(C) Daily Kos This story was originally published by Daily Kos and is unaltered. . . . . . . . . . . KosAbility: Two Snow Cones Make You Blind [1] ['This Content Is Not Subject To Review Daily Kos Staff Prior To Publication.'] Date: 2024-09-29 Thirteen years ago I wrote a diary for KosAbility entitled “ KosAbility: Flour, snow cones and blindness.” It was about the snow cone shape of my right eye. It was about the snow cone shape of my right eye. A snow cone and a keratoconus eye. The reference to a snow cone was my youngest son’s description of my right eye when he was about 5 or 6 trying to understand what was different about mom’s eye. . It is a rather apt description as the back of the eye, retina, is the rounded ice and flavoring part and the cornea is the pointy paper cone part. The pointy part of the cornea generally falls somewhere in the pupil area or over the iris. For me it is dead center of the pupil. . A lot of things have happened in the intervening 13 years. But the facts about my case have remained the same. . I was diagnosed first with astigmatism in my late 30s/early 40s. Eventually it became so bad that our optometrist was unable to offer any additional correction in my prescription. That day I sat alone and quiet in our living room thinking of all the implications. I was told to protect my left eye at all costs since that was the only eye I was seeing out of. (I have, except for that holiday dinner making incident.) . In 2003 my oldest son had a paintball accident with a paintball being shot into his eye. He wasn’t wearing any protective equipment at that moment. He was taken to and treated at Massachusetts Eye and Ear Infirmary (MEEI). . During one of his appointments the doctor treating him saw that my eyes were two different colors and had me go to make an appointment with an eye specialist. I did, and I was diagnosed with a word I had never heard before; “keratoconus.” (carrot- a - cone - us). . The difference in color was because each eye, specifically the cornea, was shaped differently. A normal eye and cornea compared to a keratoconus eye and cornea. It is rare, with fewer than 200,000 cases in the US per year. It is also called conical cornea Keratoconus Keratoconus (ker-uh-toe-KOH-nus) is an eye condition in which your cornea — the clear, dome-shaped front of your eye — gets thinner and gradually bulges outward into a cone shape. A cone-shaped cornea causes blurred vision and may cause sensitivity to light and glare. Keratoconus usually affects both eyes. However, it can affect one eye more than the other. It generally begins to affect people between the late teens and 30 years of age. The condition may progress slowly for 10 years or longer. - Mayo Clinic My left eye didn’t show any signs of having keratoconus, and through the years it seemed as that eye stabilized while seeing out of my right eye has devolved to nothing being in focus even an inch from my face. Just specific globs of color, light and darkness. (I go into more description of what I see in the older diary, it’s worse now.) . Through the years I have learned how to compensate for the loss of eyesight and lack of depth perception . Driving in the left lane is a favorite because I can scan easier and nothing then sneaks up on my right or left side. I use shadows to help me determine distance. I stop more frequently at yellow lights when people think I have enough time to go through, and I also wait to turn left longer than many people have patience for. Oh well. . un-aimed/unadjusted headlights these days. And I still avoid driving at night, especially with a lot of people driving around withthese days. In the early stages of keratoconus, you might be able to correct vision problems with glasses or soft contact lenses. Later, you may have to be fitted with rigid, gas permeable contact lenses or other types of lenses, such as scleral lenses. If your condition gets worse, you may need a cornea transplant. - Mayo Clinic My specialist at MEEI did try to fit me with a rigid contact lens, but I couldn’t tolerate it. Any other form of lens was not considered viable. . Since I live outside Boston we decided to get a new ophthalmologist (a group) with admitting privileges at MEEI, nearer to home. We did, but for a while there they would send me back into MEEI because my right eye would beat their diagnostic machines. I just can’t focus on that little red dot, and my eye will unintentionally go looking for it. . If I had had this diagnosis in 1980 I don’t know if I could have finished college, and I actually didn’t, but for a different reason. Now it helped greatly when finishing my degree. . Since I don’t have a diagnosis for dyslexia (because they didn’t do that in dinosaur times) the functional blindness of my right eye actually gave me all the same disability benefits at the two schools I attended. Scanned/digitized textbooks and handouts for my tablet or allowed to use a huge magnifier(since most textbooks and some novels were not yet available for Kindle, etc.), smart pen and the tablet that goes with it, permission to record my classes, audible books (sometimes read by computer. (Please AI make it less boring and monotone), and more time for turning in assignments and doing exams. . I don’t know if our ophthalmologist group invested in new machines that can handle my eye because of me, or they just wanted to get newer, stronger machines, but whatever the case I have not been sent to MEEI for a long time. . Generally I have been very good at making my eye appointments. Last March was a regular check up when they asked me if I had noticed any change in my eye sight. This is a tough question because I have to figure out what is migraine related, because often I have sight issues with migraines whether I have accompanying pain or not. Or if it IS something not right with my eyes. There have been a few times when it felt like my eye lens itself had a steam build up, and I just wanted to wipe it away like you do the bathroom mirror after a shower. I also have to keep increasing the magnification on my computer screen. . I joke that while I’m sitting at my computer in Massachusetts you can read my screen in New Jersey. . My doctor diagnosed me with cataracts in both eyes. Great /sarcasm. Wonderful /double sarcasm. . One of my greatest fears is now reaching me, needles in my eye. It doesn’t matter that my husband and oldest son have had cataract surgery (oldest son for that paintball accident), or if my sister had Lasik back when laser surgery was really really new, or my brother in law has to have needles in his eyes every few months to treat his condition, and they have all told me it doesn’t hurt, IT’S STILL NEEDLES . . . GOING INTO YOUR EYE!!!! . The cataracts are small so we were going to do 6 month check ups just to monitor them. I asked my doctor since we will be in the neighborhood to remove the cataracts if we could do the cornea transplant for my right eye at the same time? If insurance okays it, was the answer. . Six month check up was 2 weeks ago. The cataracts really haven’t changed, but my left eye has. It now has signs of keratoconus. . It didn’t register in my brain, I corrected her that it was my right eye with keratoconus. Then she corrected me, the keratoconus had spread to my left eye. . To save my sight and to try and stabilize my left eye we are moving quickly. There is now a procedure called corneal collagen cross-linking. A procedure called corneal collagen cross-linking may help to slow or stop keratoconus from progressing, possibly preventing the need for a future cornea transplant. - Mayo Clinic x YouTube Video I will have Corneal Collagen Cross-Linking, Friday, October 19, 2024. Here is what the procedure entails: While lying down, you will be given drops to numb your eyes. Your ophthalmologist first removes the thin, outer layer of the cornea (epithelium) . This allows the medication to reach deeper into the cornea. You should not feel any pain due to the numbing drops. Vitamin B (riboflavin) eye drop medicine is applied to the cornea for about 30 minutes. Next, a special device shines a focused beam of UV light rays at your cornea for close to 30 minutes. The light activates the riboflavin in the cornea. This helps form new bonds between the collagen fibers in your cornea. A bandage contact lens is placed over the eye. This helps the cornea heal. The bandage lens is left in place for about a week. Your ophthalmologist may give you antibiotic and steroid drops to help your eye heal. -- American Academy of Ophthalmology “Riboflavin (vitamin B2) drops and ultraviolet light to stimulate the formation of new bonds between collagen fibers in the cornea. This process increases the cornea's rigidity and tensile strength.” — Google AI . I will basically be blind for 4 days while the bandages will be on my left eye and my right eye is still functionally blind. My right eye is not a candidate for this as it already changed long ago. My first follow up appointment is that Monday and then one month and 3 months after that. . My doctor told me that this will hurt like hell. Because any pain with me gets a Fibromyalgia assist. So I am making sure I have a lot of cannabis gummies and Vicodin on hand. I will also be chauffeured everywhere for a little over a week. . It could fail and then it will be a cornea transplant for both eyes. Hopefully before I go blind for real. . 4 year long wound had finally healed! But I was told, not 4 days before, that my . Yay! I think. . . . In the words of the immortal Roseanne Roseannadanna (Gilda Radner), and words which I agree; "It's ALWAYS something!" x YouTube Video
. My youngest son has now graduated from college with a degree in plastics engineering and an interest in prosthetics. (proud mom moment) . I asked google what causes Keratoconus. Here’s what Google AI said: The exact cause of keratoconus is unknown, but some research suggests that a combination of factors may be involved, including: Systemic conditions Certain conditions, such as Down syndrome, Ehlers-Danlos syndrome, osteogenesis imperfecta, Leber congenital amaurosis, and Noonan syndrome, may increase the risk of developing keratoconus. Genetics A predisposition to keratoconus may be present at birth, and people with a family history of the condition are at a higher risk of developing it. Environmental factors Some environmental conditions, such as asthma, hay fever, and atopic disease, may be linked to keratoconus. Eye rubbing Persistent eye rubbing can cause or worsen keratoconus, especially in people with a genetic predisposition. I do have asthma and hay fever, which eye rubbing is a part. I have had Pataday eyedrops for a while to keep my eyes from itching, and me from rubbing. . I am more disposed to the idea that this is genetics, even though no one in my family has been diagnosed with keratoconus. I was exposed to two mutagenics in utero: radiation through x-rays and Diethylstilbestrol(DES). I think these exposures are a major factor. Three of my four children, my daughter, oldest and middle sons, have been diagnosed with astigmatism as they have gotten older. We are watching. x YouTube Video [END] --- [1] Url: https://www.dailykos.com/stories/2024/9/29/2270583/-KosAbility-Two-Snow-Cones-Make-You-Blind?pm_campaign=front_page&pm_source=community_groups_KosAbility&pm_medium=web Published and (C) by Daily Kos Content appears here under this condition or license: Site content may be used for any purpose without permission unless otherwise specified. via Magical.Fish Gopher News Feeds: gopher://magical.fish/1/feeds/news/dailykos/