I'm due to have a full thickness graft to my right eye on 8th May. I chose a surgeon who believes in early lens fitting and is prepared to fit contacts 3 motnhs post graft. Does anyone have any experience of this? I can't stop myself thinking about the upcoming surgery and trying to work out all the possible outcomes. I would be very pleased to hear from anyone who has gone through a similar experience.
Thanks,
Rob
Early lens fitting after graft
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Andrew MacLean
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Re: Early lens fitting after graft
robcm
I think that there was one member in the United States who had his sutures removed very early and then had a lens fitted. I'll try to find his posts and then edit this one if I find anything.
Andrew
I think that there was one member in the United States who had his sutures removed very early and then had a lens fitted. I'll try to find his posts and then edit this one if I find anything.
Andrew
Andrew MacLean
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rosemary johnson
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Re: Early lens fitting after graft
Rub,
I know about this in theory, though watch this space for actual outcome...
Remind me: which hospital is this, and which surgeon?
Also, are you aware of what type of lenses is intended?
I know that the famed and renowned Ken Pullum, aka Mr Scleral Lenses, has a project going for early fitting of sclerals after grafts, sometimes as early as 3 months post-graft. I don't know where else this is in operation, though some of the Moorfields surgeons are working with him on this.
I have an appointment with Ken for a routine scleral lens checkup, which just so happened (!) to be 3 months post graft and he's more-or-less champing at the bit to get to fitting a new scleral over my graft.
SO we will have to see what happens on that one.....
The proble in my case is going to be not the technical merit of the plan, but whether, in view of my rather unfortunate experiences surrounding the op, I feel up to fitting a new lens over a graft that still feels like total anathema to me. SO we will see. Or not, as the case may be.
In general terms....
....... one might have glasses over a graft from very early days, or contact lenses from a quite early stage. The trouble is, hile the graft is still settling down, the eye is still changing shape and hence the prescription and/or lens fit is changing quite fast, so you could be needing news glasses/lenses every few weeks, and that gets mighty expensive!
The advantage of fitting early sclerals over a graft is that the scleral touches on the white parts of the eye, well outside the grafted bit, and fits well clear of the graft, the seam, etc, with a reservoir of tears, so there is scope for the eye to change shape under the scleral lens, and the lens still fits fine, just because the tear reservoir is a bit bigger or smaller or whatever. SO you don't need a new scleral anything like so often.
(As far as I can make out, it would be quite possible to get a scleral over a graft that makes you a tad long-sighted - then if you need to go out to somewhere like Asda's every month for a new pair of their 2 pounds 50 cheapo reading glasses, that won't break the bank.]
As regards stitches - you don't need stitches out to start putting lenses - or at least, scleral lenses - over a graft. In fact, apparently my new consultant (not the one who did my graft, but the one I've been changed to since, long story) apparently often doesn't take stitches out at all - they stay in permanently so long as they aren't actually a problem.
Scleral lenses are the big ones - about the size of a 2p bit, though obviously curved not flat - and the ones everyone says "HUH?!?!?!?!?" when they first see them and think they'll never be able to put one of those in their eye. But some of us find them comfortable and practical - and they don't fall/flick/blow out, and the edges won't catch on the seam round the edge of the graft.
I've always worn sclerals - well, ever since I was first diagnosed with KC, aged about 14 - and frankly wouldn't want to have to start wearing anything else now.
I suppose there would always be a risk with putting any sort of lens in one's eye soon after surgery of getting an infection into the eye with the lens, or of abrasion, soreness from overwear, or similar setting of a rejection. The other side to that is the advantages of getting (more) useable eyesight sooner.
And, in my case, easing the load on the ungrafted eye, which is complaining and looking rather horribly red and sore, from having to have a lens in every day (I used to alternate them).
I don't know anything about putting corneal lenses (the iris sized ones), nor soft, Kerasoft, or any other type of lenses soon after a graft. AIUI, the problem would be that you might need new ones so often as the eye changed shape that the price would get prohibitive, and the lens fitting, trial, ordering, etc processes would catch up with the changes inthe eye shape, so by the time you had a new lens it was out of date already. But maybe there are advances I'm not aware of there.
Do ask lots and lots of questions!
Rosemary
I know about this in theory, though watch this space for actual outcome...
Remind me: which hospital is this, and which surgeon?
Also, are you aware of what type of lenses is intended?
I know that the famed and renowned Ken Pullum, aka Mr Scleral Lenses, has a project going for early fitting of sclerals after grafts, sometimes as early as 3 months post-graft. I don't know where else this is in operation, though some of the Moorfields surgeons are working with him on this.
I have an appointment with Ken for a routine scleral lens checkup, which just so happened (!) to be 3 months post graft and he's more-or-less champing at the bit to get to fitting a new scleral over my graft.
SO we will have to see what happens on that one.....
The proble in my case is going to be not the technical merit of the plan, but whether, in view of my rather unfortunate experiences surrounding the op, I feel up to fitting a new lens over a graft that still feels like total anathema to me. SO we will see. Or not, as the case may be.
In general terms....
....... one might have glasses over a graft from very early days, or contact lenses from a quite early stage. The trouble is, hile the graft is still settling down, the eye is still changing shape and hence the prescription and/or lens fit is changing quite fast, so you could be needing news glasses/lenses every few weeks, and that gets mighty expensive!
The advantage of fitting early sclerals over a graft is that the scleral touches on the white parts of the eye, well outside the grafted bit, and fits well clear of the graft, the seam, etc, with a reservoir of tears, so there is scope for the eye to change shape under the scleral lens, and the lens still fits fine, just because the tear reservoir is a bit bigger or smaller or whatever. SO you don't need a new scleral anything like so often.
(As far as I can make out, it would be quite possible to get a scleral over a graft that makes you a tad long-sighted - then if you need to go out to somewhere like Asda's every month for a new pair of their 2 pounds 50 cheapo reading glasses, that won't break the bank.]
As regards stitches - you don't need stitches out to start putting lenses - or at least, scleral lenses - over a graft. In fact, apparently my new consultant (not the one who did my graft, but the one I've been changed to since, long story) apparently often doesn't take stitches out at all - they stay in permanently so long as they aren't actually a problem.
Scleral lenses are the big ones - about the size of a 2p bit, though obviously curved not flat - and the ones everyone says "HUH?!?!?!?!?" when they first see them and think they'll never be able to put one of those in their eye. But some of us find them comfortable and practical - and they don't fall/flick/blow out, and the edges won't catch on the seam round the edge of the graft.
I've always worn sclerals - well, ever since I was first diagnosed with KC, aged about 14 - and frankly wouldn't want to have to start wearing anything else now.
I suppose there would always be a risk with putting any sort of lens in one's eye soon after surgery of getting an infection into the eye with the lens, or of abrasion, soreness from overwear, or similar setting of a rejection. The other side to that is the advantages of getting (more) useable eyesight sooner.
And, in my case, easing the load on the ungrafted eye, which is complaining and looking rather horribly red and sore, from having to have a lens in every day (I used to alternate them).
I don't know anything about putting corneal lenses (the iris sized ones), nor soft, Kerasoft, or any other type of lenses soon after a graft. AIUI, the problem would be that you might need new ones so often as the eye changed shape that the price would get prohibitive, and the lens fitting, trial, ordering, etc processes would catch up with the changes inthe eye shape, so by the time you had a new lens it was out of date already. But maybe there are advances I'm not aware of there.
Do ask lots and lots of questions!
Rosemary
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rosemary johnson
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Re: Early lens fitting after graft
Forgot to say: best of luck with your graft.
I think fitting lenses as soon as 3 months depend on the graft healing well and all going well - no-one's going to fit lenses if you're having rejection episodes, for example. 3 months is as early as it might be if all is going well. Or so I gather. Maybe definitions of "going well" vary, though.
ROsemary
I think fitting lenses as soon as 3 months depend on the graft healing well and all going well - no-one's going to fit lenses if you're having rejection episodes, for example. 3 months is as early as it might be if all is going well. Or so I gather. Maybe definitions of "going well" vary, though.
ROsemary
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robcm
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Re: Early lens fitting after graft
thanks for your responses - you're right rosemary, i've been getting sclerals from ken for about 4 years now, and he and linda ficker at moorfields are very keen on early scleral fitting while the stitches are still in. i've been reading about your experience with lots of sympathy, i hope everything settles down and your graft works out well. it's a big thing to go through but i'm sure it will all be worthwhile in the long term.
Rob
Rob
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rosemary johnson
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Re: Early lens fitting after graft
Aha!
Ken's been fitting me with sclerals for getting on 21 years now. In which he's had plenty of time to discover exactly how much I break every rule in the book.
We may yet be going to be discussing progress closely in the coming months, then.... we shall see.
THanks for your kind words about my saga. I think the decision to go for a graft was the right one, but not in that way, in those circumstances, on that day. I will forever regret that I didn't tell A Certain Surgeon that, OK, it was his prerogative not to do what he wasn't happy about doing, but i wanted a second opinion, please; would he please refer me to someone who would.
I fancy Ken's champing-at-the-bit enthusiasm may be about the only think around hich just might get me over the aversion to this THING in my eye enough to try to get this THING corrected. I have warned him I may spend more time crying on his shoulder than telling him how much I can read...... and also that, after nearly 21 years, he knows me well enough to by now to know that if I do, a pint will do me far more good than a shrink.
He laughed.
Great guy, our Ken.
Stay in touch, Rob, and we'll compare notes.
Hope your graft goes all swimmingly and they're talking of lenses asap.
Rosemary
Ken's been fitting me with sclerals for getting on 21 years now. In which he's had plenty of time to discover exactly how much I break every rule in the book.
We may yet be going to be discussing progress closely in the coming months, then.... we shall see.
THanks for your kind words about my saga. I think the decision to go for a graft was the right one, but not in that way, in those circumstances, on that day. I will forever regret that I didn't tell A Certain Surgeon that, OK, it was his prerogative not to do what he wasn't happy about doing, but i wanted a second opinion, please; would he please refer me to someone who would.
I fancy Ken's champing-at-the-bit enthusiasm may be about the only think around hich just might get me over the aversion to this THING in my eye enough to try to get this THING corrected. I have warned him I may spend more time crying on his shoulder than telling him how much I can read...... and also that, after nearly 21 years, he knows me well enough to by now to know that if I do, a pint will do me far more good than a shrink.
He laughed.
Great guy, our Ken.
Stay in touch, Rob, and we'll compare notes.
Hope your graft goes all swimmingly and they're talking of lenses asap.
Rosemary
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rosemary johnson
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Re: Early lens fitting after graft
Three months to the day after transplant (PK in right eye) can now offer practical experience.
Had scleral in grafted eye for first time this morning.
Still not sure how this will (would?) work out in practice, as eye still gts dry adn sore and itchy (and am still putting in drops every 4 hours).
ANyway:
Ken looked sideways across eyeball from ear side, said "Hmm, that looks about an N5", went to get a sample N5 size scleral out of his fitting set, wetted it and added fluorescene and I put it in.
Felt very very strange to be putting a lens into my right eye again. Well, ever stranger than just "it's been a long time", it's now what's left of my eye with this BIT in it.....
Being a different shape didn't seem to affect how it went in. FOr that atter, it came out at I think the second attempt, and sometimes it can take several and a bit of a panic with a new one.
Felt uncomfortable around the bottom edge - as if I'd trapped a lower eyelash in putting it in, but I hadn't, he said. Very unusual to feel discomfort there - unless the soft lens of a piggybacking pair has got pulled out round the edge of the scleral and is half hanging out.
Vision with unpowered trial lens went rapidly from reading at about 5 inches with the verticals and horizontals focussing at different distances to reading at about 8 inches.
Came up with reasonable vision with correction somewhere between -5 and -6, but felt very very q
dizzy tryint
g differea
nt powered lenses. (See other thread.)
Think this is brain damage left by anasthetic meaning can't process rapidly-changing view of world.
Got problem with order at present (ditto) bwt wd be delay on ordering anyway.
Vision has definite potential! - shame aboh
oops! = about the mess surrounding it all!!!
keyboard gone mad!!!!! - off to try to sort it out.
Ebfrznel (Rosemary, as typed at present!)
Had scleral in grafted eye for first time this morning.
Still not sure how this will (would?) work out in practice, as eye still gts dry adn sore and itchy (and am still putting in drops every 4 hours).
ANyway:
Ken looked sideways across eyeball from ear side, said "Hmm, that looks about an N5", went to get a sample N5 size scleral out of his fitting set, wetted it and added fluorescene and I put it in.
Felt very very strange to be putting a lens into my right eye again. Well, ever stranger than just "it's been a long time", it's now what's left of my eye with this BIT in it.....
Being a different shape didn't seem to affect how it went in. FOr that atter, it came out at I think the second attempt, and sometimes it can take several and a bit of a panic with a new one.
Felt uncomfortable around the bottom edge - as if I'd trapped a lower eyelash in putting it in, but I hadn't, he said. Very unusual to feel discomfort there - unless the soft lens of a piggybacking pair has got pulled out round the edge of the scleral and is half hanging out.
Vision with unpowered trial lens went rapidly from reading at about 5 inches with the verticals and horizontals focussing at different distances to reading at about 8 inches.
Came up with reasonable vision with correction somewhere between -5 and -6, but felt very very q
dizzy tryint
g differea
nt powered lenses. (See other thread.)
Think this is brain damage left by anasthetic meaning can't process rapidly-changing view of world.
Got problem with order at present (ditto) bwt wd be delay on ordering anyway.
Vision has definite potential! - shame aboh
oops! = about the mess surrounding it all!!!
keyboard gone mad!!!!! - off to try to sort it out.
Ebfrznel (Rosemary, as typed at present!)
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robcm
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Re: Early lens fitting after graft
hi Ebfrznel
thanks for the update - must be really weird putting scleral over the graft. do you worry when you remove it that you'll affect the sutures?
sounds hopeful and i'm sure your brain will adapt to the new vision quickly. one week to go til my op! in answer to your previous question, i'm having it under GA (surgeon's preference, but fingers crossed will be fine as i have coped well before)
rob
thanks for the update - must be really weird putting scleral over the graft. do you worry when you remove it that you'll affect the sutures?
sounds hopeful and i'm sure your brain will adapt to the new vision quickly. one week to go til my op! in answer to your previous question, i'm having it under GA (surgeon's preference, but fingers crossed will be fine as i have coped well before)
rob
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rosemary johnson
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Re: Early lens fitting after graft
Hi Rob!
Yes, very odd feeling putting lens in again.
Keyboard AOK again now, I'm glad to say.
I'm afraid the stitch (it's a single running stitch) was the last thing in my mind at the time.
I think, if nything, I was worried putting it in about whether I'd "barge into" the new bt and it would hurt, and more concrned about whether it would come out - it sometimes takes several goes with a new scleral to get it out at all (this is since the days when all sclerals are RGP material, so no air holes..... never had problems getting the ones with air holes out. Ah, the old days of air holes! If Ken's reading this, he can laugh all he likes!!)
Actually, it came out fine.
Plus, of course, the general sense of antipathy to the whole thing.
As for the stitch - no, it didn't occur to me. But to be honest, if it did "tweak" the stitch and needed attention from my new consultant, I wouldn't be too sorry (only itchy, I expect!) - because then it would be HER stitch(es) and no long That Bloke's embroidery exhibition!!!!
SOrry to say.....
Incidentally, the last couple of days, I have been able to see my stitch for the first time yet! - not all of it, just a couple of bits.
I think it must be the brighter light coming with this sudden arrival of summer. I've been able to see little bits of black zig zag.
One is at roughly half-past 11 as seen in mirror (12.30 to anyone looking directly), a tiny black v-shape, with what looks like a tiny black blob to the top of one side, as if the thread was knotted there - where surgeon started and stopped the ring of stitch, maybe???
(Is there anyone else reading this who has guessed who I mean, and knows if he stitches from top of eye?)
The other bits were at about 4pm as seen in mirror - ie. just below mid point on ear side of eye.
No, I'm not about to take the Swiis Army Penknife to the bits I've been able to see....... though some sort of comfort to know it would be my choice.
No advance on lens order yet - have appointment next week when doubtless it will have to be sorted out....... let me know when your "week on" apptmt is to be, and maybe we'll be there at the same time!
Rosemary
Yes, very odd feeling putting lens in again.
Keyboard AOK again now, I'm glad to say.
I'm afraid the stitch (it's a single running stitch) was the last thing in my mind at the time.
I think, if nything, I was worried putting it in about whether I'd "barge into" the new bt and it would hurt, and more concrned about whether it would come out - it sometimes takes several goes with a new scleral to get it out at all (this is since the days when all sclerals are RGP material, so no air holes..... never had problems getting the ones with air holes out. Ah, the old days of air holes! If Ken's reading this, he can laugh all he likes!!)
Actually, it came out fine.
Plus, of course, the general sense of antipathy to the whole thing.
As for the stitch - no, it didn't occur to me. But to be honest, if it did "tweak" the stitch and needed attention from my new consultant, I wouldn't be too sorry (only itchy, I expect!) - because then it would be HER stitch(es) and no long That Bloke's embroidery exhibition!!!!
SOrry to say.....
Incidentally, the last couple of days, I have been able to see my stitch for the first time yet! - not all of it, just a couple of bits.
I think it must be the brighter light coming with this sudden arrival of summer. I've been able to see little bits of black zig zag.
One is at roughly half-past 11 as seen in mirror (12.30 to anyone looking directly), a tiny black v-shape, with what looks like a tiny black blob to the top of one side, as if the thread was knotted there - where surgeon started and stopped the ring of stitch, maybe???
(Is there anyone else reading this who has guessed who I mean, and knows if he stitches from top of eye?)
The other bits were at about 4pm as seen in mirror - ie. just below mid point on ear side of eye.
No, I'm not about to take the Swiis Army Penknife to the bits I've been able to see....... though some sort of comfort to know it would be my choice.
No advance on lens order yet - have appointment next week when doubtless it will have to be sorted out....... let me know when your "week on" apptmt is to be, and maybe we'll be there at the same time!
Rosemary
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rosemary johnson
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Re: Early lens fitting after graft
Well, practical experience now under way!
Rob, hope you're doing OK after your graft and will be joining this select club soon.
Had appointment this morning at which the idea was to pick up new contact lens.
Turned into afternoon appointmnet after 2 hour plus wait (!!!!!!!) but new contact lens had indeed arrived.
Put it in.
Felt pretty uncomfortable round bottom edge and outside lower edge.
Ken says it looks fine.
Read second line up on chart with no trouble. Read about 2/3rds of last line. Ken says this is 6/5. (Or, almost.)
Blink.
WOrld goes funny. Have suddenly got air bubble underneath.
Ken not so happy. If it is leaking air bubbles round the edge as I blink, we have a problem, Houston.
I take it out, re-clean and lubricate it, put it back.
Feels a bit better.
Ken wants to see how it settles down and whether it stays bubble-free for a period.
I say I'll go and get some lunch, go to the back and come back.
Find first problem. Eye has changed since the lens was ordered.
From the something to the ridiculous........!!
I'd been sitting in the waiting area for over two hours reading at about 5" range.
Now, there I am in the Cafe, holding the sandwich packets at arms length trying to read the prices on the packs!
Sat on bus on way to bank and back trying to read magazine.
My arms aren't long enough!!!
from one extreme to the other. Or something like that!!!!!!!!
Next stop: ASDA for one of their pairs of two-pound-fifty reading glasses.
Fortunately, when I got back Ken was quite happy that air bubbles were creeping in so kept it in and got (very belatedly!!) to work.
Have still got it but not for much longer - am sitting trying to type leaning back away from the screen. A change from leaning over keyboard peering closely at screen. I'm sure my chiropractor would approve.....
About to go and take it out now as it's starting to feel hay fevery. At least I hope it's hay fever.
Apparently, the problem with post-graft contact lenses, particularly early use, is hypoxia. That is, not enough oxygen getting to the (newly-transplanted) cornea, and making it go white and cloudy.
SUmmed up as: if the world goes misty, it could be three things:
1. hay fever. Take out lens, find mucous, blink, mist goes.
2. hypoxia. Take out lens, still misty, but goes after a while.
3. rejection. Take out lens. If still misty in morning, go to A&E.
WOrld now going a bit misty, but moves as I blink, so hoping it's hat fever, but off to take lens out now.
Discomfort round lower/outer edge did wear off quite quickly.
Thought I'd be wanting to burst into tears, but too busy laughing about the too-short arms.
So far.
Will keep you posted.
Rosemary
Rob, hope you're doing OK after your graft and will be joining this select club soon.
Had appointment this morning at which the idea was to pick up new contact lens.
Turned into afternoon appointmnet after 2 hour plus wait (!!!!!!!) but new contact lens had indeed arrived.
Put it in.
Felt pretty uncomfortable round bottom edge and outside lower edge.
Ken says it looks fine.
Read second line up on chart with no trouble. Read about 2/3rds of last line. Ken says this is 6/5. (Or, almost.)
Blink.
WOrld goes funny. Have suddenly got air bubble underneath.
Ken not so happy. If it is leaking air bubbles round the edge as I blink, we have a problem, Houston.
I take it out, re-clean and lubricate it, put it back.
Feels a bit better.
Ken wants to see how it settles down and whether it stays bubble-free for a period.
I say I'll go and get some lunch, go to the back and come back.
Find first problem. Eye has changed since the lens was ordered.
From the something to the ridiculous........!!
I'd been sitting in the waiting area for over two hours reading at about 5" range.
Now, there I am in the Cafe, holding the sandwich packets at arms length trying to read the prices on the packs!
Sat on bus on way to bank and back trying to read magazine.
My arms aren't long enough!!!
from one extreme to the other. Or something like that!!!!!!!!
Next stop: ASDA for one of their pairs of two-pound-fifty reading glasses.
Fortunately, when I got back Ken was quite happy that air bubbles were creeping in so kept it in and got (very belatedly!!) to work.
Have still got it but not for much longer - am sitting trying to type leaning back away from the screen. A change from leaning over keyboard peering closely at screen. I'm sure my chiropractor would approve.....
About to go and take it out now as it's starting to feel hay fevery. At least I hope it's hay fever.
Apparently, the problem with post-graft contact lenses, particularly early use, is hypoxia. That is, not enough oxygen getting to the (newly-transplanted) cornea, and making it go white and cloudy.
SUmmed up as: if the world goes misty, it could be three things:
1. hay fever. Take out lens, find mucous, blink, mist goes.
2. hypoxia. Take out lens, still misty, but goes after a while.
3. rejection. Take out lens. If still misty in morning, go to A&E.
WOrld now going a bit misty, but moves as I blink, so hoping it's hat fever, but off to take lens out now.
Discomfort round lower/outer edge did wear off quite quickly.
Thought I'd be wanting to burst into tears, but too busy laughing about the too-short arms.
So far.
Will keep you posted.
Rosemary
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