UK Keratoconus Self-Help and Support Association

Hi Folks,
Finally I have been able to login.

I am in need of some advice please.

Just to re cap: I had intacs inserted into the right corena 2008, then had one removed as two seem to do the job too much. MOst of the time things were ok with contact lenses and spectacles but I still wasnt able to drive in the dark due to haloes and poor night time vision.

I plodded along with this until I heard about SK INTACS. My consultant and I agreed this was the next step to take. The old intac was removed nov 2011 and SK intacs inserted Jan 9th 2012 and this is my current situation:

The procedure went as planned. In the days that followed I was extremely sensitive to daylight, blurred and but on my ifrst check up 16 days after the operation, the intacs had moved from their original position and inflammation was present. The lower intac was in a position close to where the original intacs were and this area was thin - making hte intac close to the surface. The immediate concern was infection and extrusion. I was given antibiotic drops, and stopped with the steriod drops. I have attended clinc every week since and a few weeks ago my consultant was so concerend that he thought that removal was necessary - as my vision was very poor, extremely sensitive to light, and the healing process was very slow. However he suggested that we take a second opinion from a consultant in sheffield before we went ahead and made another incision. Unfortunately that consultant was on holiday but he did speak to another consultant in Leicester who suggested that we continue to give it more time if I was prepared to hold out. This is what we have done and also am being referred to the consultant in sheffield for a second opinion.My vision is still poort - right eye 6/36 and left 6/27. I am still very sensitive to light and have soreness and fatigue.

Has anyone else had sk intacs inserted and what was the result?

Also my gp has been asked to complete a esa 113 to support my esa claim...he knows very little about my condition.

thanks

Hita - I'm really interested to see what answers you get on this question re. Benefits. I shojldn't moan - I'm lucky and have a good job but I had to stop driving 7 years ago due to KC. Vision has continued to deteriorate, had 1 cornea graft and now Kereatotomy on worst eye and can just about see the number of fingers test at 8-12 inches from my face. Others eye is better than that but all a bit relative. Done Access to Work but transport is biggest problem - big rural county with poor buses and trains in few towns... had always hoped for a bit of help with transport but consultant says not impaired enough - not being able to legally drive is not a criteria! Any advice welcome... I'm the chap with a telescope squinting at overhead display screens or trying to squint at numbers on the front of buses!!!

In the current climate, where the whole emphasis is on how many people can be denied benefits, the advice has to be (as James said in his recent newsletter article on applying for DLA) to get expert help. Charities like Action for Blind People have advisors on benefits, so contacting the nearest branch or a local society for the blind and partially sighted should produce helpful advice.
Jez, when Employment Advisers from AFBP talked to us about Access to Work at our 2011 conference, they mentioned help with transport as one of the things A to W could help with. Though again, with cutbacks everywhere, that may be one of the things that has gone by the board. Worth checking out though.
Alison, I'm afraid I don't know anything about SK Intacs, but I hope that, between them, all your specialists will find a solution for you. All the best
Anne

Access to Work is a joke now and people have found it to be time limited, this is another reason why we need changes to visual registration to include KC be that temporary/permanent and to take in account fluctuating condition and fluctuating ability to use lenses, then this assist getting more help in/out of work by at least recognising there are needs.

Anne Klepacz wrote:In the current climate, where the whole emphasis is on how many people can be denied benefits, the advice has to be (as James said in his recent newsletter article on applying for DLA) to get expert help. Charities like Action for Blind People have advisors on benefits, so contacting the nearest branch or a local society for the blind and partially sighted should produce helpful advice.
Jez, when Employment Advisers from AFBP talked to us about Access to Work at our 2011 conference, they mentioned help with transport as one of the things A to W could help with. Though again, with cutbacks everywhere, that may be one of the things that has gone by the board. Worth checking out though.
Alison, I'm afraid I don't know anything about SK Intacs, but I hope that, between them, all your specialists will find a solution for you. All the best
Anne

Many thanks Anne - I have assessor from RNIB for A2W coming next week so I'll chat to them when they come. I just wondered if anyone got any sort of assistance or benefits when they have KC, can't drive etc. I look on here at people's comments and realise I am a lot further down the road in terms of severity than some - I remember well the halo's at night when driving but it's the pits when you can't drive at all!!!

I wouldn't be able to drive for other reasons - but if I could I would have enough corrected vision in one eye - however with it being corrected with an RGP, the slightest grit under it is blindingly painful, I'd cause a crash on a motorway if that happened and I can't predict it, yet just going on corrected vision in one eye I'd be deemed visually capable despite these episodes several times a week. I'd be a danger on the road yet if I were determined I could get a license. How can that be right?