Quicktopic posts: Dec 2003

[umbilica@umbilical.demon.]

Wow, Jay!!!!

I better hadn't say exactly what I think of some of what you've
been told or the moderator will start banning me.

Maybe a "simple" way to start would be to observe that a)
opinions do seem to vary on the best way to treat KC; and b) it is quite a specialised area in which not all medics are expert (!).


Jay:
"I have no idea why he have me those drops either; he also gave me antibiotics as well....and just researching I have seen no
cases had this prescribed; maybe he was being safe?"

The UK as a whole - if not the "western world" as a whole -
tends to suffer blanket overprescription of antibiotics. That's one of the reasons why resistance to them by the germs is rising so fast and so alarmingly.


Jay:
"I have seen people over in the states having taken Sodium
Chloride 5% which allegedly drains the fluid out by drying the
cornea...B&L make it called Muro 128; but not sure where to get it...I mean at the end of the day its sterile salt so I doubt
anything bad could happen"

I presume this is meant to work by osmosis - "the transfer of
water from a dilute to a concentrated solution across a
semi-permeable membrane until equal concentration is reached".
In other words, you put a strong salt solution into your eye in
the form of drops which will make fluid leach out of the cornea
to dilute the strong salt solution. The risk - apart from the
fact it will probably sting somethign rotten - is that it
leaches out water from other parts of the cornea, thus leaving
them dehydrated, while not shifting the actual flood waters.


Jay:
"But the funni thing was....guess what he said first...if it
doesnt heal youll have to have a Corneal Graft....in this case
it was in one ear out of the other...but I thought Id play along with him and say "Why" and he said well its bund to come and go, and its not good for the eye, and yull get bad scaring blah blah blah....but to him the solution was a graft....bless him!!"

I've been told that once one has had a hydrops and it has healed over, it is very unusual to get another one in the same eye.
Despite this, I've had 3 in my left eye. Apparently I am very
unusual.

Jay:
"When I was went for my first lens change about 5 years ago I
went into a well knownHigh Street Opticians...No Names
Mentioned......and the lady day just didnt have a clue...she
said a) my cornea will eventually come off; I shuld get a
transplant and she was refering with me URGENT stamped n the
letter to my GP LOL..............NO JOKE!!!"

Sadly, I believe this.....


Jay:
"PS - I remembered why he gave me the pupil dialating drops...he said that it will help my eye open...and not get lazy...."

Splutter......... Cough.......


Jay:
"suffce
to say I have NOT taken any of the drops.....no because Im being stubborn but in this case I just feel I know a little more on
the overall condition than the person who saw me...."

Nor would I have done, in your position! I hope they didn't charge you for them?


Jay:
"But on a
lighter note...there is now NO pain in the eyes, I can open it fully, and its still Misty...but not white thank god."

That sounds promising! - I'd say that sounds like it's a fairly
mild one, and with luck should clear up comparatively quickly.
Whch isn't necessarily the same as leaving little scarring,
though if the split isn't too big, there's less to scar, of
course. I'll keep hoping for the best for you.

Do be warned, though, that even after a mild hydrops such as my
third and fourth, it's possible to have reduced/more unreliable
tolerance for a while, even after the mist has cleared. I found that with both; it get back to "normal" after a while.

Rosemary

--
Rosemary F. Johnson

[John Smith]

Sue/Sajeev (and everyone else for that matter!)

Oops! My fault! I uploaded Ken's comments and amended the index, but it looks like I forgot to upload the index!!

Everything's accessible now, it's the "Cure for KC?" in the News section.

And for Sajeev's benefit, you don't have to be a member of the self-help group to read most of the site; if you do want to join though (it is free), just send Anne Klepacz an email at Anneklepacz@aol.com or read the "What we do" page at http://KC.roundel.net/aims2.html

John

[Sue Ingram]

Thanks John. I think the comments from Ken serve to remind us to keep our 'feet on the ground' whenever it looks like there is some magical new answer to KC, or a possible 'cure'. We always need to ensure that we get a balanced view, and never go ahead in haste with anything that might jeopardise our vision/management of KC in the long term. SUE

[sajeev]

To John Thanks for you help!

To Rosemary, I have no finacial interest in INTACS, have you got any finacial interest in not developing new treatments in this counrty?
All that I asked is what is happening with it here in this country ?, Does anyone know any more ? Is anyone looking in to it ? why is it approved in the USA ? If pepole study the results and benifits as I have, I am sure you would also ask, what is happening with INTACS in the counrty ? what is wrong with that ?
when people talk about other treatments do you ask,what finacial interest they have ? What proof do you have that I have a finacial interest ? Please have some proof before you accuse people. Thank You.

[Paul Bines]

> I have also been advised not to fly for 5 years after
> operation.
Odd advice: after my last graft (in April~) I was due to fly, and asked my consultand it this was ok - he said yes. This was a week after the op, and 6 months after another graft on my other eye.
I'd make a point of clarifying with your consultand exactly what is meant by this - I suspect it might be more about not getting into the cockpit of a plane than general air travel!
Au REs.,
Paul
http://www.efbenson.co.uk/
http://www.paulbines.co.uk
http://www.convergent-diversity.co.uk/

[Gillian]

John - please let me know exactly where the news section is - is it on on UK KC website and if so where?

[sajeev]

To Ken,
Thanks for your detailed and concise comment on the ARK/Mini ARK. I am very much glad we have someone like you who is able and willing to comment on issues like this. Take care and MERRY XMAS !
Sajeev.

[John Smith]

To Gillian, and anyone else who is not aware of the UK Keratoconus Self-Help and Support Group.

The "news" section is on the front page of the group's web site at http://www.keratoconus-group.org.uk/

The particular story is highlighted in yellow because it's new half way down the left hand column. It's entitled "A Cure for Keratoconus? Exercise caution!"

John

[=?iso-8859-1?q?abbas=20ra]

dear sir or madam;
I am abbas rahimi and I'm 30 years old.
I have had KC from 13 years ago and intrested to know about KC more. I would like to know more information about eye,KC,cornea
structure;and
the last researches about diagnosis and remedy.
besides I have some questions:
Is there any mechnical or physical way to corect KC except transplanting and hard contact lens ? Is it possible to correct KC without transplaning?
How much is eye pressure; cornea thickness in safe eye and KC?
If it's possible to send me this information by airmail
I thank you very much; and my addres is:

abbas rahimi
NO.13 ;moein abad ST ;
Aran&Bidgol , Iran 87417




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[Andrew Thomas MacLean]

I don't really know where to begin. I arrived in good time and in good health at Gartnavel, only to be told that there could be no surgery on my eye as they had no anaesthetist! I'd be rescheduled for Friday 12th.
Pity they hadn't taken the trouble to let me know.

Andrew