Thursday, February 16, 2006

 

Introduction

Hi my name is Jim Kokkinakis. I am an optometrist in the CBD of Sydney and one of my specialties is a condition called keratoconus or conical cornea.

This condition is not that common ie it affects approximately 1/2000 of the general population. Over the years I have seen many hundreds of keratoconic patients, whereas a general optometrist will see approximately one keratoconic patient per year.

The main purpose of this blog is to raise the level of information on this very misunderstood condition and hopefully lower the level of concern that commonly is perpetuated by misinformation.

I invite you to regularly come back and I promise to keep updating and discuss the information that I post.

Keratoconus is NOT a blinding condition! It certainly can be very inconvenient to treat some times but the reality is that the overwhelming majority of people that exhibit this condition will continue life normally and be productive members of society.

Comments:
Hello Jim,

I can't thank you enough for creating this information blog. My wife was diagnosed with "Forme Fruste Keratoconus" last evening when she went for an inital appointment to get LASIK treatment.

The doctor refused to do LASIK on her due to the condition and ever since we have been online in effort to find more information on this disease.

She is 34 and have had severe migranes (3-4 times week) and have always complained of pain in her forehead and eyes. We were thinking that a corrective LASIK surgery was the solution until yesterday.

We live in the Washington DC area of Maryland and are trying to find an Opthomologist to get to the bottom of this.

Once again, thanks a million for this well detailed information. Please post of email any suggestions if possible.

Thank you.

Paul Randhawa
randhawateam@gmail.com
 
I'm Marvin Bryan de SIlva, a keratoconic patient from the Philippines, I would like to thank you for having this blog.. I already went to have my hard contact lense but still, i have hard time seeing things. the lenses helped me to see things brighter, but the shadows are still there, it makes things double.. its very unconfortable., still thank you for this blog.. this is very motivating for me..
 
"Keratoconus is NOT a blinding condition!"

I think it's cannot be repeated enough...I'm living with this desease too since 1994 with contact lenses - and everything is fine.

P.
 
Again I apologise to the readers of this blog for not replying. Back in 2006 when i first started it I had no concept that i would receive so much interaction on a relative rare condition.

I will answer each one of the posts left so far one by one.
 
Randhawa
I am sure you will have sorted out the issues with your wife by now. If I was replying back then, I would have given some simple advice.

At an age of 34 being diagnosed with Forme Fruste Keratoconus is really a non-event other than you are not suitable for laser vision surgery as the cornea is too thin.

I am not saying that migraine headaches are non-event its just that such a small level of keratoconus at that age cannot really progress much, therefore it is very unlikely to cause any real issue.

Patients with real forme fruste keratoconus are easily managed with normal spectacles and normal contact lenses.

I would be very interested in finding out how your wife has been visually corrected in the last few years.
 
Dear Marvin
I am sorry that you are having trouble with your hard lenses.

Your issue possibly can be improved using many techniques from:
1. Glasses over the top of contact lenses
2. Grinding the hard lens with astigmatism correction.
3. Using a Synergeyes hybrid lens.
4. using a miniscleral

Unfortunately in countries like the Philippines there are not all options available, nor the expertise to take on the more difficult keratoconus patients.
 
Dear Marvin
I am sorry that you are having trouble with your hard lenses.

Your issue possibly can be improved using many techniques from:
1. Glasses over the top of contact lenses
2. Grinding the hard lens with astigmatism correction.
3. Using a Synergeyes hybrid lens.
4. using a miniscleral

Unfortunately in countries like the Philippines there are not all options available, nor the expertise to take on the more difficult keratoconus patients.
 
Dear Marvin
I am sorry that you are having trouble with your hard lenses.

Your issue possibly can be improved using many techniques from:
1. Glasses over the top of contact lenses
2. Grinding the hard lens with astigmatism correction.
3. Using a Synergeyes hybrid lens.
4. using a miniscleral

Unfortunately in countries like the Philippines there are not all options available, nor the expertise to take on the more difficult keratoconus patients.
 
Dear keratokonuz

I try and repeat the fact that keratoconus is not a blinding condition because over the years I have had thousands of keratoconus patients referred for management and many have the impression they will go blind - it is only a matter of time.

This of course is not true. Stop rubbing your eyes, get lenses fitted by an expert and if you might require a corneal transplant - get it done by an expert. Ultimately you will live a pretty normal life.
 
Thanks for taking the time to reply to these comments and questions. I feared I would go blind by my keratoconus, but you have definitely made me feel better about it. Thank you for peace of mind.
 
Is this blog still going? My son is 21 and has had Keratoconus for at least 10 years that we know of, his left eye is the one that is affected the most and he is at the stage that he will have to go on the donor list for a corneal transplant. He has had glasses for 10 years now and the prescription of the glasses is as high as it can get, meaning his eye is 'not good', therefore the transplant is the next step..I feel so bad for him as he is a young man and about to go through transplant, he is very scared as am I. A few things I would like to know about corneal transplants are: can you get more than one transplant in the same eye, not at the same time of course, but years down the track, also what are the statistics of a transplant rejection, it's a huge step and want to make sure we are making the right decision. His opthamologist said in the next 2 years he would be put on the list. Any input would be appreciated, you can email me as shyausgal@hotmail.com thank you for reading my message..cheers
 
Is this blog still going? My son is 21 and has had Keratoconus for at least 10 years that we know of, his left eye is the one that is affected the most and he is at the stage that he will have to go on the donor list for a corneal transplant. He has had glasses for 10 years now and the prescription of the glasses is as high as it can get, meaning his eye is 'not good', therefore the transplant is the next step..I feel so bad for him as he is a young man and about to go through transplant, he is very scared as am I. A few things I would like to know about corneal transplants are: can you get more than one transplant in the same eye, not at the same time of course, but years down the track, also what are the statistics of a transplant rejection, it's a huge step and want to make sure we are making the right decision. His opthamologist said in the next 2 years he would be put on the list. Any input would be appreciated, you can email me as shyausgal@hotmail.com thank you for reading my message..cheers
 
Hiiii i was diagnosed with keratoconus this dicember lile many other head aches and eye aches and fore head aches pluss the blureyness get hard...but lile the doctor said im not going blind even of my left eye is prety advanced i will lile to know what treatment i have available that is not to expensive since im a stay at home mom of two kids......and please doctor keep us updated on any advanses and treatments etc....
 
Hi Hels Dix
I prefer if possible to wait until someone is at least 25 to recommend a corneal transplant. Usually the condition is less progressive at this age and success is likely to be better.
You certainly can have another corneal transplant in the same eye years later. Statistics consistently show that 50% of corneal transplants fail within 15 years and that a significant proportion will require a contact lens fitting for vision at some point. The other 50% keep going for longer than 15 years but will more than likely require glasses or contact lenses to see properly.
Before proceeding to a corneal graft I would make sure that contact lens options have been exhausted by a contact lens specialist before proceeding to a corneal transplant
Best of luck Dr Jim Kokkinakis
 
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