UK Keratoconus Self-Help and Support Association

Hello Peeps,

What to do?

I began attending the hosp eye clinic five years ago to be fitted with lenses for KC.

The first optometrist I saw kept insisting that I persevere with a lens that made my eyes water, and I couldn't bear it at all, never mind for 30 minutes.
BUT I kept persevering because she was the professional...she knew best, right?

Well, eventually she went off on maternity leave and I thought "phew". To boot, the ophthalmologist told me I was allergic to the lens.

Anyway, the pregnant optom was replaced by another optician who still insisted that I persevere with the lens. This went on for three more years, in which time I had very little motivation to wear the darn things...but I built up to about 3 hours wearing time. Plucked up the courage to ask this more receptive optician if there was another type of lens I could try, and was greeted with open arms. She got me an Aquasil lens, bless her, which I managed to WEAR for 6-8 hours for several months ...until I became allergic to that one, according to the ophthalmologist, and then I was told: make up your mind: it's either no lens, or a graft.

Then up popped the first optometrist, back from her matty leave almost 4 years later. And she has fitted me with a PMMA lens which fits alright, but steams up and fuzzes. So far it's tolerable.
But she's mean and won't listen to me.

I've already asked the receptionists in the eye clinic if I can see the other optician, so I have continuity. It's a pain, as I've been with the same optician for years and she knows my case very well. She's still in the department-I've seen her. I've been told it's HER clinic.

So why am I being handed over to another optician? Without treading on toes, how do I go about ditching the meanie? Do I have to go through my GP and go on another waiting list for another hospital, or is there someone I can talk to in the eye clinic (quietly)?

...And is there anything better than a PMMA lens that I might tolerate (v. sensitive eyes, eczema, allergies etc)?

Nothing like a good dilemma for a Saturday afternoon!?!

BL

Does the "old" Optician recognise you? Did you get on with her? If i was in your position, Id either go there on a sep day and speak with the Admin Staff / or I would approach her direct....via a call to the centre.

What kind of vision do you achieve with the PMMA lenses? Have you tried other ones?....What are your thoughts on graft?....I think it IS good that you have avoided the Graft and you have had people encourage you NOT to take that route.....but maybe you may want to now weigh up your options against your current circumstance?

May also be worthwhile speaking with you GP to obtain his views?

Hope that helps

J

Hi there,
You've certainly raised some interesting points...one of which being the rapport with the "good" optician.
I always thought I got on quite well with her, and she was helpful...to the point of actually taking me round to the ophthalmologist herself when I was in the middle of a crisis.
I don't know what the politics of that department are, exactly, or whether she's having to now share her clinic with this "old" colleague whether she likes it or not.
I did notice, though, that at my last appointment the corridor of the eye clinic, which is usually
chock-a-block, all-go, was almost empty...

BusyLizz

I'd say you need to take control. Insist that you see the optometrist with whom you got on better.

Ask to see your ophthalmologist to discuss other options.

there is no reason why you need to be the victim of the conveneience of the nhs.

the receptionist is probably the wrong one to whom to speak about optometrists, but the department must have a head. Speak or srite to her (or him)

they are your eyes.

Andrew

I agree with Andrew - take control. It's your eyes, your vision, and your pain if the lens in uncomfortable. Get something that works for you and leave others to sort out corns on others peoples' toes.

But you just mentioned you had got PMMA lenses - where did they come from??
Someone on another thread is desperately hunting for a source for them and can't find a supplier!
Are these corneal (9mm diameter) or scleral (21-24mm diameter)?

Rosemary

Rosemary,
In response to your query regarding the origin of my PMMA contact lenses, they came from Scotlens in Linlithgow, Scotland. They are 9mm diameter (i.e. NOT sclerals).
The main drawback with them is that they don't "breathe" as no oxygen seems to get through, which means quite a bit of condensation. Also, I need to use a protein remover tablet for the lens once a week, which I've never needed to do with RGPs in the past. But, so far they're better tolerated than my previous lens....

Thanks for this source information...I have always worn PMMA lenses and an now struggling to source a supplier (as it my specialist) as I need them without any silicone as I appear to be allergic to it..so I'll give this a whirl...many thanks

There's a lot of confusion here.PMMA, for those who dont know, is perspex and is not oxygen permeble and hence, in my opinion, has no place in modern contact lens practice. The thing about allergy is that patients get an allergic reaction to the build up of their own protein on the lenses, NOT to the lenses themselves.Gas permeable lenses are polymers usually containing some PMMA, some silicone and other bits and pieces. Silicone can sometimes encourage more protein build on the lenses which is usually worse for lenses with high oxygen transmission.But, there's a big range of materials on the market, and it's usually possible to find one that works without reverting to the bad old PMMA.It's also important for susceptible patients to use a good daily surfactant cleaner and protein remover tablets (Amiclair are good) to keep the lenses as clean as possible.Some patients need to use Opticrom eye drops indefinitely to control the allergic reaction and this usually doesnt cause any problems.

Ali thinks PMMA has no place in modern contact lens practice:

Well..... from Tina problems in finding a source, it would seem you aren't the only one!
For someone for whom they work well, though, and for whom RGP materials give problems, they clearly do have a place in KC management.

I can't sspeak for corneal lenses, but as regards sclerals, there is also a factor that PMMA lenses have a different surface characteristic from RGP materials and this can affect the fitting, comfort, vision balance. My PMM sclerals used to fit very closely - ie. with large contacat zones - that apparently went against what all the text books said! - but that gave me by far the best combination of visionand comfort.
It's only in the last 18 months that MEH have finally managed to find anything better from my right eye than the PMMA scleral (with to air holes) I've had since about 1979! - and that means piggybacking, and in fact the vision still isn't too hot and reading is hard work.
I am now seriously wondering whether a new PMMA scleral with similar contact zone based on an up-to-date moulding might not actually do at least as well a job - and without the problem of having run out of soft lenses to piggy back with, and MEH can't get me any more because they can't decide whether they have to get me to pay for them or not! - but that's another story.

As regards cleaning - i know people vary enormously in their tear/goo production and their tolerances/allergic reaactions, so maybe I'm lucky, but I never had to clean my PMMA sclerals more than once every so often (as opposed to before putting them in every time for RGPs) - in general with the PMMA ones I only used to clean them when i noticed they were getting a bit sticky, and washing up liquid was always perfectly fine for that.
Rosemary

Rosemary
My comments were only for corneal lenses not sclerals.Unfortunately in contact lens work,the most comfortable lens isnt necessarily the best one for you!One reason PMMA lenses can be very comfortable is that long term corneal hypoxia(lack of oxygen) greatly reduces the corneal sensitivity and hence you cant feel them! The fact that the endothelium slowly packs up and your corneas get cloudy and vascularised is an added bonus!

I can only offer my opinion based on current scientific knlowledge.