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Post Info TOPIC: Crosslinking, epi-on, mom's blog


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Date: Wed Jul 18 9:57 PM, 2012
Good news. Vision improved.
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Dan started the process of getting fitted for contact lenses today.  So far, the crosslinked eye apparently has improved and the optometrist was able to get vision to 20/30 with just special astigmatism friendly eyeglasses.  The other eye with eyeglasses is apparently not very far off from 20/20. 

The new eyeglasses will be ready for pick up tonight. 

 As for contact lenses, the process has begun.  He found the optometrist very patient and had a quite a few different varieties of lenses to try, including hybrids.  Apparently the lenses improved his vision, but felt like he had a foreign body in his eye.  I don't know if the "foreign body" feeling would go away in time with acclimating, or whether a different type of lens is needed.

Anyway, it sounds like the optometrist is very knowledgeable, well equipped and capable.  He goes back in a few weeks to work again on finding a good contact lens.  He does like and trust the optometrist. So, that is good news.

Also, the improvement with eyeglasses is significant.  So, we'll see how this goes.  I'm relieved.  Okay, so previously the crosslinked eye corrected with eyeglasses to 20/50.   The improvement to 20/30 is significant.  Wonder how that will affect night driving.

So Dan is encouraged and so am I. 

Have any of you found that contact lenses at first feel like a foreign object in your eye?

Thanks again to all of you for being there and offering so many good ideas and support.

Emily

 

 



-- Edited by Emily_G on Thursday 19th of July 2012 12:32:15 AM



-- Edited by Emily_G on Thursday 19th of July 2012 12:42:02 AM



-- Edited by Emily_G on Thursday 19th of July 2012 12:43:16 AM

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Date: Wed Jul 18 10:38 PM, 2012
Crosslinking, epi-on, mom's blog
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Hi Emily,

I, myself, have been reading a lot on KC!

...and I can say, without a shadow of doubt, that really is the kind of appointment a Kcer wishes for!

Able to wear glasses and contact lenses!

The feeling of wearing contact lenses will go away, and if he gets good vision with glasses, usually the contact lenses should not be too advanced/complex (and when this happens the foreign body senstation could need more getting used to)...I am hopeful (as he corrects well in glasses) that more ordinary soft lenses like what I wear might work well (I wear soft toric lenses my self and I have KC which is at the early stages still - luckily!) but then there are soft lenses for KC for mild to moderate cases of KC, where the odds of them working well are good (occordiong to my optician who has got experience fitting them) if "normal" soft toric lenses do not correct well enough. However RGP centered soft perms and RGPs per-say will give the best possible vision, however this might be at the expense of comfort to varing degrees.

I am told on the most part, for KC patients, glasses are not an option...count yourself (your son) *very lucky* he can wear glasses AND he has better vision in them now after his crosslinking treatment!, because he will not have to depend on contact lenses to be able to see well enough to get around! (which can be another can of worms! - my opthamologists says!)

Your updates has been fantasic to read...your son is a patient of the future, not the past! You are a Very caring mom, your son should feel very proud to have a mom like you! smilesmilesmile

Lots of Love

Vicky xxx



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Date: Thu Jul 19 8:08 AM, 2012
Reply and more about 1st lens fitting after CXL
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Vicky

Appreciate your reply!  Whenever I read that something I wrote here has helped or encouraged one of you, I feel very good.  

Just spoke to Dan again.

From what he says, it does sound like the epi-on crosslinking five weeks after treatment has made his eye much better with eyeglasses.  I'll hear more later when he actually gets the new glasses tonight.

As for the contact lenses, the optometrist tried various sizes of hybrid lens.  While they felt strange, he said that he could see better with them in, even though they were not his prescription.   When he tried RGB lenses before crosslinking, his vision was worse and they were painful.  So this is encouraging.  

As I hear more, I'll let you know.

Emily

 



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Date: Thu Jul 19 11:25 AM, 2012
RE: Crosslinking, epi-on, mom's blog
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Emily, just wanted to point out that crosslinking is not just available through clinical trials. There are several ophthalmologists doing crosslinking with both epi-on and epi-off techniques in US that are not part of the trial with some doing it before the trials started.
I am glad your son is doing well after the crosslinking. Best of luck with the glasses/lens fitting.

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Deb


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Date: Thu Jul 19 3:35 PM, 2012
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Emily_G wrote:

Vicky

Appreciate your reply!  Whenever I read that something I wrote here has helped or encouraged one of you, I feel very good.  

Just spoke to Dan again.

From what he says, it does sound like the epi-on crosslinking five weeks after treatment has made his eye much better with eyeglasses.  I'll hear more later when he actually gets the new glasses tonight.

As for the contact lenses, the optometrist tried various sizes of hybrid lens.  While they felt strange, he said that he could see better with them in, even though they were not his prescription.   When he tried RGB lenses before crosslinking, his vision was worse and they were painful.  So this is encouraging.  

As I hear more, I'll let you know.

Emily

 


Hi Emily (and that's a great post Vicky!)

Glad that things are going well for your son and you! We all know how stressful it can be having KC and how our plans can get derailed very easily, but with a mom like you there is very little chance of that!

In the back of my mind I am wondering if they are trying to over sell a overly engineered contact lens for your son when something more simple, less expensive, easier to look after and maintain, easier to buy anywhere could be tried because your sons vision is very good in glasses

Many people who wear glasses and do not have KC, do not always get 20/20 vision in them, and the difference between 20/30 and 20/20 is not going to be really noticeable because the other eye corrects to 20/20 and because often for those who get 20/30 ion glasses, they do not notice this unless they are getting tested with an eye chart.

I would hate for your son to walk way with contact lenses that have been pushed on to him due to seeing the $$$$$ when he walked in to the door!

This might not be the case but it does not hurt to double check/get a 2nd opinion on this from say a ophthalmologist who is medically trained and do not sell contact lenses. Opticians who sell contact lenses are not medically trained and have a finacial interest in optical aids such as in selling more glasses and contact lenses. The thing with KC contact lenses is that you can not buy them online, and to say the least, the prices are inflated.

Going on to the crosslinking result - its brilliant there has been some reversal of your sons KC! I hope there is more to come! there could be slightly more. If it happens then thats a bonus, if not its a great result now!

Best of luck

Debby



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Date: Fri Jul 20 3:22 AM, 2012
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Debby,

Good to hear from you.  I agree that "selling" is often a big feature of KC treatments.   What is good about this forum, is that we can help each other gain some perspective on this "marketing".  Sometimes though, what is being promoted is actually the best choice.

Dan tells me the optometrist told him that his correction with eyeglasses is now good enough that he does not necessarily need contact lenses.  However, he himself is interested in the contact lenses. 

Dan's got a week or so to think about the contacts.  Yes, they are expensive. But he is able to afford them himself.  It's now up to him.  It is good that the optometrist did not do any "selling".

From what my son tells me, the people in this  optometry office seem very likeable, patient and competent.  So, I feel good about them. 

As always, I appreciate your thoughts and ideas. 

Emily



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Deb


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Date: Fri Jul 20 5:19 AM, 2012
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Emily,

I wasn't saying not to go anywhere near contact lensessmile, infact they do have advatages over glasses even for those with normal corneas!

Its just that because he is doing well in glasses is a good sign that his KC is not advanced and therefore I would of thought a less advanced contact lens is very much an options for him.

I am very much in favor of - its the least invasive first when it comes to any treatment, this includes contact lenses.

At the end of the day I am hoping the best for him, and what matters is what your son wants and what is feasable and possible.

Its great that we can convay our hopes and wishes, and I just was wishing for him to be out of the medical loop as much as it could be possibly be tried and with it away from KC just the same, and as quickly as it came so he may resume his normal everyday life as it was before KC came in to his life. Currently the odds are on his side that he will acheive this! smile

Every good wish, Debby



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Date: Fri Jul 20 6:30 AM, 2012
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Deb:

Thank you so much for your good wishes and good ideas!

When you say less advanced contact lens, what do you mean?  Before CXL Dan was fitted with RGB lenses - two tries.  They were very painful and made his vision worse. 

I've heard of piggy back (hard over soft) and soft lenses.  Then, as far as I know, you get to the more advanced and more expensive lenses made specially for KC like synergeyes hybrid CK, or Kerasoft or sclerals.

I wish RGB lenses would work, but I see little hope there.  I'm no expert though.  Is there something else to consider?

Thanks again Deb. 

Emily

 

 



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