During the second week of September (right after my first neuro-ophthalmology appointment), I was driving to work, which was only about a mile away, on a three lane road. I was in the middle lane and was paying extra attention due to my visual issues. I ended up slamming my brakes because I thought the car on my left was merging into my lane and was going to sideswipe my vehicle. Once I slowed to almost a stop, I noticed that the person was 100% in their lane. Luckily for me and everyone else, there was no one directly behind me.
What probably actually happened is they were coming up on the left and I was unable to see them approach. When I noticed them, they suddenly appeared from my blind spot thus they appeared to be moving to the right. Everyone was fortunate that day that I didn't harm anyone by suddenly braking on a normally busy road.
I am able to legally drive since my visual acuity is still good (multiple doctors have confirmed); however, the visual disturbances and blind spots make me hesitant to drive and are the reason since that day, I have chosen not to drive. Did I ever expect that at the age of 36 I would forgo my right to drive? Never. Was it an easy decision? Absolutely not; however, I was not willing to put others at risk due to my ego and desires.
Giving up the freedom to go where you want, need or to respond to situations is extremely difficult and aggravating. You can ask any elderly person who refuses to give up their license. Furthermore, if you have been to Las Vegas, you are probably aware that we are a completely car centric city. It is a sprawling metropolitan city with limited public transportation. Crossing the city using public transportation can take 2+ hours in one direction. Furthermore, we have limited bike lanes which are often shared-use with car traffic. With or without limited vision, biking for daily transportation is probably not the safest mode of transportation in Las Vegas.
In the first few months of not driving, I had moments of anger, despair, and frustration. When my husband didn't arrive when I thought he should, I would dissolve into anger instead of gratitude that he was willing to rearrange his schedule to help. To this day, 8 months later, I still struggle with this at times probably because I have always hated asking for help for any reason. Additionally, I have been driving since I was 14 years old (grew up in ND and it was legal at that time to get a license with special driving classes) and have always been on the go.
Will I ever fully accept this is my new normal? I don't know and the unknown can be scary. I renewed my drivers license so I could get the real ID and honestly, I will probably continue to renew it as long as I am able to pass the vision test just in case there is an emergency and I absolutely need to drive. Despite renewing my license, I rely on my husband, friends, family when they are in town, and Lyft or Uber when none of the aforementioned are available. Being reliant on others for daily transportation is a new experience that will likely continue to evolve.
After continued left peripheral blurriness, I was sent to one of the two neuro-ophthlamologists in Las Vegas. This doctor appointment occurs in two portions, which typically occur on two separate days. The first appointment consists of a number of visual tests and the second, the actual visit with the physician.
The vision testing included a typical vision acuity exam, color blindness exam, a depth perception exam, eye pressure test, visual field exam (Humphrey Visual Field - HCF), and an OCT (optical coherence test). Interestingly, during this appointment, there was a fire on the first floor of the building and we were evacuated. I was rescheduled later that week to complete my examinations.
During my first visit at the neuro-ophthalmologist, the majority of my initial examinations were normal at first glance; however, with testing in the future, it became evident that my visual field exam had early signs of an enlarged left blind spot. Important to note, that blind spots are normal and we have one on each eye; however, the other eye is able to see in that area so it does not cause issues. Additionally, my first OCT (which takes a picture of the retina) showed a decrease in the optic nerve thickness which was below normal at 65 microns (normal is 70-100) and significantly lower than my other eye which had a thickness of 104 microns.
During my visit with the physician, she listened carefully, took what I was experiencing seriously, and gave words of encouragement. If anyone is reading from Las Vegas or the surrounding area and would like a recommendation, please message me and I will forward you her office info. Due to the reduced optic nerve thickness, she ordered a ton of bloodwork to add to the bloodwork that I had during my hospitalization to help elucidate the cause of the optic nerve atrophy. Ultimately, they took 14 vials of blood and I was tested for the most common causes of optic nerve atrophy including: infectious, autoimmune, immune related, hematologic, metabolic, cancer, and vitamin deficiencies. As well as, a MRI of the eye orbit was ordered.
When I returned in two weeks, my eye exam showed an enlarged blind spot on the left, which with foresight was minimally evident at the first visit. For the most part the blood work was normal. I already knew that I had latent TB (tuberculosis) which was detected again (travel to India yearly), but additionally, I had a folic acid deficiency and some mild leukocytosis (indicative of inflammation) with high lymphocytes (antibodies) and eosinophils (allergy responders). Of note, latent TB just means that you have been exposed to the bacteria and are at risk for a future infection if your immune system is decreased.
The MRI of the orbit showed that I had tortuous optic nerves (zig zagged nerves) and fluid buildup around them. This indicated that the pressure in my brain (intracranial pressure) was likely too high so she ordered a stat lumbar puncture (spinal tap) in the outpatient setting. At this point in time, my physician was concerned that the TB was active in my brain causing the increased pressure and the optic nerve atrophy. The other possibility was idiopathic intracranial hypertension (also called pseudotumor cerebri), which is an increased pressure in the brain for an unknown reason but would account for the enlarged blind spot and the MRI results.
More to come on these tests, optic nerve atrophy, and the next steps.
I have been wanting to write this blog since I found myself able to speak about my vision loss. As with many things in life, I set the project to the side for unknown reasons. This blog will follow my journey, discuss diagnostic exams for vision loss, and treatments that may be beneficial. Perhaps it can help just one person in their own vision loss journey or describe what someone you know may be going through.
On a Saturday in August, I attended a going-away party for a sweet friend at a coffee shop. Afterwards, I drove home and was chatting with my husband. All of a sudden, I couldn't focus my vision on anything. Objects were moving and blurry. It seemed as though everything was oscillating (moving up and down rapidly). I waited nearly 15 minutes before stating anything to my husband as I thought it would just go away. After letting him know, I laid down, rested my eyes, and decided to meditate because I figured it was stress even though I was having a great day which felt stress free. Nothing really changed but I convinced myself that I was okay and my vision wasn't improving because I was so focused on what I was seeing.
I had my own going-away since I had just completed my last day of full-time job as I transitioned to being an adjunct professor and part-time pharmacist. My husband asked if we should cancel, but I insisted we go. At my going-away party, I tried to act as though nothing was wrong; however, I couldn't read the menu (which is a huge problem when you have celiac disease and have to be extra cautious) and the whole world seemed to be moving. My husband helped secretly read the menu to me and assisted me when I wasn't quite sure how to do anything without my eyes. After we got home, we decided I should go to the ER to ensure I did not have a detached retina since intervention for that is extremely time sensitive.
At the hospital, they did not have an ophthalmologist available on a Saturday night and doubted that the one on call would come in on a weekend so they decided to do an eye ultrasound (more to discuss this in the future). The eye ultrasound showed no retinal detachment so they were moving forward with blood work, a CT scan of the brain, and a MRI of the brain. Due to the time of evening, they admitted me since the MRI would not be accomplished until 1am. Nonetheless, all the tests came back essentially normal and I was discharged the next day.
By the second day, the oscillating movement had minimized, but my left peripheral vision was extremely blurry. I got an "emergency" retinologist appointment for that coming Tuesday, which I had a few diagnostic exams completed with no obvious abnormalities. My retinologist thought that it could be an ocular migraine and told me if it didn't improve to come back in a few weeks.
Needless to say, it didn't improve and continued to progress each month, each week, and even each day from there. I will be writing soon to discuss more regarding the progressing of vision loss, diagnostic exams, and information about all of the potential diagnoses that were high probability at one time.