Quicktopic posts: Mar 2004

[Rosie]

Hi,

I'm really struggling with my lenses! After months of attending the hospital too finally perfect the prescription I've been left to my own devices to get used to wearing them. However I spend so much time away from the office or in meetings when I am there, that I've fallen into the trap of wearing my specs all day. Although my vision isn't great in them, it allows me to concentrate on my job and not on watering eyes, and wanting to scratch my eyes out, because the lenses are so uncomfortable! As such my tolerance levels have reduced dramatically and I'm so fed up. I come home with sore eyes and the thought of putting the RPG lenses is unbearable...I really appreciate all the work the hospital has done to give me lenses that improve my sight so much. I feel awful that I'm not putting the effort I should into persevering with them, I really want to, but the prospect of 'starting over' has left me demotivated.

Does any one have any tips of easing the transition from specs to lenses?

Rosie

[Nadia]

Hi Guys,

I have just been diagnosed of KC today. My left eye is in pretty bad shape while my right eye is still ok. I am feeling a bit uneasy, scared, angry and possibly even depressed about this. As i am sure most of you have experienced, to find out that you have a permanent and progressive disability is not nice.

I do not know anyone else who suffers from KC and from where i am (Malaysia)there doesn't seem to be a support group for it. I would find it reassuring to be able to talk to other KC patients. I've read the literature on KC but i can't help thinking, what if i am the 10% who needs a corneal transplant.

According to the doctor, i ve got moderate KC on left eye and v mild one on the right. How fast would it progress from moderate to high or how long before it stabilises?
I am 29 now...i reckon i ve had it for abt 3 to 4 years already. I started to notice that i couldn't really see v well at night abt 2 years ago. It seems to have gotten worse recently, and thats why i had my eyes checked.

I got my eyes fitted for contacts today as well. I have never worn glasses or contact lenses before, so it should be fun to try and put them on hmmm.

Any words of advice would be appreciated.

Thank you.

[Andrew]

Desperate !!!

I go into hospital on Friday (5th) March to have my left eye grafted, I had my right eye grafted in 1990 and my vision is pretty much 20/20 with the use of a lens.

I had a hard time recovering from my earlier graft and found work difficult due to the initial poor vision, I know this was corrected later but it was nearly a year before I could get back to normal.

My surgeon has told me there is no alternative, he says if I leave it any longer he would find it difficult to carry out the corneal graft so my hands seem tied.

The thing is, I really can't afford the time off work having so many commitments and working for myself I have been finding it difficult to accept the ultimatum of this operation, especially when my vision is very good at present.

Can any one reassure me that the operation technique has improved since my last graft, enabling a faster recovery.

Appreciate any comments

Andrew

[cha]

I had my corneal graft on my left eye at the age of 17. This operation was performed by Mr N.S.C Rice at the Moorfields Hospital. Two years later the grafted eye developed astigmatism and I had to undego further corrective surgery done by Dr. Steele at Wellignton Humana.
Three years later the graft developed a rejection process and i had to undergo intense treatment with an injection and drops. Fortunately, the symptoms were brought under control. I had to undergo another correction to reduce the astigmatism further. I was unable to wear a contact lens for about a year.
I am now 39 and have not had any problems with my graft in the past. I rely on a gas permeable lens for a good vision. However, I am concerened about depending on contact lenses for the rest of my life. What if i develop a catarak with this corneal condition ?

[cha]

Rosie,
I have empathise with you. I have been wearing contact lenses for 24 years and I still remember vividly the struggle i used to undergo to put these "Pieces" on and then "keep them on".
The first thing you have to check is the type of lens you are using. The comfort depends on the amount of Oxygen that is suppplied to the eye through the lens - hence permeability. Gas permeable lenses are upto 45% pearmeable. DK lenses are much more comfortable but are more expensive.
The second factor to bear in mind is the amount of protein deposits on the lenses. If lenses are not soaked regularly with protein remover the deposits tend to reduce the comfort levels. Consult your doctor and optician for advice. So don't worry. You will make it - GOOD LUCK!!
CHA

[John Smith]

I had a corneal graft a couple of years ago, and I've had a couple of rejection episodes, both successfully reversed with steroid drops.

You can imagine then, how I felt when I woke up this morning. I put my glasses on as usual, but still couldn't see. Unfortunately, I am pretty much blind in my other eye without a scleral lens in, so I couldn't tell if the grafted eye was red. There was no undue sensitivity to light, and not really any pain to speak of (but a slightly odd sensation when I blinked). So as per R.S.V.P., I had at least one and possibly two so I duly presented myself to the local eye casualty.

I seemed to be a bit of an oddity. Everyone had heard of KC, but opinion was divided as to whether I was suffering from a rejection or an infection. My consultant was summoned, and I was asked to return this afternoon.

The consultant confirmed that I'm suffering another "mild" rejection, and I'm now back on 2-hourly FML drops. Oh well, that's life.

It does underline the RSVP message though - present yourself to casualty if you have any of the 4 symptoms, don't wait until you have all 4.

John

[Dave D]

Hi Folks,

Since I have been getting no joy with my hospital recently and confused messages on funding for contact lenses through the NHS i have called in a favour I am owed from the fromer health secertary, my towns MP Mr Milburn and have a meeting with him on Thursday this week.

I was wondering if anyone has a deinitive information on the cost of their lenses through the NHS. I have info. stating that some hospitals have paid teh full cost for lenses whulst others have said about paying £42 per lens through the NHS?

Thanks in advance,

Dave D.

[Paul Bines]

Andrew,
Speaking purely from personal experience, things HAVE improved since 1990! I had a graft done around then (perhaps a little later) and I was off work for two months. In the last 18 months, I've had two more grafts done, and in each case I was off work for no more than a couple of weeks, and the vision was improved more or less from the moment the bandage came off (though this is obviously dependent on your operation)
Au Res.,
Paul
http://www.efbenson.co.uk/
http://www.paulbines.co.uk
http://www.convergent-diversity.co.uk/

[Pete]

Craig, I was advised by the specialist I was seeing in Cambridge to wear the soft lenses as my eyes are quite sensitive and he felt that i would not be comfortable with the harder lenses. Since wearing the last lenses i recieved (in December) my vision seems to be worse, I don't know whether it is a progression of the keratoconus in my eyes or just a 'bad' lens??? My father is a GP and has refferred me to Mr Larkin at Moorfields. I went to see him a couple of years ago to get a second opinion on having a corneal graft- he said my condition was not bad enough to warrant the risk. I have an appointment with him on Wednesday. I am hoping that he will be a bit more clear on whether a change of lenses is required, beacause at the moment my vision is very tempermental. As i said before, if i am to continue with my hopes of employment I will need more stable vision....just hoping the last few years of study aren't gonna prove to be a waste..

[Mike Oliver]

So far as the cost of contact lens through the NHS is concerned, my understanding is lens can be prescribed and the charge is (I think) currently £44 per lens - I'm sure someone will correct the precise figure if I have it wrong. This is presumably subject to the lens(es) being considered medically necessary, although that must almost invariably be the case for us. Sadly, in some areas those doing the prescribing seem unaware of this.Problems also arise with spare lens. Plainly the fact that someone relies on their lens to work and lead, so far as possible, a normal life ought to make having a spare - in the event of loss or damage - essential. However it rarely seems to work like that and spares are more commonly regarded as a luxury to be paid for in full. Be interesting other views and experience from around the country.