Mayo Clinic Neuro-Ophthalmology Appointment

ERG Testing

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.
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Since I continue to write and tell my story, you can probably guess my vision didn't improve or even stabilize for that matter.  

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