Snarky Brides

Keratoconus? Anyone got this too?

Today I went to the eye doctor totally excited to get myself a new set of glasses.  Instead, my eye doctor tells me I have keratoconus.  He acts like he told me this last time I was there, but I swear he did not.  I thought I was getting my eyes mapped last time for my GP contacts.  

I ask him to explain it to me and he says "Your corneal's disenigrating but don't worry, if the time comes we'll get you corneal implants so your won't go blind.  Now, let's get you tested so we can see how bad you are."
That's it!  

I was just wondering if anyone else has this and their experience.

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Re: Keratoconus? Anyone got this too?

  • No, I don't have any experience with this but it certainly sounds like you need to find a new, more supportive doctor!  Scaring somebody with corneal transplants without explaining a disease is totally not cool.  Best of luck to you.

  • I have it. Get ready for a novel:

    First off, corneal transplants are a last resort for keratoconus. So don't freak out too much about that just yet.

    Keratoconus is where your cornea is becoming conical in shape, and not always in the center. The area(s) where the bulging is happening is where your cornea is becoming weaker. Also, the bulging is why even corrective lenses can't quite get you focused properly.

    There's no set determination as to what causes it, but there's some ongoing studies about the possibility of genetics playing a role. When you have it, it typically 'turns on' in the late teens to early 20s. It can progress/worsen for up to about 10 years. Some people have minimal change in their cornea(s) for a short period of time, some will have severe weakening and degeneration over many years. There's really no hard and fast rule as to how small or great it will effect you.

    It tends to show up in one eye first, but as my docs have said, if one eye is exhibiting the condition, the other isn't far behind. So yes, it can/will show up in both eyes.

    GP lenses are the first go-to when it comes to trying to get you to see well again. A soft lens won't fit properly with the way your cornea shape has changed. So since a GP lens is much smaller, and can sometimes be fitted out of the way of the bulge. it's easier to try to get better vision with those.

    If you've worn GP lenses before and are ok with those, that might be all you'll really have to deal with for the time being (possibly ever), dependent on the severity of your case.

    Glasses can be a little tricky, too. Again, depending on the severity of your eyes. There are some special lenses that are made in order to combat the strange focusing that your eyes are trying to do. I tried that, and I couldn't handle it. So I went back to my old lenses (which I'll explain more in a bit). Just be prepared to possibly not have 'perfect' vision with glasses anymore.

    Here's what I went through -

    Initial diagnosis - Keratoconus in the left eye, about a 3 out of 10 on a scale of severity. Right eye was classified more of an astigmatism, but basically early stage Kertoconus. So my opto wanted to, of course, try me out with the smallest step of GP lenses. I've been a soft lens person for ages, so I knew there was going to be a period of getting used to it. After months of trying out different lenses, I couldn't hack it.

    Next step, surgery. No, not transplants ;) INTACS.

    INTACS are small silicone implants inserted into the cornea in order to stabilize and smooth out the conical part. With how my left eye was shaping, I only had to have one implant put in. Two can be put in per eye, one on top, and one on the bottom. But, again, all dependent on your specific case.

    I also had another procedure done to both eyes (C3R), which is a 'hardening' treatment. Basically, it strengthens the corneas and reduces, if not stops, the progression of Keratoconus. That procedure is something that not all docs do, though.

    Since then, I've been able to go back to my soft lenses. My left one is a little pricier being that it's one of those weighted ones that's made for the specific area where my bulging was. In my right eye, I just use a basic weighted astigmastism lens. My left eye went from about 20/200 (with a lens!) to 20/30-35 with a lens.

    My glasses, I just have an identical lens in the left side as the one for my right. My left is my weaker eye (of course) but since the lens I have for my right eye is correct, and that one's trying to 'take up the slack', I don't notice that the lens for my left eye doesn't work perfectly unless I close my right eye.

    Now, about doctors - Definitely check into some specialists. And IMO, go see at least 2 different people. Get a second opinion. The first specialist I went to, wanted to put 4 INTACS in me, two in each eye. He didn't spend a ton of time with me talking about it (and I was clueless about WTH Keratoconus even was at that point) and he seemed kinda unhappy that I even brought FI in with me during one of my consults. The sencond guy I went to (the one I ended up going with) was awesome. His staff was great, his surgery room was impeccable, I got all the info I wanted and more from him. So, of course, moral of the story is to make sure you're comfortable with the specialist before you decide if/to move ahead with anything invasive.

    A couple of resources for you:

    http://keratoconus.com/
    ^ Lost of good info about Keratoconus. Also a video of an INTACS surgery.

    http://www.boxerwachler.com/
    ^ This is the doc I went through. Some good info about INTACS and C3R

    Feel free to PM me with any more questions.
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  • Thank you neeley. I called and set up an appointment with a specialist. I always wore gp contacts as a kid so I have no problem with them depending on how bad my eyes are at this point. I do want to talk to the specialist about trying the hybrids and seeing if they will work better for me.

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