Hi All.
Guess im looking for some help and support. I was born with Optic Nerve Hypoplasia (malformed optic nerves) this has made me blind in one eye. Until i was diagnosed with KC my vision in my right eye was good and I led a normal life driving and doing all the things a young man should do.
At the ripe age of 29 i now find myself having been through 18 months of failed contact lens fittings. I now have nystagmus (involuntary eye shacking) due to my poor vision, and horrible light sensitivity. Visual accuity is around 6/30 and seems to be getting worse rapidly.
I get around the world using a white cane, and I do a menial job that I don't require sight for.
I want more from my life than I have got right now. I have exhausted the contact lens route (i think). Corneal graft may well not do me any good as I am told I may need contact lenses afterwards. I also feel given my circumstance a graft is not a risk I want to take.
My consultants telling me there is nothing wrong with me (other than i can't see of course!) Has any one else enountered this problem?
I need to get recognition of my condition. Hopefully with a view to get a viable treatment option. Or to convince my consultant that low vision registration is justified. Just so I can reopen the oppurtunities I had when I was sighted, and to start things affresh.
Any Suggestions or comments would be grate
Monocular and KC
Moderators: Anne Klepacz, John Smith, Sweet
- Drew Radcliffe
- Regular contributor
- Posts: 142
- Joined: Tue 30 Mar 2004 9:02 pm
- Keratoconus: Yes, I have KC
- Location: Cardiff
- John Smith
- Moderator
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- Joined: Thu 08 Jan 2004 12:48 am
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and spectacles
- Location: Sidcup, Kent
Re: Monocular and KC
Drew Radcliffe wrote:I have exhausted the contact lens route (i think). Corneal graft may well not do me any good as I am told I may need contact lenses afterwards.
Hi Drew,
Have you tried scleral lenses? They seem to be the current "last resort" for KCers, I seem to go from something like 3/60 to seeing the third line using a scleral in my KC eye.
I must admit that if I were blind in one eye, I'd be very reticent too about having a graft in the other one. Having said that, if you can physically tolerate a scleral but don't get good vision with it, then a graft could well be the last resort that you should be considering. I went for one on the grounds that I had very little useful sight to actually lose; but we're all different, and the decision should be yours and yours alone. Don't get bullied into an operation you don't want, but don't accept a lack of action from your practicioners either.
All the best, and keep in touch.
John
- Anna Mason
- Chatterbox
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- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: Gloucestershire
- Drew Radcliffe
- Regular contributor
- Posts: 142
- Joined: Tue 30 Mar 2004 9:02 pm
- Keratoconus: Yes, I have KC
- Location: Cardiff
I live and work in Gloucester City Center. Kinda handy as getting around isn't so fun.
Ive been reffered to the eye hospital at Southampton cos im 'quircky' I guess.
I don't have much time for my consultant though he seems to be spend most of his time doing feild tests and electroretinograms (ERG) trying to find my supposed feild losses to now avail.
I find that i loose half my field of vision in certain lighting like when the suns in the sky the bottom half of my field goes too dark to see bit like looking through a triangular prism.
Does anyone else get this when they cover up one of their eyes
Ive been reffered to the eye hospital at Southampton cos im 'quircky' I guess.
I don't have much time for my consultant though he seems to be spend most of his time doing feild tests and electroretinograms (ERG) trying to find my supposed feild losses to now avail.
I find that i loose half my field of vision in certain lighting like when the suns in the sky the bottom half of my field goes too dark to see bit like looking through a triangular prism.
Does anyone else get this when they cover up one of their eyes
- Drew Radcliffe
- Regular contributor
- Posts: 142
- Joined: Tue 30 Mar 2004 9:02 pm
- Keratoconus: Yes, I have KC
- Location: Cardiff
Good luck with it all Drew!
My left eye has developed a simliar condition over the past few months.
It started with my vision getting worse rapidly and now my left eye vision is constantly like the vision I used to get when I 'crossed; me eyes when messing around...the wind must have changed and it really has stayed like that!
To look at me my eye has no squnit but I have blind areas in the left eye field of vision with lamposts and roadsigns dissappering and then popping back into my vision as I pass them.
When I focus on anything close, eg a book everything in the background goes fully out of focus and when looking at distance anything close is very distorted where I can only make out shapes.
When a tv screen, computer monitor or flousescent tube light isin my peripihal (spl) vision it looks to be flickering, when I look directly at it alls seems fine....like looking down to type the monitor is flickering, look up again and all is well???
No consultant seems to guess this so I have resigned myself to living with it...aslong as it stabalises soon.
let me know how you get on drew..
Dave.
My left eye has developed a simliar condition over the past few months.
It started with my vision getting worse rapidly and now my left eye vision is constantly like the vision I used to get when I 'crossed; me eyes when messing around...the wind must have changed and it really has stayed like that!
To look at me my eye has no squnit but I have blind areas in the left eye field of vision with lamposts and roadsigns dissappering and then popping back into my vision as I pass them.
When I focus on anything close, eg a book everything in the background goes fully out of focus and when looking at distance anything close is very distorted where I can only make out shapes.
When a tv screen, computer monitor or flousescent tube light isin my peripihal (spl) vision it looks to be flickering, when I look directly at it alls seems fine....like looking down to type the monitor is flickering, look up again and all is well???
No consultant seems to guess this so I have resigned myself to living with it...aslong as it stabalises soon.
let me know how you get on drew..
Dave.
- Drew Radcliffe
- Regular contributor
- Posts: 142
- Joined: Tue 30 Mar 2004 9:02 pm
- Keratoconus: Yes, I have KC
- Location: Cardiff
Monocular and KC
Have finally been referred to moorfields who are now trying to fit me out with scleral.
This seams to be a six month process. On top of the 2 years its taken to get this far. How much longer.....
Social services have advised that a guide dog would be worth while. The guide dog people say I can have one and would benefit from it.
But I don't feel comfortable making use of such support if moorfields can fix me.
Im very lens intollerant and am scepitical that sclerals will be of much benefit, but still ready to give them a go.
What do you guys think ?
This seams to be a six month process. On top of the 2 years its taken to get this far. How much longer.....
Social services have advised that a guide dog would be worth while. The guide dog people say I can have one and would benefit from it.
But I don't feel comfortable making use of such support if moorfields can fix me.
Im very lens intollerant and am scepitical that sclerals will be of much benefit, but still ready to give them a go.
What do you guys think ?
- paula hardman
- Contributor
- Posts: 44
- Joined: Fri 07 May 2004 7:21 am
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
hi Drew
were you getting useful vision with the contacts when you managed to wear them? If you did then lenses like intacs migt be an option - these are inserted into the cornea and left until the prescription changes. There's been the odd discussion about these here but I don't think anyones admitted to having any yet!
were you getting useful vision with the contacts when you managed to wear them? If you did then lenses like intacs migt be an option - these are inserted into the cornea and left until the prescription changes. There's been the odd discussion about these here but I don't think anyones admitted to having any yet!
- Drew Radcliffe
- Regular contributor
- Posts: 142
- Joined: Tue 30 Mar 2004 9:02 pm
- Keratoconus: Yes, I have KC
- Location: Cardiff
Monocular and KC
Corneal lenses give good levels of acuity. Their draw back for me is the momentary instabilities that occur when the lenses rotate, lift or generally move around. That small half second period leaves me totally blind as I only see from one eye. This short period of no vision sets off an attack of nystagmus. (involuntary eye movment /they jerk left to right as if they are in spasm). Im then off on a journey of total visual loss. Its a degenerating circle of I blink. lens moves, vision goes, eyes jerk, lens moves........
Sclerals are of course more stable, so their is still hope that ill get some of the day with sight.
I feel at this stage that intacs are not viable enough for me. They'd probably do the trick. I don't like the concept of putting in a foreign body in my eye. Im uncomfortable that they would need changing when my prescription changed. They're too new for someone in my position to consider given there's insufficient data on the causes of failures and the nature of the majority outcome for an invasive technic, publicly available to make an informed decision.
Sclerals are of course more stable, so their is still hope that ill get some of the day with sight.
I feel at this stage that intacs are not viable enough for me. They'd probably do the trick. I don't like the concept of putting in a foreign body in my eye. Im uncomfortable that they would need changing when my prescription changed. They're too new for someone in my position to consider given there's insufficient data on the causes of failures and the nature of the majority outcome for an invasive technic, publicly available to make an informed decision.
- Susan Mason
- Forum Stalwart
- Posts: 414
- Joined: Sat 24 Jan 2004 11:27 pm
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: Bolton Lancashire
Hello Drew
You seem to be having a rough ride at the moment and yes it does seem in certain areas getting lenses take ages.
As a bit of positive news for you I too was found to be very RGP corneal lens intollerant and after approx 9 months of various lenses being tried I was fitted for sclerals. After the initial shock of being wrapped up in a yellow plastic apron and having the lenses shoved in my eye I was surprised at how something so big did not cause any pain/irritation. On the down side it was then 6 months before I actually got the lenses (had to see someone for a second opinion and then wait for them to be made, also it was end of budget year time at my local hospital) and then I had to send them back again for another 4 weeks to have the prescription changed as it wasn't quite right.
Fingers crossed they will help you and if nothing else give you some time before you need to consider more invasive procedures.
best wishes
Susan
You seem to be having a rough ride at the moment and yes it does seem in certain areas getting lenses take ages.
As a bit of positive news for you I too was found to be very RGP corneal lens intollerant and after approx 9 months of various lenses being tried I was fitted for sclerals. After the initial shock of being wrapped up in a yellow plastic apron and having the lenses shoved in my eye I was surprised at how something so big did not cause any pain/irritation. On the down side it was then 6 months before I actually got the lenses (had to see someone for a second opinion and then wait for them to be made, also it was end of budget year time at my local hospital) and then I had to send them back again for another 4 weeks to have the prescription changed as it wasn't quite right.
Fingers crossed they will help you and if nothing else give you some time before you need to consider more invasive procedures.
best wishes
Susan
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