Wednesday 10 April 2013

Laura's Rogue Eyeball - An Update

Thought I'd give you all an update on my CNVM! Lucky you.

Last Friday, I went to get my first injection into my left eyeball, to hopefully stop my CNVM from worsening. I was SO nervous. Sarah came with me to hold my hand, and we both took the afternoon off work. When I arrived, I went through quite a few tests, while Sarah sat in the waiting room with the oldies - everyone there with my condition were in their 70's+!!!

After having my eyes dilated  photographs and all sorts taken of them, I went to see the doctor who would explain the procedure to me. 'Is the spot still there?' was the first thing he asked. I thought it was a trick question, of course it was!! He went on to explain that it looks like there has been improvement in my eye. The pocket which is there now has no liquid in it, which it did last time. The injections apparently are to remove liquid from the pocket, so there would be no point in getting the injection.

Dilated eyes
I breathed a sigh of relief, but also was quite annoyed to be told something different once again than previously. When I said to him that the previous doctor I saw said there was no chance of it getting better, he shrugged and said 'that's not right'. Great. I'm so tired of being told different things every time I go back! To be fair though, I think they didn't expect it to improve, it seems like my condition is not something they see often in young people.

Apparently, over the next few weeks, it could either improve more, in which case they won't do any injections and will just monitor me, or it could get worse again, and I'll go through with the injections. If it gets better, its likely I'll still always have trouble seeing out of my left eye, because there will be scarring. But if it gets worse, apparently I won't go completely blind in my left eye (preferable) but will have a blind spot like below. I don't want that!
Top left :(
One other thing, apparently the injections aren't covered by the NHS. Someone had applied for funding for me last time, but didn't, oh you know, TELL ME that I may have to pay for them myself, potentially twice per year for the rest of my life!! Not sure how that detail could have slipped his mind.

Anyway, as frustrated as you can tell I am, this is good news - keep your fingers crossed for me that by my next appointment on April 19th, it will have improved even more!

Sincerely, Eyepatch Magee


4 comments:

  1. Fingers crossed for you, hopefully it will keep on getting better! Cx

    p.s. I used to have a squint when I was younger and I remember those dilating eyedrops all too well - I hated them!

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  2. Keeping our fingers crossed for you hunnie....lots of love xxx

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  3. I will send out positive vibes for you and I will have my little Valentina pray for you too...

    I am glad you updated, I have been concerned... I just hope it keeps improving:)

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  4. Laura I am so glad to hear things are looking better (no pun intended). Hope the appointment in 2 days brings more of the same news, and thanks for the update!!

    Love you lots and lots,
    Tina

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