Scar on cornea after shingles in the eye

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I had shingles almost a year ago in my eye, head and forehead. I have been attending the eye clinic over the past year and have only just been told that I have a scar on the cornea of my right eye, my eyesight is ok thankfully, but i have discomfort every day, itching and my eye often feels sore. it is depressing to know that I will probably have this forever, so it is something I have to get used to living with, as eye drops,  gels etc do not work! Does anyone else suffer with this?

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31 Replies

  • Posted

    Hi Jane, I didn't have it in my eye but a friend did, years ago. It took her a long time to recover I think but she improved gradually. Mine was on the shoulder, upper arm and wrist/ thumb area. I still get some Post Herpetic Neuralgia in those areas, especially my hand/wrist/thumb. Maybe it's PHN you have in your eye region. A doctor may be able to help but I think you need referring to a pain clinic if it's really bad, or an eye specialist. I have dry eyes and use liquid tears plus optrex itchy eye dros. Not together though.

     Best wishes, Poll x smile

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    • Posted

      I get no pain in my eye, more irritation , itching , and it feels sore  sometimes, but there seems to be nothing I can do apart from the liquid tear drops i have and gel for night time, The scar will be there forever so I have to live with it and just be glad i have not lost my vision., I was always so healthy before I got the dreaded shingles, but did have a lot of stress in my life which obviously built up over time!
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  • Posted

    Unfortunately I don't find eye docs very forthcoming with information. Going on six months with burning and vision fluctuations in right eye. Not one opthalmologist has offered an explanation or solution. Just keep the eye moist with drops is all I get as help. Scary!

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    • Posted

      It's not any comfort but MOST doctors are clueless about shingles! Maybe you can go to a university or specialized eye clinic. Ask your doctor for a recommendation. This sounds like it's time to consider a specialist. At least you'll feel like you got better treatment and a better understanding.

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    • Posted

      I hear the same thing as you do! I was just told to give it time, and yet the other day I asked if it would ever go and the same eye dr said no!! Unless she meant the scarring, I think it is like a conveyor belt there, SO many people waiting to  be seen etc! I find that keeping busy helps to take my mind off it.
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  • Posted

    Exactly, it is a conveyer belt. Too many opthalmologists are busy making a buck doing cataract operations and not enough are treating more seious eye conditions. I find the burning comes in waves. I had eight or nine days when it was not too bad and then Saturday by late in the day it came back and I am still burning and also feeling numb and stiff on the browbone.
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    • Posted

      I get the itching on  my browbone and in the eye socket really badly, I try to just rub gently as it's impossible to just leave it, drives me crazy!! It goes right down to my eyelashes too! My actual eye gets sore too and it is almost a year ago that I was diagnosed! How long ago were you diagnosed?

       

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    • Posted

      Jane. I came down with ocular shingles last September. So into sixth month of the post herpetic neuralgia and eye pain. My eye is also terribly bloodshot and I have never suffered from bloodshot eyes before. Even my unaffected eye is bloodshot. I think it is being overworked to make up for the bad eye.
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  • Posted

    Hi Jane it's Lisa, Bob's wife. We've spoken before on this forum.  My husband had eye shingles on July 11th.   He had terrible itching and eye pain for a while and that has subsided.  The opthamologist has been watching him all along and said there was no scarring on his cornia.  We are not 7 months out and he went to the opthamologist the other day.  He was alarmed as he saw significant scarring on his cornia that he claims was not there at the last appointment.  To me this doesn't make sense...Not sure what to make of it.  How can scarring show up 8 months later, but no one else saw it before?  We are seeing two cornia eye specialists next week to see what they think.  Have you or anyone else on this forum experienced this?  His eyes seem a bit itchy lately and they are a little red.  I am very frustrated how things like this pop up and they give no explanation.  Could the scarring occur 7 months later?

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    • Posted

      I think that must be the case, as I have been told all along that my eyes would be ok and to give it time, and then this week after 11 months i get told i have scarring!! It is scary as I don't know what the future holds and if anything else will shoiw up at the next appointmernt in 4 months! I am just so sick of having the discomfort and burning feeling every day at different times, My right eye never feels the same as the left eye!

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    • Posted

      I would be very interested to hear how you get on when you see the cornea specialists next week, and what they have to say about it,  so please keep in touch! Thank you
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    • Posted

      The lady I always see at the eye clinic just said I had a scar on the cornea, I was so busy asking other questions that I didn't ask her why it had only just been noticed! I look forward to hearing how you get on, thank you !

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    • Posted

      Saw the cornea specialist.  He said the scarring occurring now is definitely a residual effect from the nerve damage from shingles.  They put him on steriod eye drops (fluoromethodlone 0.1% drop, one drop 4x/day).  The doctor also said the nerve damage is also causing dry eyes in BOTH eyes....so he is also on eye drops for BOTH eyes.  The scarring is on the inside of the cornea of the eye affected by shingles (right eye).  We are going to another specialist for a second opinion.  It is really starting to affect his vision.  Hope this info helps.  
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    • Posted

      Thank you so much for getting back to me! How long has he known that he  has a scar on the cornea, and when did the shingles begin? Mine is also my right eye, sore every day and itchy at times too, my vision is ok but I do worry about this changing and also hope I never ever get shingles again especially in the eye!! So the specialist didn't really inform you a lot more that the eye specialist? I was not given anymore steroid drops as they can thin the skin but I did have them a few months ago, I have a gel to use at night and eye drops anytime in the day, (false tear drops) I look forward from hearing from you soon and thank you!!

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    • Posted

      Hi Jane.  My husband's shingles came out July 11th and 7 months later is when the cornia scars started to appear.

      I have some new news to report.  We got a second opinion from a cornea specialist who is very involved with research in this field.  He did not agree with the other cornea specialist.  He believes it is shingles in the eye again that is causing the cornea scratches.  He believes in stronger steroids..prednisolone acetate1% for one month.  If that doesn't help, then he is restarted my husband on antiviral therapy for a much longer period of time.  He also believes the antiviral therapy may help the PHN.  At NYU medical center in NY they are doing a study on this exact problem.  http://nyulangone.org/press-releases/national-multisite-study-led-by-nyu-langone-seeks-new-innovative-ways-to-treat-shingles-of-the-eye

      Check out the link above.  Our doctor is involved with this study.

      I hope this information helps you.  If you have scarring of the cornea, you need treatment...steriods and/or antivirals.

      Where are you located?

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    • Posted

      I am in Dorking Surrey, I have just been told to go back in 4 months to the eye clinic, do you think it could worsen during that time then?  She did mention steroids but said that they thin the skin so were not advisable, I don't know what to do for the best!

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    • Posted

      I am so glad I read your reply as it got me thinking that I need more answers, so I have just phoned the Opthalmology Outpatient's dept and spoken to the secretarty who deals with appointments with the lady I always see, there is always a very long wait but I am so lucky there has been a cancellation next Wed, which is the same day I will be also going to the fracture clinic ( broke a bone in hand last year!!) I am going to write down everything I wish to know, especially about my eyesight and how bad the scar is. Maybe it isn't in the line of vision and that could be why i can still see ok, but i need to know! I wish your husband good luck with it all and will keep in touch on here, letting you know how I get on next week!

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    • Posted

      Yes, you need to seek answers and specifically ask about the NYU study and the type of treatment they are testing.  Maybe you should do both.  My husbands eye sight isn't terrible, but it has gotten a little worse recently with the scars.  Keep in touch.

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    • Posted

      Does your husband have discomfort in his eye every day? i do , as soon as i wake up and  it's a bit like having something in your eye and that feeling  comes and goes, I was told it's bacause of the scarring, so that is a very depressing thought it I have to live with this forever!! I would even rather have the itching as there aree creams that help that!

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    • Posted

      Hi again Lisa,

      I have just been lookin  up information on the cornea. I typed in "can  a scar on cornea improve?" and the page I then went to was,,,,, Facts about cornea and corneal disease, ( National Eye Institute) very interesting, I never knew there were 5 layers to the cornea, I never get told these things at the eye clinic but maybe you were given that info when you saw a specialist? I will be interested in the answers I get next Wednesday!

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    • Posted

      Hello again Lisa,

      I have better news! My scar is very small apparently and my vision will not get worse due to the shingles, My eyesight is the same in both eyes as before, and the pressures are good too, I feel so much happier now although still have a sore eye, that might improve hopefully, still got the eye drops and gel for at night. . How are things with you now?

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    • Posted

      Hi Jane.  My husband went for a follow up with the cornea specialist.  The steroids are definitely helping his eye.  They are continuing the drops for a few more weeks and then may transition him to antivirals.  This doctor is part of the study at NYU i and they may put my husband on long term antivirals to keep the shingles in control in the eye.  Just some info for you.  Please stay on top of your eye because the shingles can reactivate like it did with my husband.
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    • Posted

      Hi Lisa, 

      It will be a year on Friday that I got shingles, and it is only now that my eye seems to be improving, not itchy so often (although still every day) and my actual eye isn't feeling sore as much as it was. so I am feeling morte positive now! I do have an appointment at the eye clinic in June though, 

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    • Posted

      I've been reading these posts, but wasn't active as my shingles were  on my back and a little on my breast. But yesterday something clicked--I think it's common to get scarring, even with only a mild rash. Mine was barely noticeable, but after 6 months I noticed it's fading. So isn't a scar a scar no matter where it is? You also gave me hope that as I'm 6 months into PHN/healing, that I may continue to improve. Also, I know of two people who had pain for 7 months before they felt they were almost healed, but many years later, they still get some pain in the same area.

      As with all other shingle-related issues, I'm sure no-one's ever done a longtitudinal study as to when you totally stop healing or stop symptoms at all.

      Hey, Help, Please, we're over here!! Come on, we're happy to share what we know you Dorky Docs! (I have a few other choice phrases, but I think they'd ban me LOL!)

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