Hello everyone,
This is my first blog post and I can't wait to hear from the TuDiabetes community. My wife has been diabetic for 26 years. She was diagnosed when she was 8 years old. She has always been fairly stable and since I met her she hasn't had an A1c above 7. We have a 19mo old son. The only problem is that she is facing blindness in her left eye (and possibly right) and none of our doctors can explain why. I am sharing our story for a number of reasons. My first hope is that someone can help us find an explanation (or better yet - a solution) for her vision loss. I am also looking forward to hearing your stories as well. Is anyone else out there experiencing unexplained vision loss?
Note: If you are reading this and you do not have any vision loss, don't worry. One doctor told us that what we are experiencing can be compared to being struck by lightning (1/6250 according to wikipedia).
Here's our story - thanks for reading!
In October of 2012, my wife was first diagnosed with Diabetic Retinopathy. The doctors told us that if this were the 1960s she would be blind within a decade. However, thanks to modern technology, they can treat 99% of the problems that arise due to Diabetic Retinopathy and she would not lose her eye sight. The doctors acted quickly and performed three scattered photocoagulation laser surgeries in both eyes. This treatment is the gold standard for treating Diabetic Retinopathy. Everything with the surgeries seems to go flawlessly. She still had 20-20 (corrected) vision in both eyes and all was well!
In March 2013, my wife began noticing a small 'blind' spot in the very center of the field of vision of the left eye. Her doctor performed OTC and fluorescein angiogram tests, but could not identify the root cause. Everything looked healthy. His only suggestion was that there was a tiny hemorrhage, not visible in the tests, in the very center of her retina (the part that is used for her center field of vision). He told us not to worry and that it would likely repair itself.
Over the next few months, the small blind spot started getting larger. Her visual acuity decreased to 20-40 in her left eye. The doctor could not find anything that could attribute to the vision loss she was experiencing. He did see signs of Capillary Nonperfusion, but not severe enough to cause vision loss.
We decided that would be a good time for a second opinion. In July, we turned to the number three eye institute in America - the Wilmer Eye Institute of Johns Hopkins University. On her first visit at Wilmer, her visual acuity was 20-80 in her left eye. Things were getting worse, but we felt confident that they would identify the problem. Between the dates of July 15th and October 30th, they put her through every test known to man. We saw 5 different doctors 9 different times in 3.5 months. Still no explanation could be offered. There were minor signs of Capillary Nonperfusion, but at the same levels there were back when she had 20-20 vision. This doctor described the Nonperfusion as Macular Ischemia. During all of these tests and appointments, the visual acuity progressively got worse. By the end of October, her visual acuity dropped to 20-250. She could no longer see how many fingers you held up a few feet away.
In November, we turned to the number two eye institute in America for another 'second opinion'. The Wills Eye Hospital at Thomas Jefferson University. While we have not had any luck diagnosing the problem, we have found a very impressive doctor and have decided to make the doctor at Wills our primary Ophthalmologist. Our new doctor said that we should not expect the same problem to occur in the right eye.
Today, her visual acuity is still approximately 20-250 in her left eye and 20-20 in her right eye. We need to keep her right eye healthy at all costs. Unfortunately, all we can do is wait and hope and pray. There are no more tests to run. There are no treatments available. I have read about several experimental treatments for Macular Ischemia, but none of them are approved by the FDA yet. Of course, we would need to get some confirmation of what is causing the problem before she could participate in a clinical trial.
This week, my wife noticed a tiny 'blind spot' in her right eye. We are seeing the doctor tomorrow. We are hoping that there is a small Edema or something that will correct itself or can be treated and that it's not another "lightning strike" starting in her right eye.
Thanks again for reading. I look forward to hearing from you.
-Dom