RGP QUESTIONS

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KIRST
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RGP QUESTIONS

Postby KIRST » Fri 12 Aug 2011 9:32 pm

Hi everyone,

I have been trying to get used to RGP lenses for about 6 weeks now and am struggling a bit.

I attended the eye clinic at the hospital in May 2011 and was diagnosed with KC in both eyes and advised to try RGP lenses.

I was then referred back to my optom (specsavers) for fitting.

The difficulty I am experiencing apart from the discomfort is:

1. Right eye cloudy more or less from first wear. I have tried taking lens out, cleaning and reinserting but it always ends up cloudy again!!
2. Eyes feel very itchy and just want to scratch them out, especially after wear.

I ahve asked optom if there is anything else I could try but they have stated that they are not 'experienced' enough with KC and that the only thing they presribe is RGPs. Other than that they would refer me to a more independant optician.

What I am wondering is is it wirth my while persevering with the lenses? and will this gradually get better over time? I am aware RGPs can take a while to get used to and if I didn't have these problems I would happily wear them for the time being as the vision I get it great - almost 20/20!!

Also, I see from your posts that a lot of you use other methods to help with wear i.e. eye drops etc. This has never been explained to me by optom.

I have explained that the lens is cloudy but she never really gave me much of an explanation for this. So should I chnage to a more experienced opticians ven if I continue with RGPs more for the aftercare than anything else??

Sorry for so many questions. I feel a bt in limbo.

I am going back to eye clinic on 23 Aug 2011 but when I said to optom I would discuss my options with the doc there, she told me he wouldn't be able to advise me on lens wear!!!

delboy
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Re: RGP QUESTIONS

Postby delboy » Sat 13 Aug 2011 8:09 am

Hi Kirst,
This forum is a great ‘marketplace’ for experienced discussion and advice, so don't panic! trust me you will get a decent solution with lenses. Most high street opticians don't cater for KC so it is advisable to get a practice or NHS clinic with KC knowledge/experience. There are lens options and you need to discuss this when you go to the clinic. where are you in the country? is the clinic local to you? :) Also, if your lenses are un bearable and you’ve been trying since May with them it sounds like they are not right,so don't force wear time. good to talk!
Derek

KIRST
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Re: RGP QUESTIONS

Postby KIRST » Sat 13 Aug 2011 12:05 pm

Thanks for your reply Derek,

I have only been trying the lenses since June but the optom had told me it can take from 6mths to a year to adjust to them so assumed this is normal??

I live in Ayrshire, Scotland and my local eye clinic is based at Ayr Hospital which isn't far. However, they do not deal with lens fitting etc there, just contract it out to the opticians. Hence the inexperienced optoms!!

The nearest 'proper' eye clinic is Gartnaval Hospital in Glasgow (about 35miles away) and I am unsure whether I would be able to be referred there for appointments. Will ask on my next visit to Ayr.

I wouldn't mind the travel if I was getting the best treatment. Unfortunatley, like many of us I cannot afford to go private so will have to stick with the NHS.

I'll have to really have a wee think as to my next move.

Thanks again

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Andrew MacLean
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Re: RGP QUESTIONS

Postby Andrew MacLean » Sat 13 Aug 2011 12:24 pm

I'd certainly say it was worth while asking for a referral to Gartnavel. They offer an excellent service.

Andrew
Andrew MacLean

gill501
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Re: RGP QUESTIONS

Postby gill501 » Sun 21 Aug 2011 8:37 pm

Kirst, I'm from Ayr and some of the things you said in your post above rang true with me too.
Been trying to get used to RGP lenses for 5 weeks now and not doing too well. I've also found the Optometrist not particularly helpful with the condition and trying to support me, giving me the impression that her practise is possibly not that experienced either! (I wonder if we have the same Optometrist?!) I have found the information on this forum and also on the Facebook group more helpful that both the optometrist and the consultant since I was diagnosed. For instance I did not know that there are other lenses other than RGP and Piggy Back which are the only ones I feel the op is willing to let me try.
I am currently reading up on the Rose K lens in order to discuss with my consultant.
I'd be interested to hear how you get on asking about another referral to Gartnavel, from what I have read on here, they seem to be the best in Scotland to deal with Keratoconus. I know I'd be happy to travel there if I knew I would get more support.
Inside this body lies that of a skinny lady.... But I can usually shut her up with chocolate!

luke
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Re: RGP QUESTIONS

Postby luke » Mon 22 Aug 2011 7:19 am

I think it is certainly worth finding opthamologists and opticians/optometrists that specialise in keratoconus and are prepared to take the time to problem solve.

In addition to the initial period of adjusting to rgp lenses.
Discomfort, cloudiness etc from rgp lenses could result from a myriad of factors such as;

*how well the lenses are fitted
* dry eye
* allergies
*lens cleaning regime

At times managing keratoconus can require considerable perseverance from keratoconics, and that perseverance may be misguided if you do not receive appropriate support and advice from health care workers.

How would you feel if you accepted the itching, constantly rubbed your eyes and tolerated discomfort of lens wear only to be told a few years down the track the lenses are uncomfortable due to a poor fit and the rubbing of eyes (resulting from itchy eyes, which could have easily been treated) is most likely the cause of further progression of your keratoconus?

kitty kat
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Re: RGP QUESTIONS

Postby kitty kat » Sat 17 Sep 2011 8:58 am

Not been on for a while so trying to catch up on posts, so sorry for this being delayed.

I live in north ayrshire and attend ayr hospital. A few years ago my sons eyes deteriorated very bad and the optom we were attending suggested a transferal to gartnaval but consultant at ayr said no cause we live in the wrong health service, said for us to stay at ayr and advised us with optom with KC experience, optom has been very good with jordan as he has tried may lenses with him over the years, he now has contacts that he can see with, has comfort with and can put in himself. It has taken time for this to happen and i thought at one time it would never happen.

Best of luck, youre welcome to pm me Gill501 and Kirst

kat

KIRST
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Keratoconus: Yes, I have KC
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Re: RGP QUESTIONS

Postby KIRST » Mon 19 Sep 2011 8:51 pm

Hi guys,

so sorry - hadn't noticed there had been more replies to my previous post here so apologies again for delay!!

gill501 - just a wee udate for you. I didn't ask for a referral to gartnaval in the end up, i actually managed to find an optom locally, who has over 30 patients with KC!!! apparently they accept the most hospital referrals - was a bit mad that consultant didn't tell me this at first visit.

So, I booked an ppointment with them and got specsavers to transfer my stuff there. Told consultant that I had transferred and he said yes they are very good and he was very familiar with them!!! eh, hello - why didn't you mention this earlier.

anyway, I have now been to what I can only describe as the best eye test I have ever had. The optom explained everything about the condition, he also told me about all the different contacts they have (think they are about 5 or so including rose K lenses).

He is going to try piggy back lenses so will let you know how I get on with them.
a
The opticians is called Kilgour Optometrists (they have a website also). There is a branch in Dalblair Road - down near health centre and also one in Troon. TeL: 01292 267293

I would highly reccommend them - makes a difference when you with someone who knows what they are dealing with. I actually work in Troon so have been going there and makes a different for me as can go when at work so saves with extra travel as I live in tarbolton.

Thanks also for the info kittykat re gartnaval. Glad your son has got a good opticians now too

Kirst xx

dalbeath
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Re: RGP QUESTIONS

Postby dalbeath » Tue 20 Sep 2011 9:08 am

Who is your consultant? I have been seeing Mr Srinivasan (despite living over 2 hours from Ayr) and I think he is brilliant. He's very nice, explains things well and listens - something the Edinburgh Eye Pavillion seem hard to do!!

KIRST
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Keratoconus: Yes, I have KC
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Re: RGP QUESTIONS

Postby KIRST » Tue 20 Sep 2011 2:57 pm

Hi dalbeath,

my consultant is Dr Sriinivassan also. I have only been to the hospital twice since being diagnosed but I have felt he has been a bit dismissive. Hopefully - it's only because he doesn't have anything further to tell me yet - wants to look at all my prev eye tests before he goes into any detail.

However, I did contact via email re CXL and he got back to me straight away to say he would look at my file and get back to me and he is def doing that as we speak.

Kirst


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