Is any help available?

[liphook]

Hi All

I have not been on here for ages, but recent events have moved me to return to the site to look around once again.

Ill keep this brief!

When i was 11 i was diagnosed with KC

Age 22 Had graft on right Eye

Age 26 Graft on Left Eye

Age 29 Refractive surgery on left eye

The right eye operation went well, still cant see unaided but with a lens on it ( glasses useless) i can see right to the bottom of the chart.

The left eye was stitched up badly after 1st operation and was left with a -21 astigmatism which the doctors tried to reverse with refractive surgery, however they still could not get any useful vision from the eye and i can only see the light on the eye chart, but no letters......because of the astigmatism i cant get a lens to fit the eye or glasses to correct vision.

For the last 8 years i have only had vision through the one eye, and now the doctor at St Pauls Liverpool wants me to have another graft on the left eye (first graft performed by useless ********** Hospital) he said that there are no other options left.

Now my problem is this, im self employed/ sole trader, when i had previous operations i lived with parents so was not a problem, but now im married with three children. Due to nature of my work, i was told to stay off work for 2 months previously for the eye to heal sufficiently.

My problem is that if i have the operation and am off 2 months again, i will cease trading for that period so will get no income, i can claim incapacity benefit and claim a whopping £55 a week but that wont even cover my family shopping bills, we have no savings as such and my wife is a housewife.

I am desperate for an operation, but circumstance dont permit it.

seems to be a catch 22............ Have op and family struggle financially - dont have op and struggle physically.

Anyone been in a similar situation? is there help out there that i dont know about?


look forward to your replies.

Kev

[Lynn White]

Kev

I understand your situation very well. Can I ask a few questions? Has anyone tried fitting any lens to the left eye? I ask because I recently fitted a KeraSoft to an eye with - 17 astigmatism. I am not sure it could go up to 21 but if you may be able to get part way there with a lens and then correct the rest with glasses. There may be other lenses that could work also.

Another point is that if you have had vision in one eye for 8 years - are you really that desperate to have it operated on? I know this may sound a bit negative - but literally thousands of people have little or no vision in one eye for various reasons and do adapt. Re-grafting does have its risks and it is by no means a guaranteed success. You say you struggle physically - are you having problems with lack of stereo vision?

Lynn

[liphook]

Hi Lynn

The refractive surgery reduced the astigmatism a lot but still a problem, the hospital have tried a few lenses, tried a standard lens to no avail, also one which had a hard centre and a soft outer, and i think a torrik? - it turns on the eye to try to find a fit,there were a few more but cant recall them now.

The specialist said that its not possible to correct both ways on the astigmatism.

Regarding the physical problems, my right eye is my only eye, i cant use glasses so have to keep lens in from morning to night, which causes problems in itself due to the hours i wear it.....but without it is not an option.

I had a lovely fit lens on the eye for years, but then all of a sudden it started hurting, the lens still sat perfect but for some reason i developed an intolerance to it, the only lens i can tolerate on the eye is a very flat fit, which stands of terribly and moves around a lot and is liable to flick off at times.

I suffer very sore eyes on a weekly basis, and many morning i awake and the right eye is just to sore to keep the lens in, for that reason im self employed as i can only just manage 2 days a week work, some weeks i only manage a day and then try three the next week....its so unpredictable.

Im not being a wimp when i say there sore, my specialist always tells me off because i try to wear the lens when its sore, but to me i have no other option, life stops when lens is out. The lens is in today but i cant guarantee if it will stay in in the morning, I would say that the lens is uncomfortable every day, but some days are more manageable than others.

The doctors in Liverpool want to try lasik on the right eye but wont touch it until the left eye is sorted out,

I have coped for 8 years because i have had to, its not much fun but its all i know, its just so frustrating knowing that an option is there but is just not viable.

[rosemary johnson]

Kev, sorry to say this, but this is ridiculous!
Ha anyone tried yu in a scleral lens?
If not, insist they do - and pronto.
If neceesary, get St Paul's to get onto Arrowe Park in Birkenhead and see who they send their scleral lens people to these days since Keith Nelson retired.
(WOuld be even better if you could get in touch with Keith Nelson himself.... in which case give him my best wishes.... but times move on.)
I think the eye people over the water are at Arrowe Park these days - was Clatterbridge in my day, and they cntracted out all the lens fitting to said RKN at an opticians' practice called Render Layfield in Hamilton Square.... no idea if it might be the same firm with new people....
Good luck.
In case you don't now - a scleral lens is made from the same RGP plastic as the corneal (8mm diameter) lenses but is much bigger - yes, we all have a fit when we first see them and wonder how anyone puts in something that big! It "touches" on the whites of the eyes, and arches clear right over the cornea, the "seam" from the graft, stitches, and all sorts of astigmatism and other irregularities, with a reservoir of tears between lens and eye surface than can fill in any odd shapes and adjust to changes.
If you can get on with one - some people can't, others of us swear by the things - you should find its able to correct a surprising amount!
My grafted eye is very short-sighted and markedly astigmatic, and can see nothing on a Snellen chart. Well, it can just about see there are letters there, but has not a clue what they are. THe day I got the new scleral lens for it, I was reading right tot he bottom - 6/5 vision, amazing. (The grafted eye now has other problems, but that's another thread!)
As regards the financial issues, I can only agree with you most heartfeltly! - I'm in the same boat bing self-employed. I thought I had enough savings to be able to cope with the expected time off and recovery. In the event my op went pear shaped (another,v ery long story!) and I haven't been well enough to practice since. I've been surviving n savings, odd bits of seasonal part time work and temping and cheeseparing (heating? wot's that???). And my mother offering to pay the chiropractor's bills to sort out the neck injury resulting from the graft op - another story too.
It is an issue that is of very real concern to us, the people concerned, but which the medics have not a clue about (I made a point of asking them, even though I didn't have much hope of a good answer).
If you do find a solution, to this one, please do let me know!
Rosemary

[rosemary johnson]

PS to the above:
I wrote the last post, meaning you should gt to try a scleral in your LEFT eye, but rereading your post, maybe it would help you right eye too. The edges are right under the eyelids, so it doesn't flick out and the edges don't rub as you blink.
ANother though I had was: has anyone ever suggested piggybacking in your right eye?
- that is, you put a soft (daily disposable, in my case) lens with no/minimal power and then the hard lens on top - so the hard lens is, as it were, sitting on a layer of rubber padding not directly on your eyeball.
It's not going to improve the vision much, but some people who've tried it find it improves the comfort and wearing time.
Good luck, and do keep us posted.
Rosemary

[liphook]

Hey Rosemary

Have tried piggybacking but was no good, also was told that the scleral are no good for left eye either.

Wrexham are trying a new scleral on right eye but it hurts to wear, problem is getting to see the specialist as the hospital control the appointments and i been waiting 4 months for a follow up.

Keith Nelson was a God!!!! lol saw him in Wrexham and never had problems with my lens, he always got a good comfy fit for me and used to take lots of time getting it right, but sadly he did retire and is now working his magic on the golf course.

[rosemary johnson]

Did they say WHY they thought a scleral would be no good for left eye?????
- if Keith said that (or Ken, dahn sarf now) I might believe them. Whoever said it may be right, but altogether too many people try to dismiss them out of hand.
SOrry to hear the other things didn't work out.
Rosemary

[Andrew MacLean]

I'm with Rosemary on this; demant to know 'why' they insist that the Scleral will be of no use. then insist on trying.

If it doesn't work out, you will know, but for many people the scleral has proven not just to be an effective lens of last resort, but they have been left wondering why it took so long for them to get to try the scleral. I suspect that the cost is a factor, but that is no reason why you are denied an opportunity to try a lens that may give you good sight and comfortable wear.

Andrew

[GarethB]

liphook,

I too recently became intolerant of RGP's but since being on antihistamines much of the tolerance has come back. I am being treated for dry eye.

Secondly changing lens type may help, the design of my RGP lenses has changed slightly since the ontolerance they have helped a lot and I have tried the K3 with great success.

What has the hospital done to investigate the lens intolerance?

[liphook]

liphook,

I too recently became intolerant of RGP's but since being on antihistamines much of the tolerance has come back. I am being treated for dry eye.

Secondly changing lens type may help, the design of my RGP lenses has changed slightly since the ontolerance they have helped a lot and I have tried the K3 with great success.

What has the hospital done to investigate the lens intolerance?

Not much really........

They just tried making new lens with different fit but still cant get a comfy one apart from this one that stands off, by comfy i dont mean slightly irritable i mean so sore that the lens has to come out after 3 hours wear.

I cant recall why they dismissed Sclerals on my left eye, but know that they did. i used to wear them on both eyes post grafts and they were great, preferred them to the micros infact, Trying a scleral on right eye now but as stated earlier, with appointments being so far apart due to hospitals incompetence its June when i last saw them and they gave me the lens to try and told me to come back in 2 weeks to see her............... take follow up slip to counter and they say they will send it out to me......4 months later and still not seen her again.

When i saw Keith Nelson it was perfect, if i had slightest problem i could call his receptionist and she would fit me in in his next clinic in the wrexham hospital( visited fortnightly), he told me he left because hospital took over the appointment making and that he wasnt happy with how they arranged it....I SEE WHY TOO