that i look at it…and i did question it weeks ago, while getting my hair colour done…my eyes were different.

Fermanagh-20130117-00218me2IMG-20120121-00703 (2)this is in 2009 – not a mugshot

a passport ….see symmetry…even in my FACE!DSC_0076

all of these other pictures were taken in the last year – at some stage…

is it my imagination?

this IS the side of my face that feels tingling?

this IS the LHS of my brain that has the cystic tumour

Here is last yrs picture . What is going on?

Can you have a stroke in slow motion??

So YES i am now a very LOPSIDED face- apparently that is ok in Chiari world…cos we have no idea what to expect…

BUT not only do i LOOK non-symmetrical but i SEE non symmetrical… and my EYES don’t even work at the same SPEED or as a partnership.!

 

 

2014 OF COURSE NOW post surgery, i have a distorted view.

  • blurred vision
  • overwhelming moving pictures as i walk busy
  • poor visual total length
  • changing focal distance
  • eyes sore to touch up with eye shadow
  • eyes NOT keen to focus in morning
  • nausea watching a gaelic match where my head moves, and my eye with with it – other eye obviously searching to follow,
  • turn my head dizzy
  • change directions dizzy
  • eyes TIRED working.
  • my eyes WILL not co-operate with each other in the mornings.
  • so sight is blurred
  • my right eye is slower to move and react than my left
  • so i get a lazy eye in photos
  • my RANGE of vision is at it’s best NOT far – even with specs – even changing pairs…ANY option!
  • my specs prescription keeps changing
  • i carry lots of pairs of glasses with me – with different prescriptions
  • i am VERY photosensitive – the sun gives me a headache!
  • sun glasses on dull days even … cooool
  • when i move my head quickly…my eyes don’t BOTH go with it.
  • i have “eye exercises” so i try to train my eyes NOT to work only with my head.
  • i feel dizzy
  • if i am in a clean walled place, i have so many floaters its almost impossible to focus
  • if i am in a “busy” environment – things moving in other directions than i am travelling- i feel as if i am in a rollercoaster – by EYES-BRAIN can not easily process the relative movement.
  • it feels like walking through a kaleidoscope??
  • my Left eye is actually PAINFUL when i move it in its socket…it seems to have higher ICP near it? ( intra cranial pressure – for normal humans)
  • i feel like i am travel sick…MOST of the time
  • you know the “tell me where you start feeling double” test? I SEE DOUBLE at the start!
  • my EYES find it hard to tally with my BALANCE problems so is often easier to close eyes than process
  • looking down at my feet when i move is confusing for my eyes.
  • using my EYES a LOT – like “watching a child playing a football match” – exhausts my brain. THAT may seem stupid but it is a fact.
  • and NOW when i tried to cross my eyes at my OH —–only one moved!
  • NOW i am scared am losing my eye movement.
  • 5 weeks til ophthamology appointment

 

 

so… say a wee prayer

what do i do????

 

H

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One comment

  1. All the best with eye test this week Helen.
    If I was in your shoes, I would look on your eye muscle problem as a “different” problem rather than a new symptom of your existing neuro condition and get it fully investigated.
    My colleague was telling me about her mono vision the other day, she had laser surgery recently on one eye only, and now as both eyes have similar yet different abilities to see, she has adapted to using one eye! The brain is amazing how it can adapt! xx

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