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Discolouration on Optic Nerve with Septo-Optic Dysplasia

Posted , 4 users are following.

Pandacake
Pandacake

Hey,

Please can someone help me? Because I'm having no luck with Opticians, GPs or the eye clinic. 

I have Septo-optic dysplasia, and I'm lucky if I ever get to see someone who's even heard of it because it's apparently one of those rare and awkward conditions with varying symptoms. But basically, in my case, the nerves in my eyes didn't develope well or at all. 

I have 6/60-6/48 vision in my right eye and 0 in my left eye; as in I don't even see black or anything at all. I don't think light could ever get in there.

My most recent check up at the Optician showed some discoloration on the optic nerve in my left eye (the blind eye). It appeared black, apparently, which my Optician said meant it had been there a long time, as aposed to grey? But no one seems to know if this is normal for an optic nerve that never formed properly. 

Apparently the discoloration is not mentioned in any of my letters on record, though. Is that weird? That's the only thing making me worried. Some people say it should be obvious so not included, but others say that means it's new?

I've tried researching this myself but Google says apparently now I have possible optical nerve tumours. That sounds horrible, too.  [sad]  

I just need someone who understands. Please help. Thank you!

2 likes, 9 replies

9 Replies

  • louise21112
    louise21112 Pandacake

    Posted

    Awe I feel for you I know what it's like to sit and worry unfortunately I don't have any info on this but want to wish you well try not to think the worst if anything serious was expected you would have been sent for more test xx
  • Pandacake
    Pandacake

    Posted

    Thank you smile

    I was sent for more tests, or I will be, when they're able to free up an appointment. I want to see a specialist who might have dealt with my condition but it seems unlikely/my doctor's just giving me no options too. 

  • nik43413
    nik43413 Pandacake

    Posted

    The discoloration can be associated with lack of pigments in the iris of the eye, but I have never heard of the disease. Tumors can result in cacer though. Good luck! Feel better soon!

    (I am not a professional, so don't take my advice over your doctor's.)

    • Pandacake
      Pandacake nik43413

      Posted

      Do you mean a discoloration of the pupil? Because I think my pupil is fine. It was just on the optic nerve.

      That's what I was worried about. The tumours/possibility of cancer. 

      It's okay. It's hard for me to find someone who has. If anyone knows anyone who might know, please send them my way.

      Thank you!

  • Pandacake
    Pandacake

    Posted

    Anyone got any ideas?

    Would atrophic discoloration (how my optician describes it) on the disc margins be assosiated with lack of use of the nerve, or? Is it likely to be something very bad/scary? 

    Cause I'm kind of terrified. 

  • Pandacake
    Pandacake

    Posted

    Can anybody help me? :C I feel so alone. 
  • shell70
    shell70 Pandacake

    Posted

    Hi! My son is 20 years old & was diagnosed with Septo Optic Dysplasia Pan Hypopituitary when he was 2 months old.  He became a patient of Dr. Mark Borchert at Childrens Hospital Los Angeles.  Dr. Borchert has been studying SOD for years.  He saw Adam until he turned 5,  I remember Dr. Borchert showing us actual pictures of Adam's optic nerves.  The right optic nerve was almost normal size but they were grey & black.  The left optic nerve was hardly seen, what was seen was also grey.  Surprizingly, Adam does not see out of his right eye, not even light.  His left eye he sees lower left quadrant with no periferal vision.  Tumors have never been mentioned, however he has always had a cyst above his left eye.  Have you thought of seeing a neuro-opthamologist?
    • Pandacake
      Pandacake shell70

      Posted

      Hello,

      Sorry this reply is so late. I honestly didn't think anyone would end up replying here. It's really good to hear some someone with experience of the condition, to be honest. Especially that you have a doctor's name who might know things about it! I know so few!

      I've been to see one a fair few times now, he didn't seem worried by the colouring as it's likely due to the optic nerve having never been in use and there were no signs of a tumour so that was good news. 

      Thank you so much for replying.

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