contact lenses

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danieljdavies
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Keratoconus: Yes, I have KC

contact lenses

Postby danieljdavies » Wed 14 Mar 2012 10:32 am

hi all,

I just need some advice regarding contacts. I have always had problems with the fitting of contacts, and have never been successfull in trials. They either slip off my eyes, or the vision is very poor etc. My optician at the hospital has given me about 5 or 6 different types of lenses and sizes but none have worked. The closest we came was when I tried the GPL (i think they might have been hybrid??). My left eye (the worst of the two ) took well to the contact and worked fine, however my good eye (right eye) didnt work, which was very disappointing. My last trial was for a small hard lens, which didnt work at all.

My optician has told me there is nothing I can do and I have to stick with glasses, however glasses arent brilliant, and I also do certain activities which prohibit the use of glasses, such as sport and work.

I dont think my optician is an expert in this department, so im just wondering do I have any other options?

thanks

Dan

longhoc
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Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: contact lenses

Postby longhoc » Wed 14 Mar 2012 2:13 pm

Hi Dan

You know, sometimes, just when you think you've heard it all, along comes someone with a post which makes you so stunned at the way a person with Keratoconus has been "treated" (I use the word in jest because really, you weren't).

"My optician has told me there is nothing I can do and I have to stick with glasses". What utter tosh. One wonders what you would have been told if you'd been hard-of-hearing and they couldn't get a hearing aid which fitted... perhaps the same diligent clinical approach would have led to your being advised to tell the person you couldn't hear to shout a bit louder.

Okay, calm down Chris (sorry, it makes me very annoyed when I learn things like this are still happening. And in fairness to the person you dealt with in the hospital, on occasions they don't get all the information they need -- which isn't our fault, incidentally, it is only that we don't know what our options are and what to say/ask when we're there.)

Bit complicated the next steps, lots of questions to ask if I may:

1) Does the optometrist in the hospital specialise (or is familiar with) fitting lenses for Keratoconus patients ? If not they are simply being an enthusiastic amateur however good their intentions. Optometry for a Keratoconic cornea is not a trivial task and requires a substantial level of training and, crucially, real-world experience over and above being able to dish out your basic daily disposables. It you don't want to ask them (and I wouldn't -- it's so embarrassing and you shouldn't have to, but maybe you're braver than I am) then are you okay to travel a little and go to a different hospital ? If so, let us know your rough geographical location -- but please don't name your current hospital, it's unfair to them as they don't have an easy right of reply -- and someone will be able to suggest an alternative where they get a good service. What you'll then have to do is go back to your GP in Primary Care and ask to be referred to a different centre. You have every right to do this and your GP has to, unless it is completely unreasonable, refer you to where you'd like to go.

2) Not an easy one for the patient to answer especially if it isn't explained properly what you've been prescribed, but do you know which lens types you've tried ? Are they ordinary RGPs (c. 5~7mm diameter, completely hard, feel like thin plastic) or more specialist types such as RoseK (look them same as ordinary RGPs but which are designed to make fitting for a Keratoconic cornea easier) ? And that other type you think was a hybrid, did it have a hard middle bit and squishy edge ? Or was it a soft lens sitting under a hard lens (i.e. two entirely different components you put in one after the other) ? Reason I ask is that you might be a good candidate for soft lenses for Keratoconus, I just want to try and find out if you'd tried these already.

3) Do you know if your Keratoconus is progressing i.e. it gets worse each time you go for a check or has phases where it gets a little worse, stops for a while then starts getting worse again ? The hospital would need to take measurements of your eye to determine this. If they lack the equipment to scan your eyes accurately, they can't tell. This is one of the most important aspects of Keratoconus care so a) they should be equipped to do it and b) they should be telling you what's going on.

4) It seems like you've seen an optometrist (they look after the lenses) but have you in, say, the last 12~24 months seen an ophthalmologist ? They provide care for the eye itself, and can advise if they think you might need different therapeutic approaches other than lenses.

Best wishes

Chris

danieljdavies
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Keratoconus: Yes, I have KC

Re: contact lenses

Postby danieljdavies » Wed 14 Mar 2012 5:26 pm

hi chris
i have inboxed you

cheers
Dan

munster
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Posts: 117
Joined: Sat 29 Oct 2011 7:23 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: contact lenses

Postby munster » Thu 15 Mar 2012 9:18 am

I got referred to my lens fitter from my consultant.

Apparently, he is the best KC lens fitter in the Northwest of England. He specialises in KC, and assisted in the creation of the Kerasoft lens.

He deffo doesn't give up, and knows his way around the eye. I would seek a new lens fitter.

danieljdavies
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Joined: Mon 31 Jan 2011 11:14 am
Keratoconus: Yes, I have KC

Re: contact lenses

Postby danieljdavies » Thu 15 Mar 2012 10:02 am

cheers

contact lens specialist do you see?


thanks

Dan

liam82
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Keratoconus: Yes, I have KC
Vision: I'm coping with no aids

Re: contact lenses

Postby liam82 » Thu 15 Mar 2012 6:17 pm

Im in a similar position. Ive got a kerasoft lens for my left eye, but the vision with it in isnt very good and my optician says its as good as its gonna get :(

I dunno what else to do. Ive had crosslinking done, and was really hoping to just get a lens that worked.

Its bloody depressing. All i want to do is play my xbox!

munster
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Posts: 117
Joined: Sat 29 Oct 2011 7:23 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: contact lenses

Postby munster » Fri 16 Mar 2012 4:09 pm

danieljdavies wrote:cheers

contact lens specialist do you see?


thanks

Dan


I see Mr David Price in Prescot. He's the contact lens specialist on the St Helens and Knowsley NHS list.

He's on the team list here http://www.sthk.nhs.uk/pages/Departments.aspx?iPageId=1346

munster
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Posts: 117
Joined: Sat 29 Oct 2011 7:23 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: contact lenses

Postby munster » Fri 16 Mar 2012 4:19 pm

liam82 wrote:Im in a similar position. Ive got a kerasoft lens for my left eye, but the vision with it in isnt very good and my optician says its as good as its gonna get :(

I dunno what else to do. Ive had crosslinking done, and was really hoping to just get a lens that worked.

Its bloody depressing. All i want to do is play my xbox!


I have Kerasoft lenses in both my eyes. I have KC in both eyes, left about mild and right more advanced. I am left eye dominate. I have notice more ghosting from this latest Kerasoft in my left. I'm due back to the lens fitter on Wednesday to fit me with piggy backs. He ordered a RGP for my left, with a daily below it. I'm not holding out much hope. Every time I've tried anything involving RGPs I get more ghosting :(

The latest reviews of Intacs by users here is starting to put me off. Also my lens fitter doesn't really rate Intacs. He says they have an effect of like cutting off the top of a volcano. Or flattening the top of the corneal protrusion, making lens fitting more difficult.

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Lia Williams
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Re: contact lenses

Postby Lia Williams » Sun 18 Mar 2012 6:16 pm

Munster,

There are lots of different RGPs. Hopefully they will be able to find one that doesn't cause ghosting. I've found that if there is only ghosting in one eye the brain can ignore it, it's when it is in both eyes it can be annoying! Good Luck for Wednesday.


Daniel,

I've just read through your other posts and see that you have cross linking in one eye. I hope that this has now settled down.

I can't believe that they can't fit your eyes with contact lenses (I was going to reply to you initial post in this thread but Chris beat me to it with one of his great detailed responses). You say that you do certain activities that prohibit the use of glasses - even if you couldn't get better vision with contact lenses (which I doubt) I would have thought that even some fairly standard soft lenses would give vision equal to, if not better than, glasses.

Do let us know how you get on,

Lia


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