Frustrated

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dish789
Newbie
Newbie
Posts: 4
Joined: Sat 12 Jan 2013 6:50 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Frustrated

Postby dish789 » Fri 01 Mar 2013 6:55 pm

Hello,

I'm after some advice about KC and CXL.

Basically i was diagnosed with KC in September after my optician refered me this time last year. I have a lazy/weak left eye so i rely heavily on my right eye.

I have been going back and fore the hospital for contact lens fitting and didn't really get anywhere. The opthmologist found it difficult to get me a fitting and i found it give me double vision/severe ghosting. He said this was because my cone didn't match the back of the eye and was irregular. Even though they were uncomfortable i would have stuck with with had they given me good vision. I decided to try Kerasoft but unfortunatley vision is blurry with these. I wear glasses to get by but i am even finding them at the moment.

I am now at my ends tether and dont know what to do. My confidence is totaly shattered and i find evry day a struggle. I can get by indoors (as long as i am away from windows) but outside i really struggle and i don't think it will be long before i have to give up driving.

I am due to see the NHS consultant in march but when i rang today they said that they are running behind and it could be may before i see him.

The way i feel at the moment is that i am trapped and i want to have CXL to stop the progression and possibly make my eyes better or enable contact lens wear but i want to speak to the consultant for advice.

I have booked an appointment with the optician next week and i am hoping they can adjust my glasses as i feel when i frown then i can get a bit better vision but this is a big hope. I am also thinking of going private to get some sound advice as i feel a bit isolated and angry.

can anybody answer the following questions:

1. Do i need to see my consultant before i look into CXL?
2. Is there anywhere someone can recommend for this treatment? I live in Swansea
3.If i go private will i lose the NHS support
4.How much will this cost in one eye roughly?

Sorry i have so many questions but my head is really spinning at the moment. I am going on holidays in 3 weeks to america and i should be looking forward to it but i am anxious about my sight.

Any help or advice is appreciated

Many thanks
Paul

James_Ldn
Regular contributor
Regular contributor
Posts: 67
Joined: Sat 29 Sep 2012 11:20 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Frustrated

Postby James_Ldn » Sat 02 Mar 2013 9:42 pm

Hi Paul,

I would certainly look into cross-linking if your eyesight is continuing to get worse.

1) Yes, you need to see a consultant beforehand who can assess your keratoconus first and advise if cxl is appropriate. You can do this with a private consultant though if you wish.

2) I don't live anywhere near Swansea, so can't help with that I'm afraid!

3) You shouldn't lose your NHS support if you go private - they should be parallel with each other.

4) The price varies, but you can get it for as cheap as £1000 per eye depending on where you go.

From my experience, I had to go private for both cxl (because it wasn't available on the NHS at the time) and for contact lenses (was taking too long on the NHS). It's unfortunate, but it gets too frustrating having to rely on the NHS sometimes.

dish789
Newbie
Newbie
Posts: 4
Joined: Sat 12 Jan 2013 6:50 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Frustrated

Postby dish789 » Mon 04 Mar 2013 10:18 pm

Thanks James

Im willing to travel to wherever really so will discuss recomendations with him.

Really nervous about taking this step but i don't feel i have a choice. Im trying to stay positive.

Thanks for taking the time to reply

Paul

Kris
Contributor
Contributor
Posts: 14
Joined: Fri 09 Nov 2012 11:18 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Frustrated

Postby Kris » Wed 06 Mar 2013 4:31 pm

Hey Paul,

I am in a similar place to you, having been diagnosed last year and struggling with the contact lens fit. I am on my second pair and they still don't work correctly. I am being told that my cornea is not cone shaped, but wavy/bumpy, so more difficult to fit as well. The CL specialist can only see me every 2 months, making it a very slow process.

Besides going to the CL consultant, I was meant to go back to the general ophthalmology clinic to get other options besides lenses about 4 months ago and I still haven't got an appointment (despite my repeated requests and follow-ups).

I have now spoken to my GP and she will be referring me to Moorfields Eye Hospital in London, where I hope to get better advice and care than where I currently am. Maybe that would also be an option for you, to get referred to a hospital that might be more specialised or has shorter waiting times? It is part of the NHS Choices scheme, your GP should be able to give you more advice and information what might be possible. http://www.nhs.uk/choiceintheNHS/Yourch ... pital.aspx

I am also considering going private, at least for an initial assessment to get a second opinion - it can't hurt!

So I just wanted to say I understand how trapped and frustrated you feel (I can only drive short distances and have had to change jobs and reduce my hours because of my KC) and how welcome a solution would be. Hang in there, explore all the options out there, private and NHS and just keep at it, there will be a solution for you!

All the Best,

Kris

dish789
Newbie
Newbie
Posts: 4
Joined: Sat 12 Jan 2013 6:50 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Frustrated

Postby dish789 » Mon 11 Mar 2013 8:52 pm

Hi Chris,

Many thanks for your reply. Sounds like you are really frustrated too.

The appoinments with the opthamologist haven't really been a problem and have been quite frequent. The issue has been that he can't get me decent sight with any of the lenses which he tried.

I'm due to see the NHS consultant in the next 2 months for a follow up appoinment so going to discuss CXL with him and ask for recommended specialists to have this done..

Hopefully the CXL gives me the ability to be able to get decent sight with lenses again but who knows hey.

Good luck with your continued effort and hope all works out for you

Thanks
Paul


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