Quicktopic posts: Apr 2003
Moderators: Anne Klepacz, John Smith, Sweet
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Ash
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listener@umbilical.demon.
I've just been tidying up my mailboxes, so several responses at
once that I haven't (I think!) posted yet:
First, Peter said:
I have suffered from dizziness and a
feeling of being off balance in the last month or so. It just
lasts for a couple of seconds and then passes but is quite
strong. It is worse when I am walking around but has been
happening quite regular.
I had a time a couple of years ago when I kept getting (amongst
other alarming symptoms) dizzy sensations. I eventually tracked it down to a trapped nerve/blood vessel/something in my neck.
The doc suggested "physio" type head and neck exercises and it's been much better since. I'm not quite sure how it happened -
prime suspect is trying to stretch out an aching back after
sitting on some very uncomfortable chairs on a work training
course and cricking my neck over the chair-back - but spending
lots of time with head and neck at strange angles trying to get
right up close to the book/paper/computer screen I was trying to read can't have helped.
Dave and Johnathan were talking about seeing flashing lights and floating dots:
Oo-er, I'm getting worried now! What sort of bright lights are
these? - are they tiny bright speckles like the "seeing stars"
one is supposed to get if you bump your head on something? Or
larger, "psychedelically" coloured shapes? I've been seeing a
lot more "black speckles" over the last couple of years (they
seem to be fixed rather than floating cos if I stare fixedly at
something they stay still) and worryingly their increase has
seemed to coincide with increases in hyper-sensitivity to bright light, now at really troublesome proportions. I do from time to time see the larger coloured shapes of floating lights, but
normally when I move and have attributed this to something to do with same trapped-nerve/whatever problem as above. Should I be
linking these two and getting worried?
I've mentioned the black speckles several times to Moorfields but no-one seems bothered. Susan Mason:
Susan, you've talked about the hospital saying that your lenses
fit fine in hospital and go wrong when you take them home. I
notice you also talk about a 20-25 minnute appointment. Is this all in one block, or have they ever tried putting a lens in,
then sending you to walk around, go for a cup of tea, whatever,
and then come back and they'll take another look later? If not, it strikes me the problem could be not the hospital/home
environment but the fact they only ever see lenses that have
been newly put in - when they fit them, I mean - and not a lens
that has had a while to settle in, blink-through the fluids used to put them in and established itself into a "steady state".
Lenses can do this - take a while to adjust from "newly-in"
state to how they are most of the day. And then, when you come
for the next appointment, you put the lens in before you set
off, I presume, and they see them after they've been in for some time?
It's been by no means uncommon for me at Moorfields to have the
sort of split appointment, where I spend a long time doing
"we'll put this one in - how's that? - go and sit down for 45
minutes - how is it now? - hmmm, not too good, let's try this
one...." and repeat the process.
At the risk of making yourself even more unpopular (!) is it
possible to insist that before you go home again, they see a new lens when it has been in for longer - an hour or more - rather
than only 15 minutes, with dye in and being peered at?
Rosemary
--
Rosemary F. Johnson
once that I haven't (I think!) posted yet:
First, Peter said:
I have suffered from dizziness and a
feeling of being off balance in the last month or so. It just
lasts for a couple of seconds and then passes but is quite
strong. It is worse when I am walking around but has been
happening quite regular.
I had a time a couple of years ago when I kept getting (amongst
other alarming symptoms) dizzy sensations. I eventually tracked it down to a trapped nerve/blood vessel/something in my neck.
The doc suggested "physio" type head and neck exercises and it's been much better since. I'm not quite sure how it happened -
prime suspect is trying to stretch out an aching back after
sitting on some very uncomfortable chairs on a work training
course and cricking my neck over the chair-back - but spending
lots of time with head and neck at strange angles trying to get
right up close to the book/paper/computer screen I was trying to read can't have helped.
Dave and Johnathan were talking about seeing flashing lights and floating dots:
Oo-er, I'm getting worried now! What sort of bright lights are
these? - are they tiny bright speckles like the "seeing stars"
one is supposed to get if you bump your head on something? Or
larger, "psychedelically" coloured shapes? I've been seeing a
lot more "black speckles" over the last couple of years (they
seem to be fixed rather than floating cos if I stare fixedly at
something they stay still) and worryingly their increase has
seemed to coincide with increases in hyper-sensitivity to bright light, now at really troublesome proportions. I do from time to time see the larger coloured shapes of floating lights, but
normally when I move and have attributed this to something to do with same trapped-nerve/whatever problem as above. Should I be
linking these two and getting worried?
I've mentioned the black speckles several times to Moorfields but no-one seems bothered. Susan Mason:
Susan, you've talked about the hospital saying that your lenses
fit fine in hospital and go wrong when you take them home. I
notice you also talk about a 20-25 minnute appointment. Is this all in one block, or have they ever tried putting a lens in,
then sending you to walk around, go for a cup of tea, whatever,
and then come back and they'll take another look later? If not, it strikes me the problem could be not the hospital/home
environment but the fact they only ever see lenses that have
been newly put in - when they fit them, I mean - and not a lens
that has had a while to settle in, blink-through the fluids used to put them in and established itself into a "steady state".
Lenses can do this - take a while to adjust from "newly-in"
state to how they are most of the day. And then, when you come
for the next appointment, you put the lens in before you set
off, I presume, and they see them after they've been in for some time?
It's been by no means uncommon for me at Moorfields to have the
sort of split appointment, where I spend a long time doing
"we'll put this one in - how's that? - go and sit down for 45
minutes - how is it now? - hmmm, not too good, let's try this
one...." and repeat the process.
At the risk of making yourself even more unpopular (!) is it
possible to insist that before you go home again, they see a new lens when it has been in for longer - an hour or more - rather
than only 15 minutes, with dye in and being peered at?
Rosemary
--
Rosemary F. Johnson
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Sue Ingram
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Louise Pembroke
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Aimee Wilkes
Hi everyone,
i have only just been told that i have KC ( last monday ) and i am going to have my first appointment on Monday regarding my lenses. I had never heard of KC before and just wanted to say that although i am a little nervous about it all this web site has really helped me to start building my knowledge on KC and try to understand it all.
i have only just been told that i have KC ( last monday ) and i am going to have my first appointment on Monday regarding my lenses. I had never heard of KC before and just wanted to say that although i am a little nervous about it all this web site has really helped me to start building my knowledge on KC and try to understand it all.
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Andrew MacLean
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Paul Bines
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Rob Armstrong
Hi everyone.
Just an update:
I had my 3 month post-graft checkup today, and they are still very pleased with the results (as am I, I'm glad to say!)
Still early days of course-was told that it'll be about the 6 month mark before they start thinking about removing stitches. I'm not complaining though-the longer they put that off the better! Was also told that removing the stitches further improves the vision, has anybody in here experienced that?
Had a refraction done too, which made me feel good, as I could see really clearly without having to put a lens in. So it looks like I've got a good chance of being able to wear glasses at some point in the near future. Although in the last seven weeks, I've gone from being slightly short sighted to slightly long sighted-so obviously I'll have to wait for things to settle down first. Also had a corneal topography done-the first since surgery, and the difference was clearly obvious. Now the colours are in solid blocks, in a sort of off-centre concentric pattern, while my pre-op ones could have passed for a satellite image of the Himalayas or something. So I guess that is also a good thing.
The nurse who gave me my initial sight test today was asking me about my condition, and my experience of it. Turns out her son was diagnosed at 17/18 just like me, and we compared notes about the troubles of coping with RGP lenses everyday. Though she mentioned that he keeps having trouble finding his backup pair of glasses for "those off days". If he has made it to his late twenties still able to cope with glasses when need be, he's had a lot more luck than me!
Just goes to show how varied Keratoconus cases can be, I'm almost 22 and looking at also needing my left eye grafting at some point (probably within a couple of years) and I know there's people far worse off than me. So I'm just glad that my graft (so far) seems to have gone well.
Back at the hospital next week for my other eye, attending the contact lens clinic. My right eye's been getting all the attention since the op, so its time to re-address the balance. Which I am looking forward to, as this lens is getting more and more difficult to wear for any reasonable period.
Hope everyone is OK.
Rob.
Just an update:
I had my 3 month post-graft checkup today, and they are still very pleased with the results (as am I, I'm glad to say!)
Still early days of course-was told that it'll be about the 6 month mark before they start thinking about removing stitches. I'm not complaining though-the longer they put that off the better! Was also told that removing the stitches further improves the vision, has anybody in here experienced that?
Had a refraction done too, which made me feel good, as I could see really clearly without having to put a lens in. So it looks like I've got a good chance of being able to wear glasses at some point in the near future. Although in the last seven weeks, I've gone from being slightly short sighted to slightly long sighted-so obviously I'll have to wait for things to settle down first. Also had a corneal topography done-the first since surgery, and the difference was clearly obvious. Now the colours are in solid blocks, in a sort of off-centre concentric pattern, while my pre-op ones could have passed for a satellite image of the Himalayas or something. So I guess that is also a good thing.
The nurse who gave me my initial sight test today was asking me about my condition, and my experience of it. Turns out her son was diagnosed at 17/18 just like me, and we compared notes about the troubles of coping with RGP lenses everyday. Though she mentioned that he keeps having trouble finding his backup pair of glasses for "those off days". If he has made it to his late twenties still able to cope with glasses when need be, he's had a lot more luck than me!
Just goes to show how varied Keratoconus cases can be, I'm almost 22 and looking at also needing my left eye grafting at some point (probably within a couple of years) and I know there's people far worse off than me. So I'm just glad that my graft (so far) seems to have gone well.
Back at the hospital next week for my other eye, attending the contact lens clinic. My right eye's been getting all the attention since the op, so its time to re-address the balance. Which I am looking forward to, as this lens is getting more and more difficult to wear for any reasonable period.
Hope everyone is OK.
Rob.
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Andrew Bosanquet
Hi everyone
To my knowledge, I have had keratoconus for over 40 years. Went to Bristol Eye Hospital yesterday to get a soft lens for my left (bad) eye but came away WITH A NEW DIAGNOSIS! The finding of glasses that give me good, if very distorted, vision means that I probably have “Pellucid Marginal Degeneration”. Has anyone else been told this? Apparently, over the last couple of years, there has been discussion amongst the experts of splitting keratoconus into two. I think that the differences are 1) conical corneas = keratoconus, and 2) sagging corneas = Pellucid Marginal Degeneration. Fred Giltroy-Tyler described it as like a beer belly. Obviously there will not be a clear distinction, but it might be that there is slightly different treatment/lens shape for the two conditions. I shall do some research on the web.
After my visit to the keratoconus research group in London a few weeks back, where they found glasses that could work, my Optometrist spent ages trying to get a good prescription. He found one which gave even better sight but was quite different to the prescription from London! However, my brain could not fuse the two images that were squashed in different directions. So it is back to the London prescription which still gives me 6/6 vision. He suggested not driving with them as the perception of distance will be so distorted.
I look forward to hearing from anyone who might have Pellucid Marginal Degeneration. And should we add this to the website etc, so that people who are given this diagnosis know that they have friends with a very similar condition called keratoconus?
Andrew
To my knowledge, I have had keratoconus for over 40 years. Went to Bristol Eye Hospital yesterday to get a soft lens for my left (bad) eye but came away WITH A NEW DIAGNOSIS! The finding of glasses that give me good, if very distorted, vision means that I probably have “Pellucid Marginal Degeneration”. Has anyone else been told this? Apparently, over the last couple of years, there has been discussion amongst the experts of splitting keratoconus into two. I think that the differences are 1) conical corneas = keratoconus, and 2) sagging corneas = Pellucid Marginal Degeneration. Fred Giltroy-Tyler described it as like a beer belly. Obviously there will not be a clear distinction, but it might be that there is slightly different treatment/lens shape for the two conditions. I shall do some research on the web.
After my visit to the keratoconus research group in London a few weeks back, where they found glasses that could work, my Optometrist spent ages trying to get a good prescription. He found one which gave even better sight but was quite different to the prescription from London! However, my brain could not fuse the two images that were squashed in different directions. So it is back to the London prescription which still gives me 6/6 vision. He suggested not driving with them as the perception of distance will be so distorted.
I look forward to hearing from anyone who might have Pellucid Marginal Degeneration. And should we add this to the website etc, so that people who are given this diagnosis know that they have friends with a very similar condition called keratoconus?
Andrew
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umbilica@umbilical.demon.
Andrew said:
To my knowledge, I have had keratoconus for over 40 years. Went to Bristol Eye Hospital yesterday to get a soft lens for my left (bad) eye but came away WITH A NEW DIAGNOSIS!
Huh??!!!
Wow, Andrew, that's a bolt from the blue!
The finding of
glasses that give me good, if very distorted, vision means that I probably have Pellucid Marginal Degeneration.
Never heard of it - but this is fascinating. Thanks for giving
us the news.
keratoconus into two. I think that the differences are 1)
conical corneas = keratoconus, and 2) sagging corneas = Pellucid Marginal Degeneration. Fred Giltroy-Tyler described it as like
a beer belly.
Charming!
When I was first diagnosed, the optician (having first banished
me from the room) told my dad it was "like a lady who isn't
wearing a bra" (or words to that effect). I think "like a beer
belly" sounds even worse!!
I look forward to hearing more about this. Do let us know if
you find any more, Andrew. And maybe one of the "experts"
lurking on here might like to come out of the shadows and spill
some beans?
I trust we can have this on the agenda for the conference in
June?
Rosemary
--
Rosemary F. Johnson
To my knowledge, I have had keratoconus for over 40 years. Went to Bristol Eye Hospital yesterday to get a soft lens for my left (bad) eye but came away WITH A NEW DIAGNOSIS!
Huh??!!!
Wow, Andrew, that's a bolt from the blue!
The finding of
glasses that give me good, if very distorted, vision means that I probably have Pellucid Marginal Degeneration.
Never heard of it - but this is fascinating. Thanks for giving
us the news.
keratoconus into two. I think that the differences are 1)
conical corneas = keratoconus, and 2) sagging corneas = Pellucid Marginal Degeneration. Fred Giltroy-Tyler described it as like
a beer belly.
Charming!
When I was first diagnosed, the optician (having first banished
me from the room) told my dad it was "like a lady who isn't
wearing a bra" (or words to that effect). I think "like a beer
belly" sounds even worse!!
I look forward to hearing more about this. Do let us know if
you find any more, Andrew. And maybe one of the "experts"
lurking on here might like to come out of the shadows and spill
some beans?
I trust we can have this on the agenda for the conference in
June?
Rosemary
--
Rosemary F. Johnson
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