Keratoconus: Not the Worst News

"Well Mr. Johnston, I don't think this check up is going to be as simple as you'd hoped."

I felt the hair on the back of my neck stand up. Doctors always make me so damn nervous, mostly because you never suspect that something is wrong until they tell you. They give you problems you didn't know you had.


"We couldn't get a good reading on the surface of your eyes because we think you have something called Keratoconus."

"Is it serious?"

"It can be. Luckily, it seems we caught yours early. We'll need to get you glasses, contacts, and we're referring you to a specialist. Have you ever worn contacts before?"

"No, I haven't. My girlfriend does though, like the ones you can roll up in a ball they're so soft. Am I getting those?"

"No. You're getting rigid lenses. Basically hard contacts. They were what people originally wore, before soft contacts became popular. They'll help reshape your eyes and flatten them out, how they need to be."

"Will this stop them from getting worse?"

"They should. If not, there are surgically implanted 'intacts' that slip right in your eye and also flatten them out. Or you can undergo cross linking. Basically strengthening your eyes with riboflavin."

"I see..."

I walked around the mall while they got my rigid lenses ready. Would my vision really get that bad? Had it really been that bad? Was this just some scam to get extra money out of a patients pocket? Glasses were expensive enough, but $250 for custom, uncomfortable contacts? Ones that required special solution and manual cleaning no doubt. What a pain.

"Alright Mr. Johnston, we'll just be numbing your eyes for the first time you put them in. After the drops wear off, you'll definitely experience some discomfort."

"Great."

The doctor's latex gloved hand popped in the left, and then the right. My vision suddenly seemed better. So much better.

"Wow...I-I didn't really..."

"Realize how much it had affected you already? A lot of keratoconus patients don't. Your blurred vision should improve with continued wear, as well as that nasty light refraction problem you've been having."

Tail lights at night looked like they had threads woven by drunken spiders trailing off them. Now I knew why. And signs that my headlights bounced off of didn't seem quite so bright, and there wasn't any doubling.
Even though a doctor may deliver the bad news, at least they have a way to help. Sure, rigid lenses can be annoying, and seeing a specialist frequently is a pain.

But at least we're able to get these kinds of treatments and information for a condition that I'm guessing a lot of us never heard of before we're told we suffer from it. But there is help. And with that help, a community of people, also suffering from the same condition, that can offer great advice, and provide a steady backbone of support for each other.

5 comments:

  1. https://vimeo.com/70517460

    This webinar answers most of the questions I had in 2013, as I was losing my vision to Keratoconus.
    Diagnosed in 1988, wore RGP contacts for 25 years. Treated by Dr Brian Boxer Wachler in 2013 with INTACS and Holcomb C3R Collagen Cross-Linking EPI-ON and 'CK' Conductive Keratoplasty in 2014/15 (my choice) to clear up slight blurriness rather than wearing glasses.
    Vision went from 20/100 to 20/40 left & 20/32 right. Initial 3 day visit to California has changed my life and I highly recommend Dr Brian Boxer Wachler and his procedures.

    310-860-1900 Boxer Wachler Vision Institute

    ReplyDelete
  2. Wait, those lines we see from headlights aren't normal? I thought everyone saw those

    ReplyDelete
  3. Lines from headlights that look like a Starburst are not normal for most people.
    Also the single white(or yellow) line in the middle of the road should look like one single line, not two which is known as the Ghost effect/ Ghosting.

    ReplyDelete
  4. Bob~ what did the procedure cost for intacs,C3R,and CK in both eyes? Thanks for sharing your vision data points too.

    ReplyDelete
    Replies
    1. It is really important not to wait for Keratoconus to get worse before seeking treatment. My mistake was thinking I’d never be able to afford it, so I waited...which is my only regret.

      April 2013 INTACS & Holcomb C3R (3 day visit; 1st day-initial visit/eye exam); 2nd day-two procedures/surgery; 3rd day follow-up and go home)

      The INTACS ($9000) are FDA approved and were covered by my insurance. The collagen cross linking epi-ON ($6800) was not covered by insurance but the cost including travel was added to my annual medical deductions on my tax return. Between the CareCredit 2 year interest free loan through Dr. Brian’s Office and a credit card it was worth it to see again!

      I sent my medical records to Dr Brian for evaluation and received a plan of action along with a list of procedures and current cost.
      My expenses were paid out of pocket by me to Dr Brian at time of procedures. I was given all the paperwork to submit to my insurance company- I had called them prior to making my arrangements to verify covered and non covered expenses.
      INTACS are FDA approved.
      Collagen Cross-linking Epi-On (Holcomb C3R) not FDA approved but this stops progression of Keratoconus and Dr Brian's method is painless. No scraping the epithelium off. I had these two procedures done in 2013 and was able to see better the day after surgery. Back to work right after and got my confidence back driving immediately! Worth the cost!

      I also had CK (conductive keratoplasty) ($7000)
      I chose to have this done in May 2014 to clear up slight blurriness. This procedure was not needed in 2013, but could have been done at that time if it was needed.

      I have read that even though the FDA has approved CXL, Crosslinking by scraping off the Epithelium, it is not covered by insurance, as many assumed it would be.

      Hope this helps!

      Delete