Quicktopic posts: Aug 2003

[Stoop Hoop]

Once again thnks guys for the response, thankfully im lucky enough to have correctable sight in my right eye (with a contact lens) which gives me good vision. As my last post graft seems ok. so still happy.I was wondering about these scleral lenses ive read about on here, am i correct in understanding that they do not touch the cornea at all, they touch down on the which of the eye outside the cornea?? is the gap that is then left filled with a special saline?? just wondering because they were never offered as a treatment prior to my operation.Anyway, nearly a week after my op and my eye is open for most of the day, being closed only mainly in the morning while i wake up. Actually being a student this should really say midday not morning hehe.One final point, to Paul, is your vision fine with glasses?? because to see with glasses would be a great. Could give my right eye a rest from the CL for a few hours every now and again.
Ste

[Claire]

Hi! I posted this query on the KC-link page. John Smith suggested I also post it here, since he recalled someone who had experience who could help me.

My daughter is 20 years old. She has multiple
disabilities including cognitive differences,
impulsivity and complex communication needs. She was
diagnosed with KC two years ago when she had an
episode of hydrops in her right eye - This did not
effect her vision very much because she had very
little vision in that eye to begin with. Just 2 weeks
ago she began an episode of hydrops in her left eye
(her good one). She is very uncooperative with eye
exams and drop administration. She clamps her eyes
shut, refusing to open them and fights with the rest
of her body to resist anyone or anything coming near
her face (especially light). It takes four or five
people restraining her, someone to pry the eye open
and the Doctor to try to get a peek, just to look at
her eye. We have seen three ophthalmologists in the
past two weeks - we were initially out of town, then
her own Doc and his partner. None were able to get a
slit lamp exam, but all concur that the hydrops os
pretty bad and that she should have a corneal
transplant!!:(

They say that anaesthesia will be necessary to get a
real good look at the eye and the decision whether to
operate should be made at the same time, so as not to
subject her to two general anaesthesias. They also
say the surgery will be the easy part. Aftercare will
be difficult, perhaps even dangerous in her case due
to her inability to cooperate!?!?!

We we be seeing a corneal specialist next week and I
am hoping he has some other answer. Our worry is not
the surgery, but the aftercare. Does anyone have any experience with a
=
case
like our daughter's. Her Docs said they have done cataract surgery
with
children with autism who wear a helmet to prevent rubbing during
recuperation (round the clock) and/or splints on the elbows. But even
=
those
extreme measures don't address how to get drops in or examine her eye
to =
be
sure it is progressing as it should.

She was legally blind(20/600) before her first hydrops
episode, being severely myopic and refusing eyeglasses
due to sensory defensiveness around her head and
perhaps in hindsight were the corrections truly
helpful? But she always functioned VERY WELL
visually. SHe was a pro at using her minimal vision
to get by. Since her second hydrops, she has been
bumping into things, missing doorknobs, etc. SHe is
almost totally blind. Could this improve without
surgery at least back to the level of vision she had
before? SHe doesn't need 20/20, but she needs to be
able to see something!

Claire

[Stoop Hoop]

Claire, i was under the impression that hydrops would heal after a period of time, would this give your daughter some sight back?? sorry to hear about her sight. and hope you can post on here soon with news of improvement.best of luck. Ste

[Claire]

Well, that's the interesting thing. She sees her corneal specialist next week and each day her vision seems to be getting a little better -- although not yet back to what it was. I am hoping now that her regular ophthalmologists were just not very familiar wiht hydrops and that ultimately she won't need the transplant. It has been very disconcerting, though, since we thought we knew what we were getting into when this hydrops started since she had one in the other eye before. But that time she could see throughout the episode. Of course, her better eye was unaffected then.
Claire

[Leon Davis]

I am due to have my Corneal Graft on Wednesday of next week, and am rather nervous now, have been playing it down, but the really annoying part is that everyone keeps saying, yeah it will all be fine, no problems, but in fact these people sit behind a computer all day and no nothing about Keratoconus - I just wish they would understand that it is not always plain sailing - I have had this disease for 8 years now and dealt with it, now its time to face the music I want to back out. Still there are alot worse off people out there than myself, be good freinds and good luck to you all.

[sarah marsh]

for leon....
just to say best of luck for next wednesday! hope all goes well for you and keep us all posted.
if you wanna chat please feel free to email me on STARLIGHT7723366@aol.com
i had transplant last year so if i can help please mail me .
sarah x

[Andrew Thomas MacLean]

Hi Leon

Got your message. My operation is not until December, and I've got growing anxaieties too. I've had KC for 20 years or more, and have been glad to be able to cope with corneal RGP lenses all this time. Yesterday I took delivery of a scleral for my left eye, and am aprehensive about using it AND of course about the surgery.

I used to go sky diving, and haven't really felt this way since my second parachute jump! Looking at this site I have been encouraged by all the positive feed back and the honesty as others have described some of the problems they have faced after surgery. Fore-warned may really be fore-armed!

Fear is okay. I guess the difference between fear and dread is that we are afraid of something real, while dread is ill defined and not located in any danger that we might actually face. So you and I are afraid of surgery: of the event itself, of what will happen afterwards and of how things will be.
I think that courage is the way we face our real fears and see beyond them to something of value that lies the way we fear to go. I hope that we can both find courage, not so that we will fear nothing, but so that in spite of our fears we will be able to take hold of the opportunity for restored sight.

I'll be thinking of you.

Andrew
----------
>From: QT - Leon Davis <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: QT topic subscribers <qtopic+subs@quicktopic.com>
>Subject: Keratoconus
>Date: Wed, Aug 27, 2003, 12:21 pm
>

< replied-to message removed by QT >

[Stoop Hoop]

He Leon. I had my graft just last week on mon tuesday the 19th i think it was. I was very nervous about the whole thing really. but in the end i found that there was not much to be nervous about. You see, if you go under general anesthetic, as i did. You know absolutly nothing about the operation until you awake, in somewhat of a blurry haze, and mumbling rubbish in the recovery room. I would say the hardest part is the 48hours after that.(it was for me anyway) Because it is when you feel most discomfort. But now a week later and no1 can even tell ive had an operation. I seem to have recovered very well. I too have had KC for about ten years now, and use to enjoy playing rugby. I still play football, go out with mates etc... and if my operated eye carries on as it is now i believe i shall be able to carry on my life as i did pre op, just taknig extra measure to ensure nocks are kept out of the equation and i keep the eye clean and fre from infection. So from my personal experience i hope it goes as well, and try not too worry (i remember people saying this to me but its hard to take in when its you who is actually going under the knife.) Again best of luck. Look forward to seing an update. Ste
Stoopy75@aol.com

[umbilica@umbilical.demon.]

Dear Claire,

Sorry to hear about your daughter and the hydrops.

You've come to the right place! - several of us here have had
hydrops, some more than once. personally, I've had four (!! -
this is supposed to be something that doesn't happen) of varying degrees of severity.

I'm guessing you know basically what a hydrops is? - a membrane
ruptures which lets fluid through, and this floods the tissues in front of the rupture. For the hydrops to clear up, first the
rupture has to heal, then the body's metabolism has to clear away the "flooding".

SOmetimes, the membrane ruptures more than others - with my
first two, the world went completely white in the affected eye
for about a month; other times the rupture is smaller and the
flooding less, and the person can still see round it, with just
a bit of cloudiness in the centre.

Until the rupture has healed and the floods been cleared,
there's nothing that can be done. some hospitals may prescribe
various drops, or painkilling eye ointments, but from my
experience, I'd say that I wouldn't bother - when my eye was
sore I took a paracetamol, which is far cheaper!! - and much
easier.

A note here: I can understand your daughter's extreme reluctance to be examined *verrrrry well* indeed! - having a hydrops can
make an eye even more sensitive to light than usual. So having
an optician/doctor/ophthalmologist trying to shine bright lights at her is probably VERY, VERY PAINFUL!!! If you can get them to stop trying to do so, this is very much in her interests - and
she might even be less averse to letting you look at it/her.


Typically, a hydrops might take a month to six weeks to clear up. Though this does vary - poor Harpo's took 13 weeks, if I
remember rightly. No-one can or should try to decide what to do about it until it has healed over and un-flooded and the results can be seen.

So, what happens? - well, the best thing is that the rupture
heals, the flood waters recede and gradually the person starts
to be able to see again (typically, round the edges first, with
the white fog taking longest to clear in the middle). ideally,
the rupture heals well, and in some cases the healed part is
stronger and stiffer than before so the effect of the KC is less over the healed part. Other times, there is some scar tissue
where the rupture was. How much scarring there is depends on
lots of things - how big the rupture was, the general state of
metabolism of the person, their age, put luck, etc etc.

Sometimes, there is so much scarring that the person's vision is severely affected and a corneal transplant is recommended.
Sometimes there's only a little scarring. Sometimes, there's a
noticeable amount of scarring but it gradually improves over time.
Note: my third and fourth hydrops - the little ones - cleared in a week to 10 days, but my eyes could get more than usually
snsitive for a few months afterwards. I think this was just
taking some while to get back to "normal" after the first
patching-up operation was done with.

So..... the first thing to do is nothing, but wait and hope
while the rupture mends itself. And if your daughter is in
pain, can you give her something for the pain? - aspirin?
paracetamol? The chances are that the hydrops will heal over
and not leave enough scarring for a graft to be necessary. But
no-one is, realistically and sensibly, going to be able to tell
that for at least a month/6 weeks after it happened, and maybe
even longer. Even then, if there is a bit of scarring, it may
be better to wait and see how it settles down.


If it's any reassurance - even after 4 hydrops, which is said
not to happen, I'm nowhere near a graft. They are survivable.


Clearly, I'm not a medic, and I haven't actually seen your
daughter's hydrops, nor do I know any more of her case history
than you wrote in your email. But in general, I'd be inclined
to think that for anyone to start making plans for anaesthetics
for investigations and grafting at the same time when 2 weeks
into a hydrops (and no doubt still very light-sensitive) would
seem a bit precipitate.


Good luck to you both! - I hope it clears up well and promptly
and you daughter's vision returns to more-or-less what it was
before. And that the soreness and extra-light-sensitivity
doesn't take too long to recover. Meanwhile, and I know this
sounds like a "mission impossible" task, please try to keep calm and cool and relaxed and not worry too much, and wait patiently
till the eye's had time to heal.

Keep us posted on how you/she/the eye gets on, won't you?

Best wishes,
Rosemary

--
Rosemary F. Johnson

[Claire]

Thank you so much, Rosemary, for your detailed description of your hydrops experiences. I have been reading on several websites various folks' descriptions -- and yours is exptremely thorough. Sounds like after four you are almost a "pro." The Docs who have been telling us that she needed a transplant admitted that they don't see hydrops very frequently. Your infomration has been very reassuring. Actually, the other hopeful thing is that your description of the process is consistent with Hannah's last hydrops experience. The eye returned to almost normal with jsut a little scarring and her light sensitivity went away as well after about two months.

This time -- we are now three and a half weeks in -- her vision was more effected, but one would expect that since this is her only good eye. Best of all, each day her vision seems to improve a little and even I, as a layperson, can tell that her cornea is a lot clearer than it was a week ago!

I am almost certain that she will not need a tranplant. As harrowing as this experience has been, one good thing is that we have now been referred to a corneal specialist who will be seeing Hannah and advising us. I trust that he will have a little more experience with keratoconus, hydrops, and associated treatment.

Still there is nothing like the first hand description of folks who have lived this experience to help us understand what Hannah is going through. Isn't the internet wonderful?

Thanks again, Claire