All of us Vs Keratoconus


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TOPIC: bluesfan's x-linking


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Date: Sat Sep 15 6:23 AM, 2007
bluesfan's x-linking
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I will be doing my crosslinking very soon (next Friday tentatively) at the Barraquer Centre for Opthalmology in Barcelona, Spain. Hopefully, if I am able to type I will be keeping eveyrone updated of my experience here on this thread!

I know this might be a bit "out of the subject" but: how come the font on this site is SO tiny!! It makes writing and reading REALLY diffcult!!

Ok for those of you interested here are my Pre-op conditions:

PRESCRIPTION:
OD
Sphere: -.4.50
Cylinder: -3.00
Axis: 82

OS
Sphere: -2.50
Cylinder: -3.00
Axis: 78

RE: K1 - 48.94 D - 128 degrees
K2 - 45.83 D - 41 degrees
I-S Value: 2.52
LE: K1 - 58.14 D - 70 degrees
K2 - 55.65 D - 179 degrees
I-S Value: 4.71

PACHYMETRY (averages readings for each eye):
RE: 533 microns
LE: 560 microns

AXIAL LENGTH:
RE: 24.37 mm
LE: 24.35 mm

So far i am getting approx. 80% of visual acuity from my glasses with the existing prescrption above. I haven't worn RGP contacts yet and have opted against wearing them since I was 1st diagonosed back in July 2007 as I was told it would be better to stay away from them if I intend to do C3R due to possible corneal scarring that can affect the C3R (not to mention how terribly expensive these lenses are over here and on top of that scheduling a fitting session can be very costly as well!).

Although it seems like I am an ideal candidate for the C3R (I am 28 years old with corneal thickness that is approchaing 400 microns int he thinnest points) and where achieving a stablizaition of my condition at least post op could mean I could stick with glasses as opposed to the contacts (with all their complications).... I was rather surprised to hear the following replies from some of the doctors who perform C3R when I contacted them while I was looking for where to get my C3R done:

"C3-R makes most sense in especially 2 situations:
1) young person where the keratoconus is getting progressively worse but the vision is still reasonably good
2) someone where contact lenses are no longer suitable and the next step is corneal transplant

If someone has keratoconus and requires wearing hard contact lenses that provide good vision without any problems with the lenses, we advise to continue wearing the lenses. Only when the lenses become problematic do we advise C3-R"

But wouldn't waiting till a transplant is needed be already too late for C3R??? I was also surprised to hear from some people at Dresden that C3R is "unecessary" if RGP's can be used and if the KC is currently stable. This seems to contradict everything I have read so far on forums like this and from the various clinical studies that are availbale on the internet. If C3R, at the very least, stops the KC "in its tracks" why wait until the condition is worse? Isn't it better to be proactive and save whatever that could be saved? especially if the patients profile is ideal?


Anyhow sorry for the long post, will keep you guys updated with my developments...

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Date: Sat Sep 15 3:15 PM, 2007
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BF, thanks for the numbers, it looks like you are a very good candidate for X Linking.

The text was bigger one time, but that meant much more scrolling and the layout going out of sink, so those who wanted to skim, it would take longer, it's bigger than before but still keeping the other things managable for everyone, but to increase it more use the settings on the browser your using. You can also increase the font in the posts that your writing when posting as well.

There are various aspects of thought with the other stuff you say.

It depends if you would rather be very pro-active or not and monitor the KC. "If it ain't broke don't fix it" kind of thing.

The cutting of the host cornea (when a transplant is indicated) may be better after crosslinking is used, it may be another use that may happen for Crosslinking (even less post-transplant astigmatisum is hoped, but at that late stage there is no loss in trying). So you see there are other aspects and its not as simple as being black or white.

Keep us posted!




-- Edited by Kane at 15:20, 2007-09-15

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Date: Mon Sep 17 3:16 PM, 2007
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Hello guys.I am going to say wright now magic words.Collagen cross linking, collagen cross linking,collagen cross linking.

I could repeat it a billion times.Please who ever has keratoconus or other Primary corneal ectasia perform the treatment.Dont listen to anybody.
Collagen cross linking and Theo Seiler Has show us Paradise.Just do it.No questions asked just 400 microns minimal corneal thickness.Even lower is worth the risk.Tricks from Doctor Theio Seiler will be let it out i suppose at the third collagen cross linking congress.

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nothing else matters


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Date: Fri Sep 21 4:10 PM, 2007
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OK folks here comes the update...

Just about 3 hours ago I completed my first cross linking session done in the eye in which the KC is more prominent, at the Barraquer Centre in Barcelona, by Dr JUan Alvarez de Toledo who was very supportive and reassuring. A couple of days ago Dr Alvarez de Toledo saw me and discussed the treatment after which a full set of exams was done. The actual procedure today went very smoothly, it was generally painless (no stinging or burning whatsoever). Surprisingly I dont seem to have any light sensitivity at all unlike what peope have reported (today is a cloudy day in Barcelona, but even indoors with the lights on I seem to be doing perfectly fine) so I am wondering if this is normal?? Of course the corneal haze is there due to the de-epithelization. Bandage lens is on right now and I have been given a set of different drops (I suspect these are the topical steroids and irrigating agents) as well as some painillers to use as needed and I will be seeing the doctor again tommorrow for a check up. Otherise I feel a slight discomfort and I am using my prescription glasses (mainly using my right eye).

will keep updating..

-- Edited by bluesfan at 15:06, 2007-09-22

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Date: Fri Sep 21 6:11 PM, 2007
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Hiya Bluesfan,

Glad to read yet again a nicely writen post, composed very well ! I have read that some people have had haze and others not as expected, with only decreased vision during the recovery. The pain levels differ as well reading through some of the great posts made here, as can healing, it can vary between person to person from what has been written here.

Because your pupil is dilated to let more light in due to the haze and recovery because the eye is trying to see... any light can be a sensation at this time !

Try to get one of those rap-a-round sun glasses. They are a bit of a fashion statement but who cares about that at this time!smile

Take Care


-- Edited by Kreading at 18:12, 2007-09-21

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Date: Sun Sep 23 2:33 AM, 2007
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Ok for some reason my latest post to this thread did not go through so here is a 2nd go at it!

Mnay thanks to kreading for the kind words!!

2nd day after x-linking of left eye:

Was able to go out last night (same day of operation) had no pain at all or problems with light sentitivty accept when passing by REALLy bright lights (such as cars with halogen head lights) or when light reflecting over a white surface.

Slept real well overnight with eye guard on. Did not need to use painkiller prescribed by doctor.

Woke up this morning with my x-lnked eye FULL of tears. Had some trouble slowly adjusting to light in early in the day. Oddly indoor lights weren’t bothering me but the light from my mobile phone screen (which is not too bright) seemed to seriously bother me.. go figure!

obviously I am dependent on my un x-linked right eye for accurate vision with glasses to read and to do everyday things. Otherwise my x-linked left eye is hazy and vision is poor but still with it alone I can still do things like walk around reliably indoors etc. contunued using tobradex drops, irrigating drops and lubricating drops. stopped using dilating drops per doc's suggestion due to lack of pain. otherwsie went out today and had little probles with eye sesntvity. Unable to use wrap around sun glassed given by hosptial due to need to wear my prescrption glasses foor beter eye sight. Able to manage without sun glasses.

saw doc this morning for a check up. Everything seems to be fine so far and was given an appointment for another check up on Tuesday. He had suggested earlier that I wait a month or 2 before x-linking my better, right eye. Today it was suggested that I may not need to x-link it at all. Still note sure what to think or make of that. Any feedback or suggestions from those of you are more experienced would greatly appreciated!

Will keep you guys posted

-- Edited by bluesfan at 02:43, 2007-09-23

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Date: Sun Sep 23 8:27 PM, 2007
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Thank you for the details, this will really help out when people read it who would other-wise not know what the whole thing involves.

You have to be congratulated because you have learn't a lot in the short time you had KC thatall effort should be paid to prevent the disorder from progressing. Because advanced KC is problematic to say the least in trying to correct it,

Also there are people with advanced KC (Transplants) who run other sites with no hope for themselfs who will not tell you the truth which got them where they are (which is with there corneal tissue removed).

Here are some points (its just easier to write them down this way)

1)  90% has KC in both eyes
2) Starts in one eye first
3) Try to stay out of contact lenses (its is medically used for us... us such there are complications anbd side effects with them... that you could avoid)
4) You could adopt a wait and see approach... or a prevention is better than cure approach.

Well done so far! and thanks for telling us of the details you write!

Kane

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Date: Mon Sep 24 2:30 AM, 2007
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Thank you Kane for your encouraging words and for sharing some of your insights. This is exactly what I feel this group is all about, knowledge: the more you know the better one just cannot emphasize that more!!!

When I decided to share details of my x-linkng experience here I did so because I found the posts of people like Valeri , Helen, Zeus and others who already did x-linking so helpful to me, in fact I cannot empahisze how helpful they have been and continue to be! I am hoping that by sharing my story too someone, somewhere in the future will find this helpful or perhaps it may save their sight as well.

I totally understand what you mean about contacts. Based on my discussions with other people who I met with advanced KC who are currently using contacts it seemed like contacts are something to avoid if the possibility exists. Not only do they come with their own set of side effects and problems but they fact that they require continuous re-fitting by a capable optometrist can be a real drag. Of course the lens themselves and the fitting sessions they require are seriously costly bearing in mind that most insurance plans WON’T cover them! Furthermore the fact that these people also report that with contact lens one can only get so many hours of wear per day depending on the KC, goes to show what a serious effect KC can have on one’s lifestyle.

Finally I feel that a “prevention is a better than a cure approach” is a better idea especially if there are enough signs to show that the problem is about to start. My only concern here is how do we as patients get this message through to our doctors who either may: 1) have a more conservative approach to matters (i.e. the “if it ain’t broke don’t fix it” approach as kreading mentioned in a previous post) or 2) doctors who don’t know enough about x-linking in the first place. I invite you folks to provide your feedback on this!


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