“My name is Sherry De La Torre. I am 35 years old, married with three children, living in Santa Rosa, California. I found my best friend at age 14 and we have been together since graduating high school in 1995. We had our daughter in September 1996, married in February 1998, then we had our first son in October 1999 and our second son in July 2007. Almost all of this was gone through while dealing with my Coats disease. We always tell people we like challenges and seem to prefer doing everything the “hard” way.
I’m a quiet, shy person by nature, but after reading other people’s amazing stories, I thought I would get out of my comfort zone and share my story. Most of the people around me do not know my story, unless they were close enough to go through everything with me. I tried to make this story as short as possible, but it’s just a long story that spans over 10 years.
At age 17, while a senior in high school the vision in my left eye was gone in an instant. It wasn’t black, but completely blurry, like looking through an old shower door. No pain, no other symptoms. I had always had perfect vision and never had any medical problems, besides a lot of headaches. After going to see several different “specialists,” and only being told a blood vessel ruptured and as a result the eye filled with blood, which I could not see through causing my loss of vision. I was told that the blood would eventually reabsorb and my vision should return. And very slowly the blood went away and my vision came back, but never back to my clear 20/15 vision. Every few months, this would continue to happen, my vision would be gone and then slowly come back always leaving me with slightly worse vision than the last time. I of course, bumped into things and people a lot, especially the first year, before I learned to walk on the left side of people when possible or give myself more room to make up for the lack of depth perception.
Finally, at age 19, I found a wonderful retinal specialist in my hometown. At the time he was the only retinal specialist in Northern California. He is still my most favorite doctor. He was warm, compassionate and never treated me like just another patient or an interesting puzzle to figure out. This doctor had a few theories for the diagnosis, and we did lots of different tests but he couldn’t make a conclusive diagnosis without surgery, which wasn’t necessary at the time. About six months into my regular visits with this specialist, I suddenly had zero vision. Everything went black. I called the doctor and he had me come in right away to confirm what he thought had happened, a retinal detachment. This changed everything. I was willing to deal with blurry vision, but from the first retinal detachment, my sick eye would now consume most of my life. The pain was horrible. It’s hard to describe pain coming from your eye when it’s not a common part of the boy to feel pain in. I had surgery to reattach the retina and fix as much as they could.
This first surgery confirmed the Coats diagnosis. At the time in 1997, it wasn’t easy to research. From what I found, it was very rare, usually in young male children and usually only one eye was affected. I had several retinal detachments, one right after the other. I was beginning to feel like a permanent patient, with no hope of normal activity. Finally, I had almost a year without a detachment. My doctor said it was possible to go years without another detachment and it could suddenly go dormant, giving me a little hope. My doctor referred to me an optometrist to see my vision could be improved. If I had a stable eye, I even had hope of surgically implanting a corrective lens. This did not work out for me. Using a contact lens with the strongest possible prescription, only gave me 20/200 vision and unfortunately that made it clear that my retina was badly damaged and I had double vision, which I had not been able to notice until the vision was improved. So, we tried glasses with prisms to fix the double vision, which was not successful either. My vision could not be corrected and unfortunately, I continued to have retinal detachments. I even had a retinal detachment happen within days of the previous surgery. It was almost routine for me to have my vision go black in my left eye, head to the doctor’s office and schedule yet another surgery. After all the surgeries and having my lens removed from damage, my vision at it’s best was just light and dark. It was very sensitive to light, tearing and closing at the smallest amount of light. My eye was always sick and hurting with pressure in the 50s on a good day. The migraines triggered by my sick eye became almost a daily struggle and nothing I tried helped. After so many years of trying to keep the eye stable, I was running out of options. In June of 2005, I was forced to stop working. I could no longer function at my job as a legal secretary in a law firm. I had tried every type of eye drop, most not covered by insurance and very expensive. I tried having the medication administered through a needle directly into my eye, but that didn’t help either.
One day my son walked into my room with a band-aid across his eye and said his eye hurt too. It was both heartbreaking and sweet. He was so young, but already he felt my pain and wanted to make me feel like I wasn’t the only one going through this.
My last option was to have the eye removed. I had protested as long as I could. I knew I would most likely not have my eye much longer, as it was only getting worse deteriorating quickly. I had my eye removed on February 2, 2006. I tried to prepare myself for being 28 years old and actually only having one eye. Everyone said it would be better. The only orbital eye surgeon was at California Pacific Medical Center. She was a very nice lady and we went over everything in great detail. My surgery did not go as well as I had hoped. When I woke up from surgery, I was in the worst pain I had ever felt and at this point my pain tolerance was very high. They finally sent me home that evening. The pain worsened and the bleeding increased. Two days after my surgery I tried to go back and see my surgeon only to find out she had left the practice and now lived in Texas! It felt like a cruel joke or trick. My primary care physical was able to figure out that another orbital surgeon was in the area but he did not take my insurance, but after talking with him, he agreed to see me. This doctor is my least favorite doctor, ever. Cold, distant and not a glimpse of human emotion is ever displayed. He said my eye socket was horribly infected and he needed to remove the implant, which is basically a hard round plastic object taking up the space where my eye had been so that once everything was healed, the prosthetic shell would fit better and look more natural. I was in the hospital for 5 days. Three days on antibiotics, which were administered through a PICC line, because the antibiotics are so strong they cause normal veins to collapse, prior to the surgery.
This time, after waking up, my pain was normal, for just having another surgery. The eye socket healed and about four months after I had my prosthetic eye. Honestly, I hated it. I hated seeing myself, I hated when people looked at me. The pain in my eye socket continued, but slowly it got better. I continue to have horrible migraines a few times a month. I also continue to get infections in the eye socket. It’s almost like pink eye, it’s very painful, feels like sand grains are in my eye and green puss oozes out constantly. If it gets really bad, my eyelids swell shut. I had to have two more surgeries on my infected eye socket a few years ago doing a tissue graph to replace the tissue that was damaged. This started the healing process over and I had to go without my prosthetic eye for a few months until I could have another one made to fit the changed dimensions of my eye socket. I definitely did not think after having the enucleation I would ever need another surgery.
February 2, 2013, was my seven-year anniversary of the enucleation surgery and I finally feet at peace with my lost eye. I still struggle with the monocular vision, but I had years to adjust to my loss of vision, which probably helped. Having had binocular vision, it’s hard to deal with balance, spatial awareness, using stairs or worse, escalators. When you have no depth perception it affects almost everything you do. Since I had my driving license prior to my vision loss, I was forced to get my doctor’s approval to drive and then re-take and pass the behind the wheel test, to prove my vision impairment did not prevent me from driving safely.”