Too advanced for specs - I dont think so!

[Ali Akay]

Libby,
The problem is, the level of vision keratoconics get with glasses is very unpredictable. Some people with fairly advanced KC get surprisingly good vision whilst others with relatively mild cones may find specs absolute waste of money! It depends, amongst other things, to the position of the cone apex, those with central cones usually struggle with glasses. Having said that, I always encourage patients to try to get a back up pair of specs as long as they realise they wont give as good vision as contact lenses.

One other factor is that it's not easy testing a keratoconic for specs, it doesnt require any special skill, but it does require the optom to be patient and take plenty of time. If patients ask me for advice I tell them to ask around for a good optom, perhaps try to have a chat when they book the appointment to see how clued up they are with KC patients, and, most importantly, avoid booking the appointment on saturday morning when they are likely to be very busy and just unable to spend the time required to get a decent result. If the optom is aware, he/she may allocate extra time for the appointment.

And, when you get your glasses, accept that they are a compromise and dont rush straight back to your optom and demand your money back! Try them for a reasonable time, and, obviously let your optom know if you just cant tolerate them, and he/she may need to tweek the prescription a bit. I have seen some keratoconics and, more commonly, patients who had grafts, coping with prescriptions that would appear impossible to wear

[Sweet]

Libby,

That is a lot of money and you do need to think about whether you are going to wear them or not. If i could see anything with glasses i would seriously pay that price just so that i could have a few hours of some sight whilst giving my lenses a break!!

Hope you work things out soon

Sweet X x X

[JoeK]

Hi Lia,

I was also quoted £185 plus cost of frames when I looked for glasses. I decided to shop around and got a small local optician to get me a complete pair of frames and lenses for £85. It does pay to shop around particularly if you are only likely to wear them for a couple of hours a day.

[Andrew MacLean]

When I moved to Glasgow I was given an appointment at the eye infirmary to see an optometrist. She found that my prescription had changed and that I needed new lenses.

This also meant that I'd need new back up specs. I had no idea at all about Glasgow optometrists.

The hospital optometrist was not really in a position to advise me (something to do with professional things), so I did not press her.

The ophthalmologist to whom I was referred at the same time did not seem to be bound by any such scruples. He told me to go to a "reputable optometrist with experience of Keratoconus". I offered him the names of some optometrists I knew and he kept saying, "no, someone with experience of Keratoconus".

In the end he said, "If I were you, I think I'd probably go to ..... (name of optometrist now long retired)."

The specs I got did not give me good sight, or anything like good sight, but they were better than nothing. They let me function even when my lenses were out. They even let me see my cards when playing bridge, but not the cards on the table. This latter handicap was never too great a burden for me since my partner was a Philippino Bridge Master, so I was usually dummy.

Andrew

[John Smith]

Lia,

I find myself in the same positition quite frequently. My prescription is described as "complex" which entitles me to free NHS eye tests and the voucher for ever-so-slightly cheaper specs.

My opticians though suggested a cheaper alternative as I was needing a new prescription quite frequently:

First, select a small pair of frames. The larger the frame, the more expensive the lens will be.

Second, don't buy a new frame every time. Just get the appropriate lens (you may well not need both lenses replacing every time) replaced in the existing frame.

This can in fact reduce what you have to pay by up to 75%

[Lynn White]

As an interesting aside, as an optom, it is often hard to get ANY contact lens wearer to purchase back up glasses as they are worn so little!

But yes, it is very true that glasses are often overlooked as an option for KC. There can be several reasons for this, including the fact that KC corneas can vary a lot, especially with RGP wear- that is, the cornea changes over time after the lens is removed and this can often alter the prescription of the glasses. Hign index (thinner) lenses do cost money and often optoms are reluctant to prescribe something expensive that you may not get used to or in fact, the prescription may well have changed by the time you get the glasses!

This sort of thing does need good discussion between optom and patient: the optom needs to realise that some vision is better than none and the KCer needs to understand what is and is not possible and what to expect. You really need to reassure the optom that you are not going to demand you money back because you can't see as much as you hoped in them! Also, adapting to the visual distortions caused by high prescription take a bit of getting used to and so a bit of patience is needed!

Ali's points about not booking in on a Saturday and telling the practice ahead of time you are keratoconic and may need more time are really useful.

John.. its not strictly true that larger lenses are more expensive. Larger lenses may need to be thinned to look better and THAT can be expensive. Small frames ARE better at reducing distortion and weight from the lenses though.

Costing through the NHS depend on what your prescription is and also whether you are on benefits. The NHS really does not cater for thinner lenses, so the price may depend on the level of technology in the lens.

Also-- do not forget the uses of pinhole glasses as an emergency measure! They may not look the best but they really can help - espcecially if your prescription is settling down (and therefore changing a lot) after a graft!

Lynn

[Lia Williams]

Lynn (and others)

Thank you for your comments.

I have to admit that my main reason for an eye test last Sunday was because I had an appointment at Moorfields today. As Moorfields do not do full eyetests I had expected to be asked when my last test was. (For the last few visits I have been reminded that I needed to get myself tested).

My current back up glasses are ten years old (the previous 20 I didn't have any) and i only got those because I was going to spend some time living in a dry climate. As I hadn't worn glasses for years it took sometime before I could I wear them walking around the house as my brain took ages to make vertical lines vertical.

The new glasses prescription is stonger (the previous one was backed off to cope with the fact that my eyes were not used to glasses) and I know that this increase in prescription will take some time to get used to.

My appointment went well at Moorfields - they polished both lenses and I then read the bottom line - with no errors! Amazing!
And they didn't remind me to have a full eye test.

Lia

[donna]

When I had my eye test and the optician spotted the KC she said that she would be unable to make the vision in my left eye any better than she could that day so gave me a prescription for glasses, what did she mean? Is my left eye so bad I need to go straight onto contact lenses? Why cant she just make me even stronger glasses?
I admit this is still all new to me so if that ^^ sounds like a daft question please forgive me!

[GarethB]

Donna,

Your optom may well mean that she can correct the regular astigmatism, but the irreguar astigmatism caused by the KC is too adavneced.

This might help explain; Why not spectacles?

Hope this helps.

[donna]

thanks Gareth. That explained it! So my bad eye is worse than I thought which explains why she seemed so concerned and surprised that I was walking around with no glasses on!