Hi my sister recently visited her optician (she is 23) and her eye sight had deteriorated a lot (it went from 0.5 to 3.25 in both eyes, however i'm not sure of the timescale). He tested for KC and was sure that she had it but said he would want to repeat the tests in 6 months to confirm. My sister didn't ask many questions and it was only when she rang them back did they tell her the name. He said to her that it was serious and she could or would go blind (?), is this actually the case! He also said that it affects blonde hair blue eye people morre than most, Is this true?
What i really would like to know should she get a definative diagnosis sooner rather than later with a consultant referral rather than an optician? Also he couldn't give her her full prescription because the difference was so dramatic and she is even struggling with the 2.25 prescription.
If she does go for a second opinion where do you think the best place to go is we are based in Cardiff. Also what questions relating to severity and progression should she ask?
Sorry for going on
Cheers
Advice
Moderators: Anne Klepacz, John Smith, Sweet
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Andrew MacLean
- Moderator
- Posts: 7703
- Joined: Thu 15 Jan 2004 8:01 pm
- Keratoconus: Yes, I have KC
- Vision: Other
- Location: Scotland
Re: Advice
Hello and welcome to the forum
I am sorry to hear your sister's dolorous news, but offer her the best advice that anyone ever gave me: Don't Panic.
Was your sister referred to a hospital ophthalmologist? Is the optician she sees in an NHS clinic, or on the high street?
If the answer to the first of these questions is 'no', maybe she should go to her GP and explain what she was told and ask for a referral. If the answer to the second of these questions is 'high street', then she really need not do anything further at this stage as the ophthalmologist will probably refer her to an approved high street optometrist or to an in-house clinic.
Every good wish.
Andrew
I am sorry to hear your sister's dolorous news, but offer her the best advice that anyone ever gave me: Don't Panic.
Was your sister referred to a hospital ophthalmologist? Is the optician she sees in an NHS clinic, or on the high street?
If the answer to the first of these questions is 'no', maybe she should go to her GP and explain what she was told and ask for a referral. If the answer to the second of these questions is 'high street', then she really need not do anything further at this stage as the ophthalmologist will probably refer her to an approved high street optometrist or to an in-house clinic.
Every good wish.
Andrew
Andrew MacLean
Re: Advice
Hi
Thank for your reply. She isn't panicing yet because they haven't confirmed it as yet.
She was seen by an Optician from Boots.
Should she get a second opinion sooner than 6 months or go to her GP, are Boots approved to do this sort of diagnosis?
Cheers
Thank for your reply. She isn't panicing yet because they haven't confirmed it as yet.
She was seen by an Optician from Boots.
Should she get a second opinion sooner than 6 months or go to her GP, are Boots approved to do this sort of diagnosis?
Cheers
-
Andrew MacLean
- Moderator
- Posts: 7703
- Joined: Thu 15 Jan 2004 8:01 pm
- Keratoconus: Yes, I have KC
- Vision: Other
- Location: Scotland
Re: Advice
Actually, one of the most talented optometrists in the private sector working with people with KC works for exactly that chain chemist. I can think of no reason why you would want to question his judgement that KC may be present.
I would go along to my GP and explain what the optometrist has said. The GP would then be in a position to judge whether to make a referral to an ophthalmology clinic.
Every good wish.
Andrew
I would go along to my GP and explain what the optometrist has said. The GP would then be in a position to judge whether to make a referral to an ophthalmology clinic.
Every good wish.
Andrew
Andrew MacLean
-
Lynn White
- Optometrist
- Posts: 1398
- Joined: Sat 12 Mar 2005 8:00 pm
- Location: Leighton Buzzard
Re: Advice
Hi there,
There are several issues here. First of all, its seems that your daughter has undergone a large change in prescription. This can be due to changes other than keratoconus (just normal changes in the length of the eyeball, for example). However, if it is the astigmatism that has gone from 0.50 to 3.25, then keratoconus becomes more likely. The optometrist is doing the right thing in suggesting monitoring the situation but nothing in this world is set in stone. If she is struggling to adapt to the lower prescription, then the first thing to do is to go back to the optometrist and explain this. However, I am not sure how long she has been struggling to adapt? It is entirely normal to take a while to get used to such prescription changes. On the other hand, it may be she simply will not able to adapt and then really she does need to be referred onwards to a consultant to investigate these changes.
There are two ways of doing this but both should involve the original optometrist as he is the one who has a record of the relevant changes in prescription.
First: to be referred to a consultant on the NHS, you do have to go through the GP, as Andrew says, but the GP requires information from the optometrist to refer onwards. The GP has no equipment to measure the cornea and the hospital would also appreciate the the information gathered by the optometrist.
Secondly: if you wish to go for a private consultation, the optometrist can refer you directly without going through the GP or indeed you can go straight to a private consultant but again, it would be much more useful for the optometrist to give any data he has already collated on changes in prescription.
As for the information about keratoconus. I am not sure about the assertion it affects fair haired blue eyed people more as this is simply not true. For example, the highest incidence in the UK is in people of Indian and Pakistani origin. As to it being serious and having implications of going blind, that is worse case scenario. Like most other medical conditions, there are degrees of severity and it is worth noting that of all people registered as blind, only 5% have actually no vision at all. It is for this reason, the definition is now "severely sight impaired".
For many people with this condition, it progresses for a short while, often more in one eye than the other, then stops and vision is maintained with spectacles or contact lenses. In others, it progresses more aggressively and causes such distortion on the front of the eye that good vision is ONLY possible with contact lenses. In more severe cases, or where contact lenses simply don't work for a variety of reasons, a corneal graft becomes necessary and during the time of this procedure, vision may be so poor that the person may have to register as being severely sight impaired, if both eyes are equally affected. The majority of people recover good vision once the graft has settled and then come off the register. A very small number of people suffer complications from the condition itself and/or grafting and are registered as severely sight impaired.
This is why the optometrist is monitoring at the moment. Not only may this not actually BE keratoconus, if it is, it may not progress any further.
I do have to say, I have monitored patients before where I was fairly certain they had early keratoconus, as they had all the signs, but it never actually developed.
Lynn
There are several issues here. First of all, its seems that your daughter has undergone a large change in prescription. This can be due to changes other than keratoconus (just normal changes in the length of the eyeball, for example). However, if it is the astigmatism that has gone from 0.50 to 3.25, then keratoconus becomes more likely. The optometrist is doing the right thing in suggesting monitoring the situation but nothing in this world is set in stone. If she is struggling to adapt to the lower prescription, then the first thing to do is to go back to the optometrist and explain this. However, I am not sure how long she has been struggling to adapt? It is entirely normal to take a while to get used to such prescription changes. On the other hand, it may be she simply will not able to adapt and then really she does need to be referred onwards to a consultant to investigate these changes.
There are two ways of doing this but both should involve the original optometrist as he is the one who has a record of the relevant changes in prescription.
First: to be referred to a consultant on the NHS, you do have to go through the GP, as Andrew says, but the GP requires information from the optometrist to refer onwards. The GP has no equipment to measure the cornea and the hospital would also appreciate the the information gathered by the optometrist.
Secondly: if you wish to go for a private consultation, the optometrist can refer you directly without going through the GP or indeed you can go straight to a private consultant but again, it would be much more useful for the optometrist to give any data he has already collated on changes in prescription.
As for the information about keratoconus. I am not sure about the assertion it affects fair haired blue eyed people more as this is simply not true. For example, the highest incidence in the UK is in people of Indian and Pakistani origin. As to it being serious and having implications of going blind, that is worse case scenario. Like most other medical conditions, there are degrees of severity and it is worth noting that of all people registered as blind, only 5% have actually no vision at all. It is for this reason, the definition is now "severely sight impaired".
For many people with this condition, it progresses for a short while, often more in one eye than the other, then stops and vision is maintained with spectacles or contact lenses. In others, it progresses more aggressively and causes such distortion on the front of the eye that good vision is ONLY possible with contact lenses. In more severe cases, or where contact lenses simply don't work for a variety of reasons, a corneal graft becomes necessary and during the time of this procedure, vision may be so poor that the person may have to register as being severely sight impaired, if both eyes are equally affected. The majority of people recover good vision once the graft has settled and then come off the register. A very small number of people suffer complications from the condition itself and/or grafting and are registered as severely sight impaired.
This is why the optometrist is monitoring at the moment. Not only may this not actually BE keratoconus, if it is, it may not progress any further.
I do have to say, I have monitored patients before where I was fairly certain they had early keratoconus, as they had all the signs, but it never actually developed.
Lynn
Lynn White MSc FCOptom
Optometrist Contact Lens Fitter
Clinical Director, UltraVision
email: lynn.white@lwvc.co.uk
Optometrist Contact Lens Fitter
Clinical Director, UltraVision
email: lynn.white@lwvc.co.uk
Re: Advice
Thank you very much for both your replies they were very helpful.
I think my sister has had the glasses for about 7 weeks, the optician did say they would take some getting used to and may make her giddy or sick or may experience headaches. I think she'll wait for her second oppointment and the take it from there and hopefully she'll come away more informed.
Does anyone have any question ideas that i can tell her to ask so that she is more informed about her future and progrssion if it turns out to be KC
Thank you in adavance
I think my sister has had the glasses for about 7 weeks, the optician did say they would take some getting used to and may make her giddy or sick or may experience headaches. I think she'll wait for her second oppointment and the take it from there and hopefully she'll come away more informed.
Does anyone have any question ideas that i can tell her to ask so that she is more informed about her future and progrssion if it turns out to be KC
Thank you in adavance
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