Not even a month had passed since I last saw the surgeon ophthalmologist regarding my cataracts. It was during that middle portion of May that the first correction surgery for the left eye was scheduled for July 1st. It seemed as such a long wait! And yet here we are..the surgery proceeding as planned–next week.
By now, it shouldn’t be a surprise (much) when I next mention that during the past month, my right eye has changed. Like any other change, it started slowly. The cataracts have already effected my vision as far as the blurry haze off-setting my balance and deepening the light sensitivity issue. I have struggled with light in darkness situations regarding the left eye (born with a lazy eye) since we moved here; I had made the decision to stop evening driving shortly after the move. My left eye just could not handle the passing car lights anymore. It was different in Denver: cities know no darkness.
If you recall, I have–at one point in time shortly too after the move–had swelling on the optic nerves, resulting in seeing black spots. As it progressed to larger dots, I saw the ophthalmologist–who presently still is my eye doctor–and he prescribed the medicine that causes carbonated drinks to taste metallic. Not complaining, because as of the past two years, the medicine has helped keep the optic nerves stable. (On a side note: unlike other individuals with NF2, I do not have tumors on my optic nerves.)
What then causes the optic nerves to swell? “Tumors,” would come a reply. Although it’s almost like a trick question, because there is no definite cause tumor in sight (at least for me, since I have no tumors on the optic nerves growing with obviousness alarm.) My body contains many, many, many tumors…we don’t even know how many to be exact. With many tumors growing at the same time, it is difficult to know which tumor causes what side effect. Even when tumors on the MRI scans show “no growth,” but I have increasing side effects (numbness, intestine problems, weakness in balance and strength), we still don’t exactly know what tumor is causing the problem.
When my right eye started changing about a month ago, different to that of the cataract haze, I didn’t think it to be an optic nerve problem. It started here and there, an intense darker fuzz in the eye when it caught a time of light sensitivity causing me to have to pause longer to re-adjust my eye. It only lasted a few seconds at first, but I still got to saying, “Hold on…eyes adjusting!”–so that way the person I was talking to understood that I was no longer lip-reading, but squint focusing back to normal sight.
After the trip to Colorado, the problem started increasing more times a day and I noticed that instead of seeing the typical cataract haze, I was now seeing a tad darker tint of everything. Trying to explain this situation, Mom suggests: “Like a veil?” Mom is so good with words. “Yes! Like a veil!” It still is the hardest situation to explain, but it is not very difficult to explain when you experience seeing in “tunnel vision.” And that is when Mom called the ophthalmologist office at the surgical CEI center where they set up an appointment last week in order to see what is going on with my eyes, based off my rambling adjective descriptions of side effects.
Without even dilating my eyes, the ophthalmologist on the emergency appointment floor noted that the optic nerve on the right eye is more swollen. I don’t understand how they “measure” the growth, but he mentioned that (after taking the density) it had gone from a “2” to around a “3 or 4.” All I know is that this means it grew. The doctor asked if I had any questions–which I didn’t–and as we left, the office there set an appointment for the following day with my main ophthalmologist. Bright and early the next morning, Mom and I headed back to Cincinnati.
I ended up taking another visual field test, even though I had just been in April for an appointment. The hardest part of the test is holding the clicker; I ended in holding it in my hands much like a tiny game boy remote, but grasping the cord with my right hand so I wouldn’t drop it. 🙂 Considering the eye condition, I was a bit shocked when the visual fields showed smaller-than-expected change. The outer and upper rims are areas where changes occurred in both eyes, but the inner middle to bottom portion of my right eye is where you see the most growth of blackness on the chart.
I did have a few questions for my doctor, and then we discussed the next steps. As of right now, he doubled my eye medicine dose per day. Change may occur slowly–so it is hoped that by my follow-up appointment on August 20th that there will have been positive changes and stable optic nerves. I do have one other option for helping release the pressure on the nerve, but it is a small surgery on the outer lining of the nerve; and even though the nerve is not touched, I am preferring no surgery.
This past month…especially past two weeks..has been a test of patience. I get frustrated with my eyes. “I can’t see!!!!” It is becoming my new “Good grief” slogan; but the truth is that I can see…just not how it used to be. And until the day when my sight returns to its former self, I just have to keep focusing on the Lord. I can’t deny that fearful thoughts of blindness has already crossed my mind, but focusing on them causes me to see life through tunnel vision. Eyes of faith oust the darkness and shines the light of hope in its place.
God, my God, I cry out:
Your beloved needs You now
God, be near; calm my fear
And take my doubt
Your kindness is what pulls me up
Your love is all that draws me in
I will lift my eyes to the Maker
Of the mountains I can’t climb
I will lift my eyes to the Calmer
Of the oceans raging wild
I will lift my eyes to the Healer
Of the hurt I hold inside
I will lift my eyes, lift my eyes to You
I Will Lift My Eyes.” Bebo Norman. Between the Dreaming and the Coming True. 2006.