How normal ior abnormal is this please?

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Henrys mum
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How normal ior abnormal is this please?

Postby Henrys mum » Mon 23 Apr 2012 6:03 pm

right eye -11.75 6.40/8.70 td rose k2 6/9
left eye -16.00 5.80/8.30 red x2 rose nipple cone k2 vision not recorded wearing lens
Optimum extra

My son has let me have this prescription to show you....he is due another test because his left lens keeps falling out and he says his left eye feels worse. Is the problem bad? My son is 20 and will not ask questions but it's beginning to get him very frustrated, affecting his life hugely and I need to know how to help him. He has been being seen as a student in Stoke. I am having him register this week here in Birmingham in an effort to get him some support or other opinions. I have tried to look on sites but I find it all very confusing. I'm not sure what is relevant, All advice welcome x x x

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Anne Klepacz
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Keratoconus: Yes, I have KC
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Re: How normal ior abnormal is this please?

Postby Anne Klepacz » Mon 23 Apr 2012 7:39 pm

Welcome to the forum,
I'll leave an expert to comment on the prescription. But a nipple cone (one that is small and pointed) is, I think, one of the hardest ones to fit with lenses, so it's probably not surprising that it keeps falling out. The Birmingham eye hospital in the Dudley Road sees large numbers of people with keratoconus and has very experienced optometrists in the contact lens department. So they should be able to advise whether a different type of lens would work better for your son. Unfortunately, everyone with KC is different, so Rose K lenses work very well for some eyes but not necessarily for others.
As well as being a website, we also produce various information including an information booklet on KC, DVDs of the conferences we hold which describe the current options for KC and newsletters with relevant articles. If you e-mail anne@keratoconus-group.org.uk or PM me your postal address, I can send these to you. And have you found the leaflet 'Supporting Students with KC' that you can download from our home page? www.keratoconus-group.org.uk/sitev3/publications.html
Anne

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Lynn White
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Re: How normal ior abnormal is this please?

Postby Lynn White » Mon 23 Apr 2012 10:46 pm

HI Henry's Mum!

Keratoconus is a very individual condition, so it is difficult to generalise from prescription information, Severity of keratoconus is determined by looking at corneal thickness and topography, which is a technique used to map the surface shape of the eye.

Having said that, the prescription information suggests that the KC is already past the mild/early stage. Keratoconus is a progressive condition that is most active in the age group that your son occupies. At this point, if your son was a patient of mine, I would be discussing cross linking, (CXL) which is a procedure designed to stop the progression of keratoconus. However, this procedure is not generally available on the NHS, as it has not yet been approved by NICE, and is therefore unlikely to be discussed in an NHS consultation.

That does not mean it is not effective, it means that there have not been enough randomised clinical trials to prove its efficacy. This has turned into a catch 22 situation. The NHS is the only big institution capable of overseeing such trials. Treatment is currently going on in private clinics but they do not share information Nationally, as there is no centralised body collating this information. However, until this is done, the NHS cannot accept it!

Cross linking has been around for over 15 years and is the only treatment shown to be effective in halting Keratoconus. I have followed many patients through this procedure and know it works.So I would urge you to investigate this option for henry.

This condition requires a fair bit of information gathering to get a handle on it and I am happy to help you walk through the options.

Lynn
Lynn White MSc FCOptom
Optometrist Contact Lens Fitter
Clinical Director, UltraVision

email: lynn.white@lwvc.co.uk

Chris_J
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Keratoconus: Yes, I have KC
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Re: How normal ior abnormal is this please?

Postby Chris_J » Tue 24 Apr 2012 12:36 pm

Hi Henrys Mum,

I can't make any comment on the lens prescription (As I wouldn't have a clue and could only compare to my lenses which wouldn't help!) but I can say that Birmingham Midland Eye Hospital is really good; I've been going there for years and they have always been fantastic.

That's not to say there hasn't been the odd problem (for example they did get the prescription on my new lens wrong) but they do everything they can to sort things out when something does happen. (In fact the case of that lens they got me back in to see someone to fit the replacement lens in just over a week so you can't say better than that!)

I wish your son all the best - and get him reading this forum - it's been great to be able to talk to other people with KC.

Cheers

Chris


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