weird

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I had proton beam in February 2021 and as it was close to the optic nerve my vision in that eye has been deteriorating until last week

my eyelid has been been very tender for most of the last week and the last few mornings i have needed to bath it as it has been partially closed .

My mum looked at it this morning and says it looks like a stye on the eyelid.

The weird thing is that my general vision in that eye is better than it has been,

Has anyone else experienced this.

  • Hi

    I'm just 'bumping' your post as I noticed that no one had replied yet.

    Have you spoken to your CNS about your tender eyelid?

    x

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  • hello i’m sorry to hear about your eye lid. How is your eye sight now ? i had my proton beam therapy in March 2022. My tumour was touching my optic nerve. i have been told to expect total sight loss in that eye. So far so good. Did it take a long time to change? I hope you are keeping well and good luck. 

  • Hello walking50

    My eyelid developed  into quite a saga.

    I went to a pharmacy hoping they could give me some cream  for it. She said it was an insect bite and told me to contact to my GP. i had to get my mum to ring as with our surgery  you start trying to ring at 8.30 and hope you get through - often if you do get through  you could be told there are no appointments available and to ring back the next day and the next day etc - not great if you are working. my mum did get speaking to a nurse who suggested the local minor injuries  department.

    this too works on a try to get through basis - i did get through - no appointments - try going up to A&E - with 12+ hours waiting time - no thanks.

    i then found out  that Specsavers over a triage service so got an appointment there. He said yes probably a bite and to use hot & cold compresses on it and to dab on a very gentle moisturiser. he also for his own interest (you will find opticians love our eyes) did a free OCT scan and rather worryingly said there was fluid in the eye and said he would send a report to the hospital but as i was due a check up in September they could check it then.

    No September appointment appeared so i rang the hospital last week to be told they are running 2 months behind so i am left with my old condition unchecked and a new issue unseen.  

    Others on here would say speak to your nurse or your consultant - i have neither .the only nurse i saw when last at the hospital was one that put dilating drops in and then vanished and the doctor - who could have been a consultant was of the next please variety - problem is there are no ocular oncologists in Belfast.  

    AS for my eye sight  it was the deterioration that sent me to the optician in the first place - I'm not sure just how much worse my sight is since that. it is as though my nose is in the way if i close my good (short sighted eye).

    a friend asked why i didn't wear glasses the whole time was it because they were varifocal - I said my glasses weren't but my eye was.