Lenses driving me mad. What next??

[brianyoung69]

Hi all.

I have had KC since i was 15 and have been pretty much fine with RGP lenses.

Lately, they were becoming more of an irritation and were not really giving me the vision I had had in the past.

I was referred via the hospital to a specialist optician. I treid about 6 (seriously) different Rose-K lenses, but the vision i got from them was just awful. They also got really dirty in my eye and were unwearable.

He put me back on normal GP lens but increased the strength to try and improve the vision. I could see futher, but suffered from really bad double vision around my peripheral vision that was just unbearable.

He gave a me a new lens exactly the same as my last 'good' prescription.

Its same as before, but I can't see that great in my right eye (where i have the KC) and the lens becomes very uncomfortable later in the day to the extent I want to claw my eye out. In addition, as the strength is not that good, I am getting eye strain and headaches.

I am thinkinig of Intacs as my vision without my lens is ok - my good eye makes up for the dud one, but eventually I get headaches. I don't wear my lens in the evening or at weekends, and get on fine with that.

I don't know if this would be suitable (I am thinking of going back to the hospital to ask)

Does anyone have any pointers or next steps??

Ta

[Andrew MacLean]

Hello brianyoung69, welcome to the forum.

Many of us have been through the stage of needing to change lens types.

Has your optometrist never suggested lenses like the Scleral? Have you ever tried any of the new soft lenses for keratoconus?

Life is hard when you are going through the stages of advancing keratoconus. One thing that I discovered was that by keeping my eye hydrated I could improve my lens wear each day: this meant drinking lots of water, (I understand that taking linseed oil can help) and I use artificial tears. I think that your optometrist may be able to offer advice on keeping your eyes well lubricated.

In the meantime ask specific questions about different lens types. The RoseK is a good lens, I had one for some time and found it comfortable until my eye just would not accept it any more. There are other lenses available: Kerasoft 3 is one of the new soft lenses for KC, there are hybrid lenses (soft skirt around an rgp centre) there are piggy back lenses (rgp on top of a soft under-lens), there are scleral lenses (large rigid lenses that are large enough to vault over the cornea.

by all means go back to your ophthalmology clinic and ask about other options, but if you are able to cope with lenses you may be able to delay any other interventions.

Every good wish

Andrew

[brianyoung69]

Update:

I returned to my optician and we decided to re-try with the Rose K again.

Its not too great. I am still getting some degree of doubling of vision.

I am going to go back in a few weeks to see him. Does anyone in the know think this could be a fitting issue??

(PS he suggested the soft keratoconus lenses would not be suitable, and I didn't even mention Scleral lenses as they scare me!!)

Thanks

[Lizb]

I was also told that soft KC lenses wouldnt suit me, but ended at the end of the line trying all the others my fitter has in stock she tried me with one of the Kerasoft lenses in my bad eye. From memory it was reasonably comfortable with better than driving standard vision (i could get most of the 2nd to bottom line on the chart, though did have some clarity issues - that may have been aggravated by my dry eye).

I am currently out of CL altogether due to very bad dry eye but i was hopeful that the kerasoft would work for me, though the fitter said it wouldnt suit me initially. Like you i have one good eye and one dud eye.

I know that there are others on here that, i am sure will tell their own story, but have been told that no soft lenses would give them the vision and having tried the kerasoft lenses are getting very good vision from the.

It is very personal to each of us, and trying to find a good comfortable fit with good vision is a very fine balancing act.

[Lynn White]

Hi Brian,

With all due respect to people saying this or that lens won't work, you really don't know until you try. And if someone is that not expert in fitting a type of lens, it may be difficult to get excellent results straight away, as in the area of specialty contact lenses, it is essential to be very familiar with a lens type and how it fits.

Many people think soft lenses are just for mild to moderate keratoconus, but I - and many other fitters - manage to get really good vision for patients even with advanced keratoconus. I fit the KeraSoft lens and others get good results with Acuity or Soflex, or in the US, with Flexlens. In fact, with most of the patients wearing RGPS that I have refitted with soft in the last few weeks they have got better vision in soft lenses than they had in RGPs. And all of those were told by previous fitters that soft lenses would not work.

Soft lenses have the benefit of comfortable wear for long periods of time. With newer materials, like Silicone Hydrogel, wearing time can be up to 18 hours without compromising the health of the eye.

Even if you did not go to soft, there is SoClear and Synergeyes. Both of these latter also require a fair amount of familiarity with lenses to get a good result.

I would explore ALL contact lens options before taking a step along the surgical route.

If your local hospital refuses to try other lens types, then seek a private opinion (there is a list of KC friendly optoms here )and if you find you can be fitted with something else, then ask to be supplied with it through the hospital. Or of course, you could carry on with a private solution - depends on your finances!

If you want to find a practitioner near you that does KeraSoft, pm or email me.

Lynnn

[brianyoung69]

Thanks very much for your replies guys.

I will take on board what both of you have said.

Lynn, I was referred by the Hospital to one of the 'KC Friendly' Optometrists on the list. There seems to be some resistance to try anything other than the Rose K. If that doesn't work, 'well the RGP will just need to do for now'.

He did say that we could try everything going, but felt it would be a waste of time. I do not want to tell him how to do his job, he is the expert afterall, but i will be insisting that we try sometging else as I am not really willing to just make do with the best we can get from the RGP.

I don't feel the Rose K is going to work. The double vision around the periphery of my vision is not a problem outdoors in broad daylight. Inside however, is a different matter. As soon as there are more sources of light, it becomes much more noticeable and I work in an office with lights all over the place so its pretty bad and my good eye is going mad trying to make up for the difference.

I will be insisting on a new approach. Dont get me wrong, they have been great, and we have tried about 10 different lenses now (Rose K and RGP only though) with no success.

Lynn, I will say I have spoke to 'another Opto' and will mention what you have said about your success with Kerasoft. Gotta be worth a try.

Will keep yous posted.

Thanks again!

[GarethB]

I was told soft lenses would not work but the hospiat has admitted theyw ere wrong after I got a set and turned up at the hospital wearing them, then they admitted they were wrong.

My fear with optoms insisting on RGP lenses is that if the patiernt is feeling irritation then perhaps scaring may result and potentially exclude a patient from CXL or intacs because of cornealscaring which could have been avoided if they tried one of the other types of RGP lenses, Scleral or soft. These people must be leaving themseleves open to negligence claims if someone decides to take action against a lens fitter who refused to consider an alternative and that is their livlihood on the line.

[MartinC]

I was also told that soft lenses would not work! Apparantly he'd tried them once, several years ago, and they were no good! He is also on the list of KC friendly Optoms.
Second opinion might be an option?

[GarethB]

The silicone hydrogel soft lenses I think have only been out for about 18 months, prior to that I think they were in development so quite possibly a case overworked hospital optoms have yet to catch up with what is on the market now.

[brianyoung69]

Yay!

I am trying Kerasoft on Thursday.

OPto says there might be an issue as I have been wearing RGP for years (only about half the time mind you).

Fingers crossed.

Will let y'all know

Bri