In previous posts, I had argued about the FDA’s decision to not approve a procedure called “Corneal Cross-Linking” (CXL) and after some little research I quickly became aware as to why it’s not approved in the US. One of the videos that shook me the most was this one: My Life With Keratoconus (truearabhustla). The amount of pain described by this gentleman and other comments from those who went through the procedure was horrifying, to say the least.
The video concluded that even with the surgery, a patient must still wear special contacts called “RGP Lenses”, as the CXL procedure only stops the condition from getting worse, but doesn’t correct vision damage. The lenses are a lot expensive and require a lot of invested time, as it’s usual for a patient to have to return for adjustments at least three times before the correct prescription is discovered.
Of course, those who perform and study CXL make claims that the surgery can improve the eyesight of their patients without RGP lenses or any visual aid, but in my research within the testimonies of many who’ve had the surgery, it seems that CXL either has no change on their eyesight or causes vision to become worse in some cases. Hmm… u_u
My vision is so very important to me, as a writer, and this new data about CXL is less than encouraging. In fact, I’ve made up my mind that I DON’T want the procedure, and perhaps the FDA is correct in refusing to approve it for the US.
There’s still so much about Keratoconus that the scientists and doctors do not understand yet. Genetic research about the disease is still ongoing, which I actively partake in the 23AndMe questionnaires about eye diseases, for their genetic research projects. More treatments are being discovered and developed still.
So, I took a moment to do more research on another option. I came across a procedure called “Intact Corneal Implants”, which has been FDA approve since 1998. I browsed many testimonials from patients who’ve had the procedure and it’s not painful, recovery time is quick.
Best of all, its rate of vision correction is more promising with instant results. Most patients were able to see a lot better a few hours after the surgery. Some gained 20/20 vision, in general most patients gained better vision that required either soft contacts or low prescription glasses to correct further.
I wonder why my eye doctor failed to mention this option, as he only discussed RGP Lenses and CXL, both are not covered by my insurance so it meant money from my pocket that I do not have. And when I explained this to him, he pretty much said that he couldn’t do anything for me and to leave the premises until I had the money.
Obviously, he doesn’t know about Intact Surgery, so I searched around my state of MN until I found a place that could better suit my needs. The Mayo Clinic happens to specialize in Keratoconus and Intact surgery specifically. I’m waiting to hear word from my GP, as I need a referral to get an appointment with Mayo.
I’m not sure if my insurance will cover the cost for Intact Surgery, but it’s the exact same cost as CXL, and I almost have enough money saved for one eye. I’ll ask if it’s possible for them to just care for the one eye, although I won’t have the last $500 saved until sometime next year, due to upcoming bills and holiday season.
Perhaps there is a payment plan or maybe my insurance will cover the costs, I do not know and will not find out until I meet with a doctor at Mayo. Still, I can’t help but to feel hopeful. ^_^
If I must choose one eye to save next year, that’s okay, because one eye is better than none. And… I could quote the badass Spike Spiegel (Cowboy Bebop), “Look at my eyes, Faye. One of them is a fake because I lost it in an accident. Since then, I’ve been seeing the past in one eye and the present in the other. So, I thought I could only see patches of reality, never the whole picture.”
In the meanwhile…. my eyesight is getting worse in more noticeable ways that I can’t ignore or deny. It’s getting harder for me to read the labels and instructions on packages while cooking. Last month, I stood with a microwave meal in the middle of my kitchen, so hungry and unable to read how long I was to set the timer.
I cried a bit, but calmed myself enough to squint very hard. It took several minutes, before I could read that I was to set the timer on four minutes, remove the plastic cover, stir, then place the meal in the microwave for two more minutes. I know the instructions by heart now and skip reading the back for that particular meal. This is only a band-aid to a growing issue.
So, my therapist directed me to a program for the blind, to learn how to read braille. This service will come into my home and label everything for me in braille, including the stove handles, so I can know when it’s on/off without having to guess.
Hopefully, I will get training with a seeing cane as well, as the front steps and any curbside are my known enemies. It’s getting too dangerous for me to wander the outside world, without the risk of breaking my ankle or falling down stairs.
I’m not too proud to admit that I need help. Not anymore. I want to continue to be independent and such services for the visually impaired and blind will make sure I can continue to live my life the way I want to.
And, if there is a group for others who are struggling with adjusting with their blindness, I won’t hesitate to join. It does get tiresome when I try to speak with others about my troubles and they snort, “Well you’re not blind-blind. So, there’s nothing to be upset about.”
It’s highly annoying when some people I chat with want to believe that my vision impairment is somehow no different than their own minor vision issues like astigmatism. I miss my years, when my only vision issue was solved with a new pair of new glasses. If I could somehow get rid of my eye disease and go back to that point of my life, I would do so in a heartbeat. Those were easier days, when I had the diagnosis of astigmatism.
I’m not walking into walls for fun, nor am I having other embarrassing vision accidents just for chuckles. I can’t see, people! It can feel a lot depressing, isolating, scary, and heartbreaking at times. I think it would be helpful for me to speak with others with the same frustrations, who can understand what I’m going through or facing.
The truth is, without any surgery whatsoever, I will go “blind-blind” someday. It’s already starting in that direction, month by month, year by year. It’s uncertain if I’ll become blind in three years or next year, as no one can give me a definite answer about that, other than it will happen.
However… I have a bit of hope. I’m keeping my fingers crossed about my Mayo visit. And perhaps I can adjust my life to this new change, to learn how to live with my blindness for now. I will update this subject, sometime later, as I try this new path.
Thanks for reading! ^_^v