Hey guys need some advice.

[Tehmoe]

I'm a 21 year old living in London and I found out I had KC just before I started university at the age of 18. I was told I was at stage 4-5/10 and 8 being the stage were I should need some store of surgical procedure to correct my eyes. Anyways Since then My optician I had some some Hard lenses and It was in come cases worse than before. After 2 months or so I went back and tried to explain to him how everything for the most part was clearly but at the same time it had alot of blurriness going on and alot of light reflection.

Since Then I moved and that optician was just to far to visit. Since then I've been really busy with university and having now finished I wanted to get my eyes checked and hopefully get a better pair of contacts. So I was wondering were I should go, my parents recommend I go to specsavers but I'm not sure if there the best for my eyes. Also I'm currently on Job seekers so was thinking I might be able to get some of the cost covered by the NHS.

Anyways thanks for any advice guys, just really confused on what to do and not really anyone else with this condition so no one to talk with.

[Andrew MacLean]

Hey Tehmoe, welcome to the forum.

In your place I'd ask for a referral to a good hospital ophthalmology clinic. They will look at your eyes, and probably refer you to an in-house contact lens clinic. There you will meet opticians who are very experienced at fitting the right lens to eyes with keratoconus.

The cost per lens at an NHS clinic is £52.50.

Every good wish.

Andrew

[Anne Klepacz]

Hi Tehmoe and welcome to the forum,
Most of us get our lenses through a hospital eye clinic which is where most of the expertise on KC is (few high st optoms come across people with KC and have little experience of fitting specialist lenses, although there are exceptions). So your best bet is to ask your GP to refer you to a hospital (if you're in London then Moorfields is the obvious choice as they see more KC than any other hospital in the UK!) You'll then get lenses at NHS prices and if you're on benefit then they might even be free. Good luck
Anne

[Tehmoe]

Hey Tehmoe, welcome to the forum.

In your place I'd ask for a referral to a good hospital ophthalmology clinic. They will look at your eyes, and probably refer you to an in-house contact lens clinic. There you will meet opticians who are very experienced at fitting the right lens to eyes with keratoconus.

The cost per lens at an NHS clinic is £52.50.

Every good wish.

Andrew

Thanks alot for such a fast reply. Will I just spoke to my Mom and she has already booked an appointment with the local spec savers. I will let you know what happens and I will also ask them if it is possible to refer me to a hospital ophthalmology clinic.

Thanks alot Andrew.

[Andrew MacLean]

Each of us chooses our own optometrist, but even if you do decide to have your lenses from a high street optometrist instead of a hospital clinic I'd still recommend that you ask your GP for an ophthalmological referral. Your ophthalmologist will talk to you about various options for treatment and management of your condition.

There are now do many different lens materials and lens types that you should be sure to ask any optician about their knowledge and experience of fitting lenses to eyes with KC.

Every good wish.

Andrew

[Tehmoe]

Thanks for all the advice Anne and Andrew, Ive spoken to my Mom some more now ill be visiting my local GP this week. I will keep you all posted and thanks again really helps having people who have been through all this before .

[Tehmoe]

Hi all, since my original post I have went through my GP to Moorefield, I have had a few tests and finally got my rgp contact lenses 2 weeks ago. I must say at first it was a real struggle, I found putting them on to be very easy surprisingly, however after that it was a world of pain, after a few days this has improved. However now I just have moments of random and very sharp pain that occurs only in my right (weaker) eye. The lenses has also increased my light sensitivity to the point that I find it difficult to open my eyes at all in sunlight. I have also noticed that my eyes are almost always dry and sticky with these lenses in. Finally the most worrying part for me is that when I remove my contacts my vision is so bad that I can't notice my own reflection in the mirror ( 1-2 feet) in front of me and this tends to take 2 hours before my vision slowly returns to normal.

I know that I have only been using the lenses for 2 weeks, and apart from that my vision is amazing, mostly in my right eye that I couldn’t make out any letter on the eye chart.

Finally I have an appointment on the 5th to decide whether I need a CxL or not.

[Andrew MacLean]

Thanks for the update.

Quite a lot of the people on the forum see both eye doctors and optometrists at
Moorfields. You can have every confidence going there; unlike many high street optometrists they have a great deal of experience of dealing with keratoconic eyes.

Every good wish.

Andrew.

[Tehmoe]

So its been over a month and these Lenses are hell, I really cant take them at all, my eyes start to get very painful after 1 hour or so, but if I remove the lenses then my vision is just useless for at least 2 hours, then it slowly goes back to my normal (bad) vision. The problem is my eyes just cant take the lenses, light is just a huge problem now, they hurt, they water, they get sticky, and after 3-4 hours they start to get red which really worries me, but if I dont wear the lenses then I get a lot of eye strain and non stop headaches, so it seems I'm screw either way.

Right now I try to wear my lenses only at work, so I get to work and get my morning meetings out of the way, then pop them in at around 10:30, and removed them at 6pm. It is rather painful keeping them in for so long, but my vision without them means I cant really work, then I try to survive the rest of the day without my lenses which can be difficult as I even straggle to see my phone screen properly at times.

I have called moorefield up a few times and finally managed to move my appointment forward to the 29th, and I will try to ask to try on some Kerasoft lenses, which seems to have been really good for a lot of people on this forum.

I have 2 questions;

1) How much do these kerasoft lenses cost, I'm working full time now so I will have to pay for them
2) is it worth paying for another set of lenses again so closely to just paying for my RGP lenses, just seems like a waste, but they really are not working at all so I guess I have to.

[GarethB]

Any lens provided by the NHS will cost the same so £54.20 regardless of the lens, it is the NHS that may pay more. The only time you would pay more for lenses is if they have to be replaced more frequently unless it is due to a prescription change.

Therefore if you had the Kerasoft 3 monthly disposable, every six month you may have to pay £54.20 per eye, so effectivly paying twice what you would for a pair fo RGP lenses. Most people have the Kerasoft IC that is replaced annually so the cost to you would be same as you pay now on the NHS for RGP lenses.

If you are having new lenses so quick due to a medical need, many hospitals make no charge and at this stage you don't know if your eyes have changed in which case it may be considered a prescription change and so no charge for a change of lenses.

Unfortuantly each hospital interprest the guidelines differently, I know some hospitals that will give a free replacement of lenses if you were to loose one where as others will charge everytime for a lost or replacemnet lens because you want a psare set.

From what you describe, it sounds to me that the RGP lenses aren't fitting correctly or that you are having a reactin to the RGP material. RGP is a generic term and the plastic material used in different lenses can suit some better than others. RGP as you know just stands for Rigid Gas Permeable of which a number of plastics used in contact lens manufacture will fall in to this category.

Just as a soft contact lenses predominantly are silicon hydrogels, each manufacturere uses a slightly different material and as mentioned there Kerasoft IC lens is available in two type of hydrogel but are both referred to as soft lenses.

I don't know which hospital you go to, but I have known hospitals essentially tell patients that if they can only see for a couple of hours then get used to it, some people aren't so lucky. It wasn't until I could only wear my lenses for an hour per day (2 max) and having a couple days break from them each week that I eventually went over to the soft lenses. I've been using Kerasoft IC for 4 years now and I am still very pleased with them