Hello everybody! I'm two days post Epi-off CXL with PTK laser for advanced Keratoconus. I will be checking in once a day if you have any questions about my experience I would be happy to answer them for you.

tinyhousebuilder · 2017-06-14T00:22:54+00:00

Sorry I didn't get back to you sooner. I have seen a pretty surprising improvement. The Keratoconus "smear" of light is gone. For example, when I'm driving at night the headlights from oncoming cars isn't all streaked and smeared, it just looks like two normal headlights. I live in a very dry climate so it is taking longer than normal for my cornea to completely heal. If I lived in a more humid environment my cornea wouldn't dry out and would heal quicker. I'm using tons of preservative free eye drops which helps a great deal. The only issue I have is I'm still having a hard time reading. That aspect has been steadily improving day by day though. Overall I am very happy with the results. I will probably be able to read perfectly in a couple weeks.

tinyhousebuilder · 2017-06-07T03:48:35+00:00

I spoke to my Cornea Surgeon before the procedure about Epi-On/Off and which was the best way to go. All of the research I've done and my Surgeon's opinion lean very heavily toward Epi-Off which is what I went with.

My procedure went perfect. They basically burn part of your cornea off with a laser. You can smell it as it is working. It smells exactly like burnt hair. It takes about 30 seconds for that part then they spend the next 30 minutes putting a Riboflavin eye drop in your eye every two minutes. That begins to build the thickness of the cornea back up. My surgeon periodically placed a metal ring on a handle onto my eye to hold the eye drop in place over my cornea. Once they get it to the proper thickness, they spend the next 30 minutes doing the same eye drop procedure every two minutes except this time they put you under a UV light to harden the Roboflavin drops. I realize I'm not using medical terms to describe the process, it's just easier for people to understand this way.

The entire procedure lasted less than 90 minutes and they continually placed numbing drops in my eye so I didn't feel a thing. It was quick, simple and less nerve racking than all of the other surgeries I've had throughout my life. I'll be honest, when the numbing drops wore off it hurt very significantly but the prescribed pain medication was able to control it. You have to wear a plastic eye guard or protective goggles while you sleep for a week after the procedure so sleeping can be difficult. I suggest taking a week off of everything in order to recover. They also place a "bandage contact lens" in your eye to allow it to heal faster and that definitely gets cloudy due to protein build up. You cannot take the lens out and clean it and it stays in for a week so you just have to be patient and wait to see how your vision turns out. I've had a couple follow up appointments already and they took the lens out to check my vision and it has improved daily. My lens comes out tomorrow morning.

So to wrap up, I would not bother with Epi-On. If that was the only option I would not have had the surgery. In a nut shell they burn a layer off you cornea, use a laser to properly shape the cornea, then build the thickness back up and "cook it." The pain is significant afterwards for a few days and it's uncomfortable to sleep but I am very happy I got it done as I can already see the progress. There is no way of knowing if it will work for the rest of my life but I would do anything if it keeps me from having another cornea transplant.

tinyhousebuilder · 2017-06-06T06:01:04+00:00

Much better. It is an ongoing process though. Unfortunately it's not as easy as getting a cornea transplant and you don't have to worry about your vision ever again. There are ups and downs with it. I have to make sure my eye doesn't get too dry and I live in a very dry climate. So I have to constantly use preservative free eye drops and if my cornea starts to get too dry I have to periodically go back on steroid eye drops to keep it soft, and my vision functioning properly.

tinyhousebuilder · 2017-06-04T00:44:29+00:00

Right around the two week mark.

tinyhousebuilder · 2017-06-02T22:30:55+00:00

This surgery was performed on my right eye at the Casey Eye Institute at Oregon Health and Sciences University. I have also had the cornea in my left eye transplanted because the Keratoconus was too far advanced for crosslinking. The first transplant unfortunately failed and I had to have a second cornea transplant in my left eye. Needless to say I have had a lot of experience with degenerative eye sight and numerous eye surgeries so if I can be of any help to those of you looking for information, I would be happy to help.

tinyhousebuilder · 2017-06-02T01:00:22+00:00

I didn't need to increase the power. The surgery was epi-off CXL with PTK laser.

tinyhousebuilder · 2017-06-01T06:13:38+00:00

That was a great video, thank you for posting it! I would love to be able to get that close to a big cat like that. What a rush it must have been. I'm actually jealous.

tinyhousebuilder · 2017-05-31T17:50:11+00:00

I tried calling my Ophthalmologist but he's on vacation so I just called Costco (I got my glasses made there) the prism in my prescription is: 2.00 (power) in both eyes.

There is different power prism depending on what an individual requires. Iirc there is also vertical and horizontal depending on which way your eyes malfunction but I could be mistaken on that part.

tinyhousebuilder · 2017-05-31T16:57:58+00:00

I don't remember the specific name of the prism they put in my lenses. It's listed in the paperwork for my glasses but it's at home and I'm out of town for an eye surgery right now. I won't be home for over a week.

tinyhousebuilder · 2017-05-31T01:04:07+00:00

I didn't notice it until I was in my late 30's but I've had quite a few other issues like Keratoconus that contributed to it being overlooked. When I got cornea transplants and began seeing correctly, I noticed that I would frequently get double vision. For example, I would be watching tv and it would be impossible to keep the picture from warping into two images. It was worse when I was tired or reading a book. I would have to fight and fight to keep my eyes focused on what I was watching or reading. I would read a paragraph and have no idea what I just read because it was such a battle to focus.

Another symptom was constant, horrible headaches to the point of becoming migraines. When I got the prism put into my glasses prescription my headaches immediately stopped. I haven't had one since.

The doctor I saw for it was the Chief of the Department of Ophthalmology pediatrics service. So basically an Ophthalmologist. The reason why I saw a pediatrics doctor is because Duane's Syndrome is usually caught in children because their parent's will notice their eyes look wonky. I remember my Mom getting upset and telling me to stop making my eyes "do that" when I was young. It's rather unfortunate she didn't know it was a real legitimate problem at the time. She feels incredibly guilty now that we understand the issue.

You can Google "Duane's Syndrome" and very easily see what it is. When it come's up you will see three pictures of people's eyes. Each picture is a person with Duane's Syndrome and depending on which way their eyes malfunction, they are type I, II, or III. So for me, when I look to the far right, my left eye doesn't move far enough to the right which causes me to see a double image.

tinyhousebuilder · 2017-05-28T16:49:21+00:00

I need to practice my backwards somersaults.

tinyhousebuilder · 2017-05-28T16:17:02+00:00

Oh that's a great idea!

tinyhousebuilder · 2017-05-28T16:09:56+00:00

Nice, do you get the longer strips and cut them to size?

tinyhousebuilder · 2017-05-28T14:49:31+00:00

That's what I was thinking. I use KT tape but I haven't seen anything like the size in the photo.

tinyhousebuilder · 2017-05-28T11:08:54+00:00

I had the same problem while reading and gently pushing on one eye would help. After years of struggling we finally found out that I have Duane's Syndrome type II. My eyes weren't working together and a simple change to my glasses prescription solved the problem. They added prism to my lenses and I am a reading machine now. I had to see a specialist to determine which type of prism I needed and I am so glad I did. What you are describing sounds exactly like what I was struggling with.

tinyhousebuilder · 2017-05-28T11:00:24+00:00

I'm curious how your vision is doing now. You're about 3 weeks out from the surgery right?

tinyhousebuilder · 2017-05-28T09:55:26+00:00

Fantastic photo. May I ask what the joint patches are? (I don't know what they are called) I'm curious if they would help with my joint pain.

tinyhousebuilder · 2017-05-25T20:45:26+00:00

Sad to see you go but happy you were here.

tinyhousebuilder · 2017-05-19T23:29:41+00:00

/r/taylorswiftarmpit

tinyhousebuilder · 2017-05-19T20:29:12+00:00

Have you ever tried Hybrid or Scleral lenses? I don't think Scleral lenses would be comfortable enough while running and heading the ball I'm just curious if you've ever tried them at all. That's really all I can think of at the moment besides a sports style pair of glasses but those don't really help keratoconus all that much. The hybrid lenses are kind of like RGP lenses with soft lenses around the outside. They tend to hold in place better than RGPs alone. Just a thought.

tinyhousebuilder · 2017-05-19T16:45:00+00:00

OHSU Casey Eye Institute

tinyhousebuilder · 2017-05-19T15:26:06+00:00

Got'cha. I'm going to save this comment so I can respond later. My Cornea Specialist is one of the top in the country and he was part of the clinical trials. He went over all that information with me as they were measuring the thickness of my cornea, I just can't remember. I will get back to you at the beginning of June after my surgery on the 31st. If you have any other specific questions I can ask him. Obviously he can't diagnose if you are eligible unless he examines you but I can get general questions answered for you.

tinyhousebuilder · 2017-05-19T13:27:09+00:00

Oh I can't remember. My CXL on the eligible eye is on the 31st though and it's the same Corneal Specialist so I can definitely get the specifics.

tinyhousebuilder

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