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TOPIC: Post Cross-Linking Treatment (And a Summary of my Experience with KC)


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Date: Sat Jun 16 10:29 PM, 2012
Post Cross-Linking Treatment (And a Summary of my Experience with KC)
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I see the forum isn't terribly active--and the category I wish to post in hasn't had activity for two years, but maybe someone on the board will see this (at least, that is my hope).

 

Anyway, I would like to first summarize how my experience with Keratoconus started (before I even realized I had it), and then explain the aftermath of having the cross-linking procedure.

Diagnosed with Keratoconus

When I was in high school my vision began to degrade from 20/20.  Originally I chalked it up to spending too much time playing video games and using the computer.  Several years after I moved out of my mother's house, on a day when I was visiting her, I woke up at her place suddenly with obvious double vision in both eyes.  I've had glasses since high school and 3 - 4 months before this scenario, I bought a new pair of glasses that really sharpened my vision.  Alarmed, I went to see an eye doctor who told me she thought I had chlamydia.  I knew it was an incorrect diagnosis and figured she couldn't help me, so I decided to wait it out for awhile.

Mold was discovered in my apartment soon after and I theorized that maybe it was an alergy of some kind.  I moved out of the apartment and into a new one and continued to try to live my life as best I could with this nasty double vision plaguing both of my eyes.  About a year or so later, I had enough after realizing it was not going away.  I went to the same eye doctor again and she told me she thought it was Keratoconus and sent me to a doctor more specialized in the diagnosing and treating the problem.  After spending several months discussing with him my options and the like, I finally was talked into giving the cross-linking treatment a try.  Little did I know that little waiver I signed that said I could not hold them liable for anything should something go wrong would be a big mistake.  The doctor was very vague and unprofessional about answering my questions (I had many).  He never would give me a straight answer but because so much of my family was very worried about me, I took a leap of faith.

Post Operation

After the treatment, naturally I couldn't see out of my right eye (only had it done on the right eye) very well for several days.  When the healing sured up, I noticed my right eye was extremely sensitive to light.  In fact, looking at even a small blip of light looked like a huge aura, as if staring into the sun.  On one of my post op exams I mentioned this to the doctor and he gave me drops to take for a month.  They did nothing.

Now I am sitting here, several months after the operation, with normal double vision in my left eye from Keratoconus, 4x more blurry vision in my right eye, double vision, and then the huge sensitivity to light that forces me to wear clip-on sun glasses even when indoors.  As far as I am concerned, at this point, I am legally blind.

I can still drive okay, but it isn't a picnic.  My job has become significantly more difficult to do (I am a computer programmer, 95% of my day comprises looking at computer code, which is insanely difficult now days with my vision the way it is), and quite frankly, I am a mess.

I have another (third) post operation setup on Monday, in which I will mention to my doctor that his efforts failed and my vision is much worse.

Other Symptoms

In addition to the double vision, both of my eyes are almost constantly dry.  I always wake up with yellow gunk in my eyes, my eyes always discharge way more than normal (this has been going on since the double vision started), and giving all of these issues, I am forced to almost constantly rub my eyes (which also doesn't help, I am told).  My right eye especially almost 24/7 feels like it has an eyelash stuck in it permanently.

Also, I have no allergies that I am aware of and never suffered from allergies growing up.  Like I said, this all started when the double vision suddenly started.

I guess, apart from wanting to share my tale, I wanted to ask if anyone had any other ideas or suggestions for me?  At this point I could really use it, I am no longer the person I used to be before being blighted by this nasty ocular disorder.

By no means do I think my situation more dire than the rest of you, but I really would be open to any suggestions, ideas, or advice.  My doctor is supposed to be one of the best in the nation (supposedly only 1 of 2 in the US who does cross-linking) and in my experience he has been unprofessional and unsuccessful at helping me with this issue (he even picked up his phone during one of my appointments and walked out for 45 minutes.  He also had one of his staff perform the actual cross-linking on me).  With that being said, I've ranted enough.  Thank you for taking the time to read.



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Deb


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Date: Sat Jun 16 11:36 PM, 2012
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Varwulf, sorry to hear you have had a tough time.

What it Epi on oir epi off crossliunking you had ?

The most studied method is epi off crosslinking, and it does take 6 months for the cornea to settle down over time. Its not used to improve vision only to treat progression if its caught early. Early means at stage one or two, and progression having been recorded.

You could see if custom KC soft lenses wioll work or even RGP contact lenses, however you will need to find a good fitter.

Depending onthe level of KC you could have an ary of vision correction surgery to help you wear more normal contact lenses or even glasses, but most of the options work better if KC is not got to the last stages.

My advice is to look at all the optrions and then get a consultation on them depending onypouyr vision goals and what can be acheived. Its best to go somewehere with all the options so its a matter of picking the right one for you or a combination that best suits your KC to get back your quality of life (instead of the Dr pushing what he has).

Personally I would find out from the Dr why he recommended Crosslinking for you and if you was given a balanced view.

Keep us posted here. When the forum started out many wanted to find a way out for their KC but since that time they are much better off after finding their way here with their research in to the options. The forum grows as and when it does, people come and go. In the begining there was no info. people used this forum as a launch pad and as a safety net.

A word of warning through, (medical) contact lenses get more and more complex...if your kc stable that is half the battle won...but then finding the right contact lens and fit can be a merry-go-round...it might not be easy to find the right contact lens, and there is on-going maintance and costs and you may not be able to wear them all the time, be fustrating and irritating...but try this route to rule it out. And a transplant is the very last options, but there are many options that can be tried which are inbetween these two so you may have uncorrected vision as well as the best possible vision you canm get.

Best of luck

Deborah



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Date: Sun Jun 17 12:05 AM, 2012
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Greetings Deborah,

I greatly appreciate your reply.  I don't know that I could answer your question specifically about Epi On or Epi Off Crosslinking.  It's still a very new procedure here in the United States and I was rather dismayed to discover how much progress has been made in Canada and Europe compared to the States.  Obviously I am happy for the people living in Canada and Europe who can receive treatment and live more fulfilling lives but I cannot understand why my country would work so slowly toward learning more about these new treatments.

In any case, my doctor mentioned that it might take a month, maybe two, before I notice any difference.  He made it sound like to worst case scenario would be that my vision/double vision would stay the same and it would not get any worse.  Unfortunately, my vision did get worse, more blurry and much more sensitive to light (with a great deal of light distortion).  The only positive thing I can say about it is that the double vision part of it is more transparent (though still obvious).

The thing that has me the most curious and confused is all of the itch and irritation that my eyes are undergoing ever since the double vision suddenly started.  I've been told that they were allergies and not related to the KC, but that does not make sense to me.  How could I suddenly one day wake up with KC and allergies that do not go away?

Regardless, I will definitely keep you posted on what happens.  I am going in on Monday for one of the final post op appointments and I plan to look heavily into the contact options.  The only problem is, because of how my eyes are, I don't know how well they would respond to the contacts (the itchiness I mean).

Either way, I am glad to find a forum where I can discuss with people going through the same thing I am.  It does help.  No one else I know knows anything about this, it is apparently 'very new' in the US.

Warm regards,

Kyle



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Date: Sun Jun 17 1:30 AM, 2012
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Kyle:

Sorry to hear that your experience so far with KC and crosslinking has been so discouraging.  How long ago was your crosslinking done?  I have read and heard that it can take three to six months for the treated eye to stabilize after crosslinking. 

Where in the USA are you located?  There are many more than two centers doing crosslinking.  If you go to clinicaltrials.gov and search for Kerataconus and crosslinking, it will pull up many centers around the country that are doing crosslinking as clinical trials.  Some of these centers have been doing these procedures for several years and have individually treated over a hundred cases.  Should you want a second opinion, you might be able to find a center on the list that is near where you live.

Trying contact lenses seems to me the best next step for you.  Since these lenses can be difficult to fit and take a number of tries, it would be a good idea to find someone near you with as much KC experience as possible.  Besides referrals from ophthalmologists, one way to find a good optometrist for contacts is to go to synergeyes.com and put in your zip code to see who near you is fitting these lenses, specifically ClearKone (just for KC).  While ClearKone may not be the best lens for you,  those who fit them often treat many KC patients and likely can evaluate what type of lens is best for you.  Also running a google search for "contact lenses for keratoconus" can give you leads to specialists in this field. In addition, an optometrist who is fitting your lenses could have good suggestions for dealing with the itching and allergies.

My adult son had epi-on crosslinking for KC about ten days ago.  On his behalf, I have done a lot of research.  I hope some of these ideas are helpful.  In three weeks he will begin trying for a fit in contact lenses.  I have referred him to someone I found using the above methods. 

My heart goes out to you.  Having so much trouble with your eyes must be horrible. 

Best of luck!  I hope that going forward you will start to see improvement.

Emily_G

 

 



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Date: Sun Jun 17 9:46 PM, 2012
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Thank you for the response, Emily!

Perhaps my doctor isn't all that he's cracked up to be, since he told me he is one of two in the nation who does this procedure and that only a few months ago it came out of the 'experimental phase' and is now legal to administer to non-volunteers.  I found it quite odd as well.

I hail from Appleton Wisconsin, so finding a doctor who's experienced and has the right equipment is a challenge.  That is one of the reasons why I 'settled' so quickly despite the red flags I had regarding the situation.

I also think contacts might be the best way to go, despite the headache it sounds like they can be.  I do appreciate the advice and direction and certainly will look into it.

Thank you once again, and I certainly hope your son is doing much better after his X-linking procedure.



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Date: Sun Jun 17 10:39 PM, 2012
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Hi Varwulf,

There is variables around an average with the recovery as everyone’s KC is diferent and each person heals differently.

Just like with most things done to the cornea it takes time for the cornea to settle down as there are no blood vessels in the cornea...its been well documented with crosslinking that things get worse before it comes round right again.

It can improve slightly around that time and even after that for a year or more, but not for everyone (if it occurs its a bonus!). However this can only be said about with the only proven way of doing crosslinking and that is with the epithelium taken off. And since we do not know for sure what type you had, and since most of the data is with the epi off method, it may or may not be relevant to the situation you find your self in.

If crosslinking is done in kc, where its advanced already and contact lens wear has become problematic, in the wearing of them (intolerance to contact lenses is another indicater for crosslinking), then it may improve the shape of the cornea (make it more regular) enough to allow for a more better fitting contact lens to be worn and have comfort whilst wearing them as well.

Wearing contact lenses will increase your corrected vision (but there may still be some distortions still, night vision troubles etc), but may take away some more of your uncorrected vision, making you reliant on them even more. You should not wear contact lenses everyday or all day...you will have to allow for this and it could turn in to a "on and off" life but hopfully not!...and there will be good days and bad days with contact lenses etc. There is no one contact lens for KC, no matter what manufactures say. With contact lenses the risks are on going as you put them in to your eyes everyday. Be aware keeping people sick in medical contact lenses makes more money!...some take to contact lenses very well, others do not, and there are plenty of people inbetween *limping along* wearing them! What I am saying is pace your self as there are no "one size fits all" or quick fix's and also KC can very easily be a slippery slope! The best you can do is get the best contact lens fitter and the best ophthalmologists you can – whereby both has all the options to chose from.

Kane



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Date: Mon Jun 18 9:58 PM, 2012
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"The best you can do is get the best contact lens fitter and the best ophthalmologists you can."

Kane


 Kyle:

Glad to hear that you found my reply helpful. 

From my experience, I have one more idea to share with you.  Most, perhaps all, cornea specialists I have encountered here in the USA do a lot of self promotion.  These doctors usually do lasik and cataracts. They have elegant websites with videos and great graphics.  They tend to be geared toward procedure persuasion.  As you make decisions, an awareness and acceptance of this aspect of KC management may be helpful.

That said, having one eye crosslinked right away was a good choice, in my opinion.   It sounds to me like you had epi-on crosslinking.  It is not a difficult procedure to perform.  Most likely your ophthalmologist capably performed this treatment.

Coming to this forum for advice and support can give you perspective as you go forward.  With KC, unfortunately, uncertainty is part of the condition and the treatments.  You have many potential options for improving your vision.  With eyeglasses, what is your vision?

Good luck to you. Patience, research and contact lenses seem like the best next steps.

Emily 

 



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Date: Sat Jun 30 9:50 PM, 2012
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I am just curious where everyone in the USA got their crosslinking done at. I am looking into the procedure and researching Dr's and would love to get feedback on where everyone has went before.

Thanks
Christie


www.myjourneywithkeratoconus.weebly.com
https://www.facebook.com/MyJourneyWithKeratoconus

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