Removal of eye

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Hello everyone.

The last 3 weeks have been the hardest in my life.

3 weeks ago optician noticed something in my eye, sent me to A&E who referred me to Moorfields where they confirmed I had a large uveal melanoma in my right eye. 10 days later, on Monday they removed my eye. I'm at home now recovering and trying to get my head around what happened in the last 3 weeks...

I think overall I'm doing OK but it is extremely hard. I haven't only lost an eye but now am extremely nervous about the future and I'm finding it hard to keep my anxiety in control. I had my 1st CT scan yesterday and although they didn't tell me anything about the results at all, I went through a minor panick attack. 

Is this something that others experience too? Does it get easier as the months pass?

I also wanted to ask some more practical questions about eye removal and adaptation to new reality. At Moorfields I feel they downplay the impact significantly. The only discussion I had with anyone there was the consultant saying I can do pretty much anything with just one eye, can drive, swim, etc. No information or support given about the challenges I might face as I adapt.

6 days after I lost my eye I still feel anxious leaving the house and can't imagine ever again being in a crowded place on my own, let alone driving. I feel the my good eye is not seeing as well as it used to, sometimes my vision goes blurry and I find it difficult to lift my gaze or look around(because my removed eye is sore when I move my eye around). My good eye get tired and I find myself closing my eyes often gor a rest. 

Us this normal? Did anyone else go through this?

How long is the adaptation? Did you receive any support with this adaptation process? I keep thinking that there should be advice out there about what to expect, what you can do to help, exercises gor your eye and brain to help the adaptation...

If anyone has any tips I would be very grateful.

Thank you. 

  • I am so sorry to read your post, you have been through so much recently that will take time for you to process.
    There is light at the end of the tunnel, even though I’ve not experienced enucleation, but know many that have. I was diagnosed with Ocular Melanoma nine years ago and after proton beam radiotherapy have annual surveillance at Liverpool.

    I also joined a wonderful online support group via OcuMel. UK. We are a caring friendly amazing support group. There are many from within the group who have had their eye removed due to cancer. Most of us have regular 6mthly scans. Hopefully you may join us at OcuMel UK, at the end of the day it’s about support.

    All the best,… hope you get the right support that will help break the sense of isolation. xxx

  • Hi 

    I had orbital exenteration in feb & whilst I look terrible even with a patch I would encourage you to get out and try things. My surviving eye was a bit unhappy at doing all the work but within a few weeks of excersising it the fuzziness you describe mostly went.

    Try getting in the car as a passenger, imagining your driving. Ill bet after a couple of trips youll notice more than the "binocular" driver! You just seem to concentrate more Strangely a motorcycle is even easier as you can see both mirrors with the one eye , although the radiotherapy people panicked a bit when i rode there during the rail strike!

    I also get tiredness in the good eye and irritation from the muscles on the missing side but this has got much better with use.

    Hope this helps .Tony

  • Hi . How are you getting on? 2 months was around the time my remaining eye was happy with working on its own!

    Tony

  • Hi Tony. Thank you for checking back with me.

    The last 2 months have been a continuation of unlucky complications. Sadly my body did not tolerate the eye implant so last week I underwent surgery to remove it, so a lot of medical appointments lately.

    But on the positive side, my remaining good eye has adapted pretty well and mostly I don't notice that I lost an eye. Some evenings it gets a bit tired, but that's OK. 

    I hope you are doing well.

  • Hi. Sorry to hear about your implant not working . Ive a skin graft covering my missing orbit and was told it could fail in radiotherapy but thankfully it held up well . After 6 months my eye is still tired by early evening and the missing eye starts "twitching"!

    Plan for me is a prosthetic eye but will take about another year so really drags along .

    Keep positive, we,ll get there!