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Post Info TOPIC: 15 y.o. son - cxl done - BSCVA 20/125 - now what?


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Date: Sun Jun 13 10:52 PM, 2010
15 y.o. son - cxl done - BSCVA 20/125 - now what?
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My son who is 15 was diagnosed with keratoconus both eyes (Mar 2010), the right one being worse than the left.  He  had crosslinking on both eyes in an effort to halt the progression of this "silient" disease.  Left eye is great and went from 20/50 to 20/25 uncorrected.  However, the right eye being the worst, went from 20/200 uncorrected to only 20/125 best corrected (BSCVA).

The opthalmologist suggests a corneal graft for the right eye. The surgeon (who did the crosslinking back on April 1, 2010) had mentioned previously possibly 1) INTACS or 2) Photorefractive Keratectomy (PRK).  I meet with the surgeon at the end of June. A corneal graft for a sporty teen isn't in the equation as my understanding is that once you have a corneal graft you are unable to engage in contact sports.

Does anyone here have advanced keratoconus?

Has anyone had either the INTACS or the PRK procedure done for advanced keratoconus and what was the outcome?

Signed,
Still Hopeful

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Charmaine


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Date: Sun Jun 13 11:09 PM, 2010
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ccormier77 Thank you for your post and welcome!

How far has your son got with contact lenses ? have they tried many ?

If your sure contacts is not for you or its not possible due to intolance, then there are many options these days. But it depends which one he is the best candidate for after tests and a consultation (have as many as you wish to at any number of centers). Once you know what is possible and you and your son is comfortable then you can go ahead if you wish to.

Read through the topics on the forum, and also use the search function to aid you in your research, but in the end you may opt for a treatment which is nearest to you, its your choice, always.

Best wishes

Wayne

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Date: Sun Jun 13 11:31 PM, 2010
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Hello Wayne,

Thank you for the reply.  Actually since the crosslinking, his right cornea is no longer smooth meaning that a contact lense will just enhance its' rigidity. 

Originally before both his eyes got worse we were trying out RGP however my son was contact lense intolerant as he suffers from dry eyes.  Even with the special drops we were at a loss...nevermind trying to get them in his eyes (as he was unsuccessful).

It was then that his eyesight went from Left 20/25 to 20/50 and right 20/100 to 20/200 in a two-week time frame.  I am very skeptical about inserting disposable contact lenses in his eyes for fear that they will just dry his eyes out and lead to more eye rubbing thus stimulating the keratoconus to come back (I don't know if it can however if excessive eye rubbing with a genetic predisposition the first time led to keratoconus, I can only think that it is plausible it will happen again under the right circumstances).

I am looking through the topics and seeing some parents' frustration and it does provide some relief that I am not the only parent going through this. 

Best,
Charmaine

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Charmaine


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Date: Mon Jun 14 2:16 AM, 2010
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Hello,

Because you have performed crosslinking to both eyes that means that yours sons cornea have above or at least 400microns pachymetry.So because of his age and due to crosslinking,the corneas now have "frozen" you need to balance your options for your son seeing better.


In my opinion dont rush things.His best eye is 20/25 undercorrected now after crosslinking so with correction will get 20/20 or so and that is very good.Meaning that seeing with both eyes open the final image of vision is improved a lot.There is the new IOL toric lense that helps correct the vision to a better point and very simple and harmless to use or topography guided PRK but there is here a risk factor with your sons age.only 15.So you need a top doctor to answer this.

I am not a doctor.But i will say one thing.DONT MESS WITH grafts or other invasive things.There is no escape if you go there.I cant really express well my self in english.Keep your sons precious cornea because with future new technological treatments arrive.grafts are old stuff and with an expiration date.Be cautious.

In Germany they have an excellent background with kids crosslinking so you should try Dresden,Munich and other institutes there.Also Dr Kanellopoulos is a well known top surgeon with high recommendations from anyone in here who has performed combined crosslinking plus topography guided PRK treatment.He was the founder of this combined treatment with crosslinking as a safety net.

I think you should look deep into things and as far as the first step you made with your son you performed crosslinking so that gives you plenty of time to think options for your sons seeing better but with safety and long term.Very important.


Harrys

P.S Tell your son from now not to rub his eyes at all.Thats a rule!!When his eyes are dry you should put eye drops for better surface and if their ichy cold water should help a lot.

-- Edited by Zeus on Monday 14th of June 2010 01:23:47 AM

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nothing else matters


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Date: Mon Jun 14 3:18 AM, 2010
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Hello Zeus,

A sincere thank you for your reply. I will look into some of the names you mentioned as well as research the next best step even if it means staying up all night after work.

I was researching today and have you heard of CK or radiofrequency for advanced keratoconus? I posted something about this in the KC Sciences page. I cannot access the article, just the abstract. Also I posted a video about this newer technique.

If you have any thoughts on it or further direction regarding this viable option, that would be great.

Thank you for the support...it's good to not feel alone (as I did when I made the first decision to get crosslinking versus the conservative and "dumbest approach" in my opinion of wearing RGP while keratoconus is getting worse fast.

Kindest regards,

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Charmaine


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Date: Wed Jun 16 11:26 PM, 2010
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I totally agree with Zeus, a graft should be your last resort. You should definitely try some contact lenses (I would propose finding a good optician, there are too many types of lenses there, some soft among them) and then think about any grafting. Topo-guided prk is a good technique (we both had this procedure, so if you have any questions,feel free to ask) if your son's cornea have enough thickness and KXL is also a new interesting technique.
Every good luck.

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Date: Fri Jun 18 2:35 AM, 2010
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Hello Lars,

With the topography guided prk, what is the minimum corneal thickness needed?  My son's corneal thickness prior to CXL in his right eye was 370 um. 

We are definitely leaving the corneal graft as a last option.

Where did you have your PRK done - was it full or limited?  What corneal thickness did you have pre-op and may I ask your age. I know that after age 30 keratoconus naturally (from what the docs say) slows down.

What was your UCVA pre-op and post-op?

I am weary about putting contacts back in my son's eyes because 1) with much practice, he can't get them in 2) it takes us 1.5 hours for one eye 3) I believe that us not being able to place the contact lenses correctly in his eyes made the keratoconus dry out his eyes and the friction to get them in caused even more irritation and excessive rubbing leading to extreme progression within a two-week timeframe.

Therefore, I am looking into all procedures - weighing the pros and cons. I look forward to hearing your PRK experience - and did or have you had CXL before or after PRK?  Can PRK be done after CXL? (I presume another CXL would need to be done to hold the PRK in place?)

Kind regards,
Charmaine

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Charmaine


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Date: Thu Jun 24 2:03 PM, 2010
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Hi Charmaine,

I've had a limited topo-guided prk combined with CXL in Greece performed by dr. Kanellopoulos. My pre-op UCVA was about 10% in both eyes I think, I don't remember really, but my vision with soft toric contact lenses was close to 50%. I've had this procedure 2 years ago when I was 23.
The minimum thickness is unfortunately 450 um, however you should contact the doctor for details. He used to perform prk after CXL but then switched to this combination at the same time.
You could also see the KXL treatment which is less invasive , although it is a new technique and I have no idea about long-term results and side-effects, I think there is a post here on this operation.
My UCVA now is 20-30% but my BSCVA is 80%.
As for the contact lenses, I would propose finding a good optician who could try different types of lenses, some of them will certainly be less irritating and may give better vision, have you tried the kerasoft (3 or IC) lenses?

Best regards

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