UK Keratoconus Self-Help and Support Association

Ok as some of you know from previous post I have had a cornea transplant to right eye a couple of months ago, which is doing fine, but not yet giving me useful vision. So... working at getting my left eye better vision!

My left eye has KC, snowflake cataract, Intac, blephitis

I am currently on my 4th contact lens this year and was really excited that this was the one that would give me back normal vision (hospital said it was good fit and correct prescription - giving 6/9 vision) The reality is very very disappointing. The problems I have are:

Double/Ghost vision is still present same as it is with glasses or no correction
Severe distortion & Blurring of left-hand side and lower (looking towards feet) vision
Glare or flashing bright lights intermitently mainly from left side of vision
Lens gets 'stuck' or slips down to lower eye lid sometimes when I blink, either have to repeatedly blink to restore vision or manually re-adjust lens
After 4-6 hours of wear my eye is sticky with mucus which usually gets under the lens and clouds vision resulting in me removing. (this has Improved from the 1-2 hrs before I was given catacrom drops 4x daily)
It is uncomfortable and sometimes painful and watery.

I think some of the problems may be due to the Intac. I have 1 intac which is positioned 5-10 o'clock (hope that makes sense) which is where the vision problems with a contact lens are. I havent yet been able to wear long enough to see what vision is like at night.

The lens is from No7 I think it is either Qasar or KeraKone, both were mentioned but not sure which it is.

The left eye was being considered for transplant before the right failed, but I really dont want to go for another surgery right now, my vision is so low right now I have been offered a white stick (refusing that so far), yet I still hope something will work.

Does anyone have an idea what I should do or ask for next?

As someone who has been using a white stick since the summer and was incredibly cautious and resistant, I can't praise the fact I gave in and admited I needed one enough. The independance I have gained is fantastic, today for example I walked into town , went to do some shopping then got the bus home. No way on earth a year ago I would have had the confidence to do so alone.

You are not simply given a white stick and that is that, I initally had a symbol cane which if honest was pointless, I then bravely refered myself to social services for mobility training and assesment which is when I gained the long cane. Had 8 sessions of training once a week for a few hours and then allowed to take it home.

Yes some days I wish I could throw it in the bin, but the majority of the time it is such a empowering thing and so glad I swallowed my pride to ask for one.

PM me if you want to chat.

Lea x

I am afraid I don't have any suggestions re the contact lens. However, I am another white cane user so I thought I would add my comments to Lea's.
I have been really struggling with keeping my vision at a functional level for years. As part of that I have had tow transplants, 12 months and two years previosuly. These were unsuccessful. I was totally dependent on other people until I got a cane 6 months ago.

It was terribly hard admitting/accepting I needed but since learning to use one my horizons have expanded, my independance has been 90% restored and my confidence has grown enormously.

I have actually been pleasantly surprised how the cane has made life easier for me. It feels like a weight has dropped offf my shoulders. Life is not such a struggle now.

I call my cane The Liberator because it has had such a positive impact on my life.

good luck with everything Helen

sorry about spelling mistakes. I am struggling to use the computer tonight

I used a white cane while my sight was very poor. I found it difficult at first, but when I had the hang of it life was very much easier.

Andrew

I dont feel ready to give up on my vision My son is sick and if I could drive and be independent it would make a huge difference to the family. I need to see sooner than 1-2 yrs that my right eye will take to recover.

I had an assessment by social services who offered home help which i dont want or need, and day care (because I am classed as social isolated) I am still in my 30s and dont think OAP lunch club is suitable.
They sent a Vista person (charity similar to RNIB) who did some simple adaptations to appliances, so I can now use them, they going to loan me a CCTV magnifier and another handheld one to try. They offered to supply a long cane that I can use to check where curbs etc are, I want my vision not a stick. The hospital wont register me partially sighted as I have 6/9 vision corrected in my left eye (with the lens i describe in my first post) - takes me alot of guesses, head movements and blinks to get to that line, also wont consider as I am ongoing treatment, ie my vision impairment isnt permanant.

I feel like the past 2 years are in limbo, I am not partially sighted but not normally sighted, some days I think it would be easier to stop trying to fix my vision and learn to live with it as it is... every treatment brings a hope of success which turns to disappointment when it fails.

I am trying flaxseed oil & heat pad on my eyes as suggested by optoms, got some clinitas to try and make eyes more comfortable, today arrived blephasol - hoping will keep my eyelids clearer than saline.

I haven't tried scleral's or hybrid lenses, I dont know if they are available or suitable. Can I just ask for different lenses at the hospital?

I don't blame you not wanting to give up on your vision.

Being able to drive and the independance and freedom that comes with driving is immeasurable.

Is it possible to take a bit from both 'wrolds'? Could you do things like accept some assistance while still battling to improve your vision?

While you cannot drive, is it possible to have help with transport from social services or Vista (the charity you mention)?

And the same regarding the white cane; could you use it while your transplant is healing and you are trying to get a better lens fit?

Afterall, you can always throw the cane away and cancel any assistance if and when your vision improves.

Definitely push for trying different lenses. Sclerals are great. I had to push too try one in my better eye and it prolonged functional vision for me for 12 months. Piggybacking (rigid over soft is another option that works for many hard-to-fit eyes).

Transplants can take a long time to give you any functional vision. I think I have some very recent improvement in the eye that was transplanted 2 years ago yet the opthomologist gave up on it months ago.

Hi Helen,
I really find it hard to understand the reluctance of some consultants to register people in situations like yours as partially sighted on the grounds that the problems are temporary. Two years or more may be 'temporary' but it's a long time out of anyone's life. Others on this forum have been registered while they've had problems and then been taken off the register once the problems are solved. At least you have been offered help from social services and from Vista despite the lack of registration - but for others it has meant not having access to help. It's a topic that I hope we'll talk about more at our conference in June.
Meantime, do ask about other lenses. If the problem is due to the Intac, scleral lenses could be the answer, as they vault over the cornea.
All the best
Anne

Hi Helen

Sorry to hear that things are not going well for you at the moment, I too seem to be back down in a hole for the moment however, felt I should comment as I did get registered after seeing the right person.

For many years I battled with 'if we can correct it, even if its only for a couple of hours we wouldn't class you as partially sighted' to finally being registered back in Feb 2010. For me it hasn't done much as I am too stubborn to give in to the stupid condition and again whilst I have a symbol cane I usually hide it up my sleeve and hold onto someone. Luckily for me my little boy is now 14 well and whilst cheeky at times doesn't seem to mind helping me out, although he is not keen on buses! Tells me he is learning to drive as buses are not for him! (think I have raised a snob).

PM me if you want to know more or try to look at my other posts to get an idea where I am up to. Not sure what area of the country you are in however, feel sclerals should be tried for you. For me they worked ok initially and whilst the 6 hours a day I got seems nothing much when it is 6 hours or nothing sometimes it is still a vast improvement.

Susan x

I never gave up on my vision, and was happy when I was able to come of the register of blind people. But, for the time that I needed help, it was good to know that it was there for me.

Andrew