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Post Info TOPIC: My Crosslinking experience 1.5 years out w/ questions


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Date: Fri Jan 2 1:38 AM, 2015
My Crosslinking experience 1.5 years out w/ questions
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Hey all, 

I was diagnosed with ectasia from lasik surgery in my right dominant eye on my year follow up. 4-6 months later i participated in the Avedro epi-off FDA trial with the 4 min UV time. I was 20/25 and barely qualified for the surgery.

It was very painful the first month or so, otherwise pretty straight forward with follow ups. At the end of the year and as of now, while my KC has regressed a bit, i am stuck with a jarring amount of corneal haze, so that i am 20/60 uncorrected, and 20/30 best corrected.

Part of this might be my fault however, as there was a mix up with my dosage for the steriod drops, and after 2 weeks of recovery i went nearly an entire week without the drops, and did not taper off etc. I got back on them as my eye began to feel very dry, which is when i found out the mistake i had made (stupid doctors, i was there first CXL patient). So this could of contributed to my haze, but i still had slow epi healing time, and i had haze early on that never fully went away.

Recently, 3 weeks ago my left eye which has remained 20/20 started to show signs of ectasia, and as a attempt at prevention, i decided to get epi-on with another doctor in my area. Because i am in the USA and we are decades behind every other country regarding advancement of medical treatments, this was my only option and i figured if i had less chance to not get corneal haze due to a less invasive treatment, all the better.

I had a few questions, apparently i have some bad habbits. I am a 3d artist and work inront of a computer and am required to see very fine detail. Because of this, i tend to have computer vision syndrome and strained eyes (which is why i got lasik), but that is of course worst now that i have ectasia and am forced to rely on my 1 good eye to see clearly as it reamins 20/20 ish. 

I have had two incidents so far during my 2-3 week healing process, one of which was an accident rubbing of the eye (bad habbit), and the other that happened recently was getting something in my non healing eye in the shower and in a failed attempt to rinse it out with 1 eye open, got hit pretty hard with warm shower water in my recovering eye which has caused it to feel irritated and blured. 

Does anyone know how bad tap water is for recovering eyes? The docs said i could have tap water in eyes, but i tend to wash my eyes out alot in an attempt to reduce eye strain. Its a bad habbit but i am worried i might of hurt the healing with the force of warm shower water directly on my eye. Any input?

Regardless, it is to early to tell if the epi-on has worked or not. My eye vision is not as strong and i have ghosting and halos as well as sensitivity to light, but this might be expected on the first few weeks. I am still taking my steroid drops etc. I have been reading here that epi-on has not worked as well as epi-off. I hope it works for me, as this is the only good eye i have left and without it am without a career at age 33. The whole experience has been a nightmare. Getting lasik surgery was the worst decesion i have ever made and i feel sorry for the people who get it done knowing what i know now about how corrupt of an industry it is. Hence why no lasik surgeons have had the procedure done themselves.

Regardless, best case scenario is my remaining good eye comes out ok and the epi- on halts the KC progression. 

T-PRK is supposed to be entering the states soon and my doctors have suggested i consider it for my right eye, but if it does not remove the haze they said it would not be better than 20/30 as it is now with glasses.

I have been reading on the athens protocol and am curious if getting that done would remove the corneal haze and give me a second chance at helping to resolve my vision issues. Technically i could just get the T-PRK done but without crosslinking afterwards i am hesitant. 

To anyone looking to get PRK or epi-off vs epi-on i strongly urge you to research haze prevention. It is probably the most serious issue with CXL and statistics show it has a 10% chance to remain permanent. It really screwed my vision up.

I just wanted to share my story, if anyone can help answer some of the questions i had i would appreciate it, and feel free to ask me any questions you have as well. Thanks.



-- Edited by ScottP on Friday 2nd of January 2015 01:46:48 AM

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Deb


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Posts: 96
Date: Sun Jan 4 10:20 PM, 2015
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Hi Scott,

You have been through a rough time. Most of us have one way or another with our KC, but in this disabling and varying condition.Although reportedly rare, the mild forms are common and at lasik screening it should have been picked up.

There are options still available such as an array of contact lenses or corrective surgery (or both to reduce the visual disturbance and the complex prescription), but there is no one treatment that works for everyone. Thats the trouble with KC and Ectasia. There is a treatment or a combination treatment for a given indivual but you need to seek out the options, have tests and consutations at a place where they provide most or all the available options.

With regards to putting water in your eyes. This is forbidden in the early part in the recover after any eye surgery. However with Epi on this window of time is much shorter.

An Eye Dr needs to check that the disrupted Epithelium has healed before water can be used in confidence on or near the eye.

Keep well

 

 



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Date: Wed Apr 15 1:30 PM, 2015
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Hi Scott,

How are you now, I am a software engineer and also have problems after Lasik. I am considering EPI On crosslinking I'm interested to know how you are progressing.

Thanks





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Date: Wed Apr 29 7:11 AM, 2015
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It's not going well. 5 months post op my vision is worst and more blurry and light sensitivity and glare makes it almost impossible to navigate well at night. I'm convinced the laser used plays a role in the outcome. Most docs in USA are doing only epi on and are using **** lasters recycled from Europe until they get avedro machines. The uv light machine they used on me wS so bright and uncomfortable I nearly couldn't stand it. I think this might of permanently damaged my vision and light sensitivity. My advice is not to do Elpi on, the statement claiming it can do no harm is false. From my experience dealing with the multiple doctors from the two most experienced and expensive clinics in Houston is that they have no idea what there doing or talking about when it comes to this disorder. Go to a doctor in Europe or wait until the FDA finally approves this and doctors have acces to the same treatment and machine/formula options other county's have been using for years.

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Posts: 27
Date: Thu Apr 30 12:15 AM, 2015
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ScottP, I totally agree with your statement! I did choose to go to Europe but encountered my own aftercare difficulties here in the USA. You may have read some of my posts. You forgot to mention the arrogance of these doctors here. And I am very sure that the padding to their own pockets play a huge role in encouraging patients to be their science experiments. It is a win-win for them. But a huge loss for us. I am sorry to hear you are not doing well. BUT, I do know that the epi off takes time to see many of the positive results, so keep the faith in that you may yet see improvements. I will be praying for this for you.

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Executive

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Posts: 151
Date: Tue May 5 9:37 AM, 2015
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There isn't as much studies done of Ectasia and Crosslinking, as there are for KC and with that recovery from Haze can be different

Even PRK after Lasik is prone to create more haze, probably due to the flap being present but it should settle down.

 



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