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My brother is 27 years old and was diagnosed with

keratoconus... As we were late...
my brother is 27 years old and was diagnosed with keratoconus... As we were late in discovering it.. He was told that his case is severe and his only option is to go for trsnsplant surgery... Today he did diagnosis again in another hospital and they told him he is not eligible for transplant surgery as it will not affect his severe case and the only option he can do is to insert lens through surgery to stop it from becoming worse and an eye glasses which can do 10% improvement on his case...
do you think it is worth looking for more options? is the case hopless?
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Answered in 2 minutes by:
10/8/2012
Dr. Rick
Dr. Rick, Board Certified MD
Category: Eye
Satisfied Customers: 11,665
Experience: Ophthalmology since 1994 with Retina sub-specialty interest
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Dr. Rick :

Hi. I'm online and happy to answer your question today.

JACUSTOMER-slt6a6gx- :

Thanks for the help

I'm sorry i'm not good with medical terms but i will try to explain it as clear as i can

Dr. Rick :

I would find it difficult to believe that he could not have a corneal transplant. This surgery is very, very successful in restoring vision to patients with keratoconus that can not be improved with special contact lenses (soper lens)

Dr. Rick :

here is a link to these lenses used in keratoconus patients:

http://www.lifestylegp.com/pdf/SoperConeFittingSheet.pdf

JACUSTOMER-slt6a6gx- :

in our country it tookk him over a year to get an appointment with the specialist and that made his vision worse


Dr. Rick :

I would not believe the second person you consulted....that does not make sense to me.

JACUSTOMER-slt6a6gx- :

he will have another appointment with a specialist on saturday

Dr. Rick :

His case is not hopeless..........

JACUSTOMER-slt6a6gx- :

have you met any case where it is so bad that even surgery is not working?


JACUSTOMER-slt6a6gx- :

we are all worried

Dr. Rick :

No. I have never seen a case of keratoconus where corneal transplant could not be at least tried once....

Dr. Rick :

I think you should review this site. It will give you information on what can be done so you know if what the consultant tells you on Saturday makes sense:

http://www.nkcf.org/treatment-options.html

Dr. Rick :

I'm sorry that your bother is having such a difficult time getting the quality care he deserves.

JACUSTOMER-slt6a6gx- :

the first 3 options ... he was told not a chance..

JACUSTOMER-slt6a6gx- :

will the case lead to blindness?

Dr. Rick :

It can decrease his vision to the point where he would be "legally blind", which in the USA is best corrected vision less than 20/200. It would not be expected to cause him to go "lights-out" blind.

JACUSTOMER-slt6a6gx- :

if the other diagnosis with the specialist required him to do the surgery... it needs to be done fast?

JACUSTOMER-slt6a6gx- :

he is color blind by the way... is there a link to the case?

Dr. Rick :

That depends. If his cornea is intact then there is no real rush to do the transplant surgery since he will be getting a new cornea anyway.

Dr. Rick :

No. As far as I know there is no link between colorblindness and keratoconus.

Dr. Rick :

About 8% of men in the world are red/green color deficient (not really "color blind") and this, in and of itself, is nothing to worry about.

JACUSTOMER-slt6a6gx- :

ok so the last option is transplant surgery ... no other option to correct the vision..

otherwise keeping the vision as it is with inserting lens and eyeglasses as was suggested... is that treatment known? what is your opinion on this and is it worth it?

Dr. Rick :

Inserting a lens and eyeglasses may work for a bit but his cornea may continue to change, leading to the need for a corneal transplant in the future.

While I firmly believe in doing surgery after all other options have been tried and have failed, I would think doing surgery to remove the lens would not be as good as doing surgery to replace the cornea.

But, I would be sure to ask the surgeon who wants to go a corneal transplant why some of the other options listed on the NKCF webpage, such as soper contact lenses, intacs stromal rings or corneal cross linking shouldn't be tried first.

JACUSTOMER-slt6a6gx- :

no the other options were not tried... just eye test were they tried the lenses they have...

JACUSTOMER-slt6a6gx- :

he did it first in general hospital ... then in optics center

both tried all lenses then said his case cannot get any lens

Dr. Rick :

That being said, removing your brother lens (like is done in cataract surgery) and just using glasses doesn't sound like a good choice from what you have posted.....

Dr. Rick :

Ok. Sounds like they did try to fit him with special lenses and his case is too advanced for that option to work

Dr. Rick :

Is there anything else you would like to ask me?

JACUSTOMER-slt6a6gx- :

i don't know... we sent the reports to a hospital in another country and they said he can do the normal options you mentioned plus surgery ... but the reports were more than 1 years old ...

JACUSTOMER-slt6a6gx- :

is it possible the time he spent without treatment cancelled the chance of normal treatments?

Dr. Rick :

If you could come to the USA, Wills Eye Hospital inPhiladelphia, Pa would be able to offer your brother World Class treatment. This would also be true of Moorfield's Eye Hospital in London, England

Dr. Rick :

I really can't think of many reasons, from what you have posted, that would cause your brother to not be able to have a corneal transplant.....I really think there is something available that can help him.

JACUSTOMER-slt6a6gx- :

these results were text by his now from today diagnosis

right eye:

sphere +0-5

cylinder -3.00

axis 80

left eye:

sphere +0-5

cylinder: -2.00

axis 100

JACUSTOMER-slt6a6gx- :

what does this mean?

Dr. Rick :

That does not seem like an eyeglass prescription in a keratoconus patient. As a matter of fact, that is a very normal eyeglass Rx that would be seen in a person with moderate astigmatism.

Corneal topography and a complete clinical exam is the best way to grade the severity of his disease.

JACUSTOMER-slt6a6gx- :

aha... ok then... maybe visiting a specialist is the answer here...

thanks a lot for your time... at least now i can explain to mom not to worry too much...


Dr. Rick :

Glad I could help.

JACUSTOMER-slt6a6gx- :

i really appreciate your support

Dr. Rick :

I hope this information was helpful for you. But I do work for tips so I want to make sure you are happy before rating me. If you have another question on this or a related issue feel free to fire away. And please let me know if the rating system gives you any troubles.

Thanks in advance,

Dr. Rick

JACUSTOMER-slt6a6gx- :

thanks a lot

good bye

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Customer reply replied 5 years ago

Hi again Dr. Rick...

my brother has also Lazy eyes beside keratoconus and that what the doctors believe cause the complicated situation... what do you know about the case?

I have the report and can send it to you if you want

Lazy eye can refer to a couple of conditions.
Some people use this term to refer to the tendency for one eye to point in a different direction than the other. The medical term for this is strabismus.
Strabismus can be corrected with eye muscle surgery. If your bother needed such treatment this would be done AFTER any surgery for keratoconus.
Other uses for the term lazy eye refer to a lack of vision that happens when the sight in a child's eye is blocked or blurry. The medical term for this is amblyopia.
After about age 8 there is no treatment available for this condition. If your brother has amblyopia in addition to keratoconus, a corneal transplant will only improve that part of his vision that has been damaged be the keratoconus. It would have no affect on any vision that may have been lost due to amblyopia.
Does this answer your question?
I hope this information was helpful for you. But I do work for tips so I want to make sure you are happy before rating me.
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Customer reply replied 5 years ago

does this mean the treatment he was offered will stop the vision from being worse? they said it will give 10% improvement...

here is the report they gave him today

http://f01.justanswer.com/JACUSTOMERslt6a6gx/2012-10-08_152809_img_8582.jpeg

That is hard to say. It does say that he has damage to his vision from childhood in both eyes (amblyopia) which, as I stated, can never be fixed at this point.
It calls his keratoconus stage 2, but does not give any data to support this fact. Corneal topography is needed to better know what is going on.
They do recommend corneal cross liking, which I mentioned earlier as an option.
With all that you have presented I do not see your brothers condition as hopeless but, I really can't speak to what the doctors feel is only 10% improvement in his vision with treatment.....there is just not enough hard data from what you have posted to comment on this.
I agree with the trip to another specialist on Saturday. I wish your brother the best of luck.
Don't forget, I work to make you happy...and for tips :-)
Dr. Rick
Dr. Rick, Board Certified MD
Category: Eye
Satisfied Customers: 11,665
Experience: Ophthalmology since 1994 with Retina sub-specialty interest
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Customer reply replied 5 years ago

Hi Dr. Rick..

Will it be ok with you for other questions? I still feel there are more areas to discuss since there will be another consulation on Saturday and hospitals here may be presenting their maximum capacity in treating the condition. better treatment might exist in another hospital/country and we are ready for this if it gives better improvement.

I took my mother to the same doctor who did the consultation and he confirmed he has lazy eyes (amblyopia) beside his keratoconus and currently his vision is 20/70.

The operation they proposed to perform is corneal cross linking which will stop keratoconus from progressing and he will keep the vision to be 20/70. Later on they will give him glasses which will give 20/50 as maximum corrected vision.

My questions:

1. Is there other treatments for similar cases?

2. Is 20/50 or even 20/70 vision anough for a person to live normal life? I did read on the internet is that 20/50 is considered mild low vision. but is 20/50 with his condition is the same as a normal person with 20/50 vision? do they see the same way?

3. is it possible that the hospital here does not have advanced glasses for his case? I mean maybe other specialized places can provide lens which can give him more than 20/50.

4. The doctor said that after cross linking. There is no need to do the transplant operation because it will not have an affect. What I understood from our conversation is that corneal transplant will always fix the bad vision (not what is lost). Why they are proposing glasses rather than the operation?

5. Will the vision still decrease after cross linking? Is it true that the vision will stop decreasing after the age of 40?

6. We are nearly convinced that he needs to do the cross linking.. Currently working on papers and insurance and at the same time getting more consultation. does the case need urgent treatment? will a month time affect the current vision?

I might need to update you next Saturday with the consultation report with another physician..

Very thankful for the follow up on this case

Sure. I'll be happy to help you with more questions. Let me address your issues in order:
1. Yes. We reviewed the treatment options before and they remain the same. Collagen cross linking is an very good treatment and makes perfect sense.
2. That is a very difficult question to answer. It is impossible to say how people experience the same level of vision. Will his 20/50 from keratoconus be the same as 20/50 in a patient with a cataract? As far as the eye chart results, yes. As far as seeing the world? Probably not. Yes. I would think he could live a normal life.
3. Probably not. Glasses can not improve his amblyopia and this will continue to be a limiting factor in his vision, even if his keratoconus could be completely cured by a miracle.
4. Surgery can always be done later if necessary. The doctors are doing the right thing: Try anything before surgery and what they have suggested is makes perfect sense to me. From what we have discussed so far, your brother is in good hands as far as I can tell.
5. There is no way to predict the future. Cross liking is not a cure...it is a treatment. His vision may, or may not, stop decreasing. Only time will tell.
6. A month or two delay will not hurt anything at all at this point from what you have told me.
Whew! That was a lot of typing....my poor fingers are tired :)
Does this answer your questions to your satisfaction?
It's safe for you to press the positive feedback button now if you so desire. And, never fear, even after you press that button I don't go up in a puff of smoke -- I'll still be right here to continue helping you at no additional charge :-)
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