A journey begins- My Story with Keratoconus
A while ago (2-3 years?) I started having a really hard time seeing, everything was starting to blur. I had thought at the time “Maybe I finally need glasses like the rest of the family”. So, although I had no insurance (let alone vision insurance) I went to the local Walmart eye doctor, who my Mom had seen several times for her various pairs of glasses, hoping to get a prescription for cool new glasses.
After running through the usual exam and a few other tests the doctor said “I’m afraid to tell you this but you have Keratoconus, it’s not usually something I see here, it’s pretty rare, so I want to send you to this other doctor.” At that point there was no way i could really afford to see a specialist and the way he referred me felt shady (Which I won’t get into). So I waited.
Finally this year in April my vision had gotten to the point where I could no longer wait. And I finally had insurance and felt brave enough to navigate the craziness of that. So I made an appointment with Dr W (Message me if you want his name, he’s great)who is a well known, very reputable eye doctor and surgeon in the area to get a second opinion.
He did confirm that i have keratoconus, I have it in both eyes, but much worse in the right eye. He showed me the scans of my eye so i could see how they were distorting and gave me two doctors that I could choose from to go see next who specialize in Keratoconus. He mentioned some of the new treatments that were coming out in the US (Corneal Cross Linking among them) and some of the other methods that were out and approved. I finally was getting somewhere! I was excited but nervous! I had to make appointments soon because time is of the essence when it comes to Keratoconus because your cornea is constantly getting thinner and thinner and distorting. Some of the treatments, he told me, require a certain thickness of the cornea in order to even be attempted. I had a family trip coming up but after i came home i made my appointments.
In August I saw Dr. M (the specialist). She was so wonderfully warm and comforting thru my whole appointment. Gave me lots of facts and details but in a very kind way. Dr M ran her own set of tests to reconfirm Dr W’s findings and see the differences since the last appointment. My right eye is MUCH worse than my left and after giving me the details on several options we could go with she recommended we do the Corneal Cross Linking surgery for the right eye. It had just become FDA approved in the month or so before my appointment. It’s been done for over ten years in Europe and several years in Canada.My Dr was also part of the clinical trials during the approval process.
I agreed it should be done. It won’t “cure” my Keratoconus but it is supposed to stop the change in the cornea where its at. I may get some vision back (60-80% chance) but it’s not going to fix everything. If things go well I’ll finally be able to get those “cool new glasses” I was hoping to get all those years ago.
Finally, after waiting for equipment and supplies to arrive, they started scheduling appointments in November and I finally will be having my surgery tomorrow!
I am both excited and scared once again. Excited to finally be able to move forward and eventually see better, scared because i’ve never had any type of surgery before. It’ll be a big day either way. I’m going to try and blog what happens and how things look and feel as i’m going thru the day tomorrow and the recovery afterwards (around 3 weeks). I know I am one of the first patients in the area to have this done after the FDA approval and there’s not a whole lot out there about what it feels like afterwards. I do highly recommend this Reddit if you’re looking for more info and a community to talk to about it.
I’ll be posting more tomorrow, if anyone who reads this has questions feel free to message me!
TL:DR- I have Keratoconus. I’m having surgery tomorrow to help with that. Will write more afterwards.
