Earlier in the year, we scheduled a trip in November to see my husband's family in India (my step-daughter lives there so we go yearly); however, we debated whether to go for months due to the situation with my eyes. We had already cancelled our personal vacation to the Maldives that we had added onto our visit to see his family (since we were able to receive a near full refund) but were unable to receive much of a refund for the India trip. Ultimately, since Mayo clinic gave me no answers, treatments, or next steps, we decided to go. Moreover, since my father-in-law is a physician, we knew I could receive care if absolutely needed. Knowing that whatever I was experiencing with my eyes was likely rare, my husband thought seeing a few specialists in India may be beneficial since the physicians there see such a high number of patients in comparison to the USA.
While there, I ended up seeing two neurologists. The first one did some neurologic exams which were mostly about equal strength and evaluations for movement disorders. As expected, these were absolutely normal. Also, he reviewed some of my testing from the USA and thought that perhaps my enlarged blind spot was due to a lack of focus during the exam. I attempted to tell him that the visual field test checks the position of my eye and focus every 15 seconds during the exam and scores it. I had perfect focus throughout the test and it was reproducible at different clinics and different time periods. Ultimately, this physician stated that I was just too "stressed". If you know me personally, you may have just laughed at this statement. At work and in multiple other situations, I am often looked towards to provide a calm and rationale presence. Oh well, another unsuccessful visit.
The second neurologist came to my in-laws family house and was very thorough in his physical exam and questions. While he wasn't able to determine a cause based on his exam, he did recommend a number of testing options to help rule out a number of additional causes that weren't previously considered. Many of these recommendations, we ended up doing when we returned to the USA. More on these results in a future post.
Finally, we visited my in-laws spiritual advisor, also referred to as a swami. Each time we visit India, we do go to the temple and perform rituals to bring good fortune to our family. This time the focus was on me and my eye health. First, I was weighed in relation to jaggery (a type of cane sugar), which was purchased as an offering to the temple. Then, I was to do 14 circles around a portion of the temple and give an offering to the gods each time we did a circle. From there, I was to stare at one of the Hindu gods and was asked to close my eyes. Swami then poured water into his hands and splashed the water onto my eyes. While I used splashed as the descriptive word, it would be better described as throwing the water at my eyes with shockingly good aim and force. This occurred two additional times with a Malayalam (one of many Indian languages) prayer or mantra (repeated words). Afterwards, my husband and mother-in-law were told that my eyes would heal. Swami speaks limited English so the majority of his instructions are translated through my family since I do not speak Malayalam despite multiple attempts.
You may be asking how my eyes did during this month since the majority of the discussion has been on the appointments. During November, my eyes progressively and substantially worsened. During this time, the floaters went from a few at a time to hundreds. I begin to see near constant clouds (or what could be described as fog or smoke) floating through my vision. The scariest thing that began to happen was that lights would appear to flicker on and off. My vision would go totally black and disappear for just a moment but this started happening multiple times a day. Furthermore, I began to have a spot in my vision which was moving and present in both eyes at the same location. When not focusing on it, it looked as though the spot was blinking, but with focus it was squiggly lines moving from the outside of a circle to the inside of the circle. This spot was most evident when looking at either the sky or a body of water but was always constantly there. Needless to say, my eyes were not improving and I began to worry that I would completely lose my vision if we couldn't figure out the cause. Since I am nearly deaf in one ear (which has been present since I was a child) and I use my vision to read lips to supplement my hearing, this truly terrified me. It felt as though if I lost my vision, I would lose a majority of my hearing at the same time.
After a few strings were pulled, I was able to get an appointment with the neuro-ophthalmology department to see one of their fellows on November 1st, 2019. During this appointment, I had brought an entire list of dates and things that I began to observe with my vision as well as explained to the best of my ability what I was seeing. As you would imagine, describing abnormalities in vision is not all that easy, but I did the best as I could.
Throughout the appointment, the fellow had great empathy but seemed to be focusing on symptoms that actually didn't bother me not did I bring up. For example, prior to my lasik surgery, I had extensive halos around lights at night but since I had that surgery in 2015, this was significantly reduced. So when she asked about halos, I stated yes but not bothersome, but this became the focus of the appointment rather than the loss in left peripheral vision, flashing lights, fog or clouds rolling through my vision, and extensive new floaters.
Nonetheless, they performed a few of the diagnostic examinations that I have had in the past including the OCT and visual field tests. My OCT was still normal with some difficulty obtaining the photo in the left eye as usual. My visual field test had an enlarged blind spot on the left as it had a few weeks prior. Furthermore, there were a few areas of nonspecific blind spots. After they performed these, they decided to look at the cornea (transparent part of the eye) closer to ensure that my lasik flap did not fail. With this exam, my lasik flap was normal but I had a few abrasions due to dry eye on my cornea.
After these examinations, the fellow saw me one additional time that day and more or less stated they had no explanation for what I was seeing. Perhaps my dry eyes were causing my blurring and if it got worse to come back. I asked a number of questions to redirect the conversation and advocate for myself, but this got me no closer to answers or further care. Needless to say, the worsening was why I was already there and which was an insult to the two physicians who had referred me to this department for more testing.
I was visibly upset when I left but as soon as I told my dad who what the outcome was, I broke down in tears. Ultimately, I bought a flight home the next day since I wouldn't be getting any further care. My brother-in-law wanted to try to see if I could somehow be seen again or contact patient services. I declined since it was an extremely disappointing experience and for the first time during the process of losing vision, I felt as though someone thought I was exaggerating or making up what I was seeing.
That evening around 7pm, the fellow called me after she discussed my case with her attending physician and he had recommended more testing as it could be a disease called AZOOR. They asked if I could stay to have the testing done the next week. Although I had already bought my flight home and it was less than 24 hours before the flight (so couldn't cancel for a refund or rebook), I decided to stay since they wanted to do 1 of the 2 testing that my Las Vegas doctor had sent me to get completed. Interestingly, my grandmother has AZOOR and has gone essentially blind in one eye. This disease is not thought to be genetic but often occurs in young females.
The next week, I had a manual visual field test performed which still showed an enlarged blind spot. As well a specialized OCT looking at a different layer of the eye. This specialized OCT didn't show any obvious abnormalities other than a mild thinning of the optic nerve on the left. The final diagnostic exam I had was an ERG (electroretinogram) which is like a EKG for the eye where they look at the function rather than the structure of the eye. This exam takes a few hours and is relatively uncomfortable, but manageable. This was one of the two exams why my Vegas doctor sent me to a tertiary center. Ultimately, the results showed no obvious defects (more on this on a later date...)
After all the diagnostic exams were completed, I meet with the fellow again and she offered reassurance. She stated it was unlikely but not impossible that they are missing something that is subtle and subclinical at this time. I was to contact them if there was worsening or new symptoms, but she was optimistic that I would improve.
Since I continue to write and tell my story, you can probably guess my vision didn't improve or even stabilize for that matter.