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


Senior Member

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Date: Sat Jun 9 5:52 PM, 2012
Crosslinking, epi-on, mom's blog
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Emily, was he given eye drops to use for the pain ?

Patients usually are only too happy to go back to their lifes after finding an answer to their kc! But remember crosslinking is not used to improve vision, its used to treat KC progression when its been caught early.

I hope the healing which going on settles more soon.

My best to you.

Deborah



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Date: Sat Jun 9 8:29 PM, 2012
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It is early morning here, second day after treatment. Dan's still asleep. I am awake, worrying and hopeful. Yesterday he said his vision in the treated eye was about the same as before, possibly a little better. So that is good. How I wish there were published and documented studies in the USA! His diagnosis of KC was only three months ago. As an informed, grown man, he made the decision to have this cxl epi-on procedure. As an informed Mom, I made the decision to be supportive and do my best to contain my anxieties. Hello out there - tell me some success stories!

Confession here: as a creature of the Internet (probably a little older than most), I have done extensive web research about KC. And, I have made about half a dozen phone calls to centers of clinical trials for cxl USA in search of the best possible information. There are family members who have described me as overly obsessive. As I see it, I am just a Mom, well aware of the nature of this condition, doing her best to assure my child the best possible outcome. Dan's done a lot of research too. Yet I think, driven by maternal instincts (never mind that he is an adult), I think I have been able to ask questions and get answers that contribute useful information to his treatments.

At a later date I will share some of my findings. For now, I will get dressed and face the day, doing my best to go on to other things. And when Dan awakens, I hope this will be a better day for him.

Grateful for all of you being here,
Emily

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Date: Sun Jun 10 3:38 AM, 2012
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Good news!  Dan is awake and not in pain.  That is a relief!  I hope as the day progresses the pain doesn't return.  He says his vision with glasses is blurrier than it was before the procedure.  But that is probably to be expected.  It looks like he will return to his own home later today.  Then I guess it is a matter of time, 2 weeks to 6 months before we can tell what the true outcome of this CXL-TE is. (crosslinking-transepithelial also known as epi-on).

Thanks DEB for your encouragement. He did receive four types of drops.  The one that relieved pain was only to be used on the day of the procedure.  After that, the three other types did not help the pain. Anyway, it looks like he is much better now.

Emily

 



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Date: Sun Jun 10 9:09 PM, 2012
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Dan's gone back to his home, apparently pain free (thank goodness!). At last report his vision was still blurry in the affected eye.  He'll be back in a few days for his one week checkup.

Right now I feel physically and emotionally exhausted, relieved and uncertain.  I know that a good result means having his vision be the same as before the procedure.  However, a large percentage of people having this procedure report improvement.  Naturally, I am hoping for improvement. 

He jokes that he will be seeing 20/20 with eyeglasses in a a few months.  His first two tries with RGP contact lenses failed.  They both reduced his vision and hurt.  He hates the idea of contact lenses.  

Regarding contact lenses, I have done what Mom does best in this situation, research.  I have found someone in the city where he lives who specializes in contact lenses for KC and who is prepared to try various fittings and types of contact lenses.  I am thinking the ClearKone hybrid might work for him.

Fortunately, I am not the only one recommending contact lenses.  When he is ready and asks, I will give him the optometrist's name and number.   He knows I have done the research.

Now I need to find ways to go back to my own life and cope with the uncertainty and fear.  Dan's a very accomplished person, at the beginning of a promising career.  I am well aware of the potential devastation of KC.

If the stages of KC damage were rated on a scale of 1-10, his ophthalmologist has said that he would be a 2, early stage KC.  So it is realistic to have lots of hope.  It is possible with crosslinking and contact lenses that he could get to near 20/20 vision.

Under the circumstances, I guess I am being a good enough mother. 
Coping with my own anxiety and fear is very difficult. 

I am very grateful to be able to come here to blog, knowing that you understand.  Also, I like to think that some of you will benefit from some of the information I am revealing.

Emily



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Date: Mon Jun 11 1:29 PM, 2012
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The Soothing Power of Knowledge

One way I have coped with the trauma of my son's diagnosis has been to become as knowledgeable as possible about KC.   Up against a condition that is unpredictable and potentially devastating, I have found that learning as much as possible calms me down, gives me a feeling of having some control and offers me a sense of direction. 

I will share here some of the information that I have found most useful. Also, I will include questions that I am finding difficult to answer. Please feel free to comment.

Contact Lenses - Contact lenses are the best choice for improving vision in KC.  Prepare to try different types of lenses and different fittings of the same type of lens.  You must find someone who specializes in KC contact lens fitting (not an easy task), or at least someone with the skills and patience for difficult to fit cases.

Certainly there are some with KC who get fitted easily with RGP (rigid gas permeable) lenses.  But many have to try different types of lenses and different fittings.  It is important to keep going with the lenses.  Just because the first few fittings don't work, or because the lenses that once worked no longer work, doesn't mean that there isn't a fit for you.  Also, new types of lenses are being developed all the time.

For most KC patients the optics of hard contact lenses or hybrid (hard & soft combined) work to improve vision dramatically better than eyeglasses.  For KC, these are therapeutic lenses. 

As a reminder, or new information here - some of the types of lenses that can work are RGP, Hybrid, Piggy back (hard lenses on top of soft lenses), new types of specially designed soft lenses, scleral lenses. 

While some cannot be helped with contacts, most can.  Finding the right contact lens specialist and persistence are key.

And then there is the financial cost of these lenses.  For now, I will assume you can afford them.  Still, different "experts" charge different amounts of money for the fitting of these lenses.  Ask about the cost and be sure you are dealing with someone who can contain the costs.

The costs of lenses and treatments can be significant.  I do not have the answer here for dealing with costs beyond what you can afford.  But that is a question I will put out on the forum at a later date.  I have read many questions about afford-ability and so far not found great answers.  But this question merits much more research.

Getting this knowledge and sharing it helps me.  I hope I have said something that helps you too.

Emily_G



-- Edited by Emily_G on Monday 11th of June 2012 01:34:31 PM

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Registered Nurse

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Date: Tue Jun 12 5:50 AM, 2012
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Hi Emily,
I hope your son is doing well now that he is a few days post-op. Everyone's recovery can be totally different. The bandage lens is used to keep you more comfortable but it doesn't reduce all the pain, it just keeps you more comfortable than if you were to be without it. The drops are different place to place. Usually an anesthetic drop but that would usually be just for the first day and an antibiotic drop but that would not reduce pain. Keeping your eyes closed will definitely reduce post-operative pain the first day, sleeping as much as you can. I always advise the more sleep the first day, the better!! But unfortunately with the procedure there is always pain expected for the first few days. Some people are luckier than others and find the post-op recovery a breeze. Get him to go around with a good pair of sunglasses the first week as that will help to reduce the annoyance of glare from the sun! Lubricating drops will be great to put in if he feels any gritty feeling in his eyes as well, which I am sure he is probably being put on. You can't really go overboard with lubricating drops. The more the better! And I wish him the best!

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Date: Wed Jun 13 3:57 AM, 2012
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Thanks for the reply Isobel. 

It is six days after the procedure now.  Dan tells me that there is no longer discomfort or pain in the eye.  However, his vision is now equally blurry with and without eyeglasses.  At this point, the vision is worse than before.

From what I read, it is not unusual to have the vision be worse for the first few weeks after the procedure.  However, it gives me heartache and fear. Please tell me this is normal and will likely resolve in a few weeks !

Tomorrow he comes back to my city and will have his one week appointment with the cornea specialist.  I'll let you know what happens.  Now I need to struggle a bit to hold on to optimism. 

Emily_G

 



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Registered Nurse

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Date: Wed Jun 13 7:16 AM, 2012
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Hi Emily,

Yes it is totally normal for his vision to be blurry. Around 4-6 weeks post-op, it starts to get back to what it used to be. And it is a fluctuating recovery so some people might find three weeks down the line, their vision is quite clear and then the next day it might be blurry again. That is totally normal to expect. It is just the first week is the worst, but totally normal.

Also it is important to remember that corneal cross linking does not improve the vision but slow/stop the development of it. Once everything has settled after his recovery they can look into contact lens care etc, whichever his ophthalmologist sees best for him.

I am guessing you might be in the USA (I think I remember you saying it from a previous post) but there is no reason to be so worried, I know it is still going under FDA approval there. I know it is a natural reaction as a mother as well. In Ireland, where I am based, the procedure it totally recognised and also covered by nearly all the health insurances. I am a scrub nurse for the procedure about 1-2 times a week and it all sounds like he has is having the most normal recovery.

Keep us updated, I am interested to know how his recovery is going!

 

Isobel



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