Tag Archives: optic nerves

Seek (It’s always been there)

I think I made a discovery. If it’s not obvious yet, sometimes it takes me a while to piece together clues within the day-to-day activities before it just dawns on me what a surreal possibility could be indeed the happening (in accordance to the repetition clues acted or observed.) As far as my discovery, it is both action on my part first noted by a frustrated, accumulated observation with prior knowledge and experience.

Discovery–visual field tests do not lie. Let me re-emphasize that point: where your visual field test shows black on the report, you have a blind spot. You didn’t see the light flash, so you didn’t click the button, so it shows truthfulness in the results; It is no game boy stimulation. Last thing you want is to read is a “Game Over!” sign. Knowing that I just had a visual field test and even know (previously discussed) where my vision has worsened due to the optic nerve swelling, one could assume that I would note quickly why I was (or can) get increasingly frustrated while using my laptop or parent’s computer. Light sensitivity is now more minimal annoyance as I found a position at the dining room table that suits best…yet even now my right eye is re-adjusting and re-focusing. Some days are just better than others.

My discovery came after an evening of trying to write a letter in Word doc form with a few pictures added at the bottom for my grandparents. I wanted to tell them about the NF Walk and what we (me, Tasha, Chelsea) had done over the weekend. I love writing fun update letters like this to my grandparents! After me and Mom returned from the CO trip, I had done the same thing, but it was not like this past week’s experience. It proves the visual field test true.

The problem of my discovery: my mouse cursor point (in sight on-screen) will just disappear at certain areas of the screen. I had already, months ago, changed my arrow appearance to black and had enlarged it a little, so it should be easily seen. Last week especially, I would be using my computer and mouse–it would disappear. Frantic sometimes if I am in the middle of important work, otherwise, I usually let out my “Mel is frustrated, yet determined to finish!” grunts and continue to make motions with my mouse to see where the arrow causes pop-up action. It’s like playing hide-and-seek.

In my annual making the evening tea ritual, my brain starts to process what has been happening. Mom walks in the kitchen and I bluntly state my profound discovery: “My cursor and mouse arrow disappear in the lower middle section of the screen.” Yep, profound…because at that instant I continued my ramblings in orderly sense–perfectly clear sense: My swollen optic nerves worsened my visual field test blind spot in the right eye at this area, but I have also noticed that vision overlaps–so where it is a blind spot, it is also cataract hazy from the left eye. It is a mind-boggling scenario.

Having this blind spot reminds me of my walk with God. I don’t believe that God hides from me..His presence is always beside me. However, I think that sometimes God chooses not to reveal Himself as a strengthening of faith. When I lose my cursor or mouse arrow, although frustrated, I become more alert to finding even the smallest motion on-screen that signifies where my displaced subject awaits. When I lose sight of what God is doing in my life, I get panicky and frustrated. Seeking Him whole-heartedly, even the smallest motions of faith will indicate which direction I am to follow. And when God chooses to reveal Himself again, it is too wondrous to comprehend.

Amazing Grace, how sweet the sound,
That saved a wretch like me….
I once was lost, but now am found,
Was blind, but now, I see.

John Newton

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For when I will see clearly, again…

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

[Chorus]
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.

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Update!!

Hello everyone.

I would like to take a few minutes to update you on my health. My last MRI and appointments brought up a few questions that my doctor felt needed to be address further by a few specialists: 1) the pain in my right hand due to the tumors growing in the palm on the pinky finger side and 2) my vision as I was (had been at that time) seeing colors frequently during the day. Of course we all see colors, but this was like going from being outdoors in the snow on a sunny day with no sunglasses on to going indoors–that funny green color when your eyes are trying to adjust back to the dimmer light. That is the best I could explain it, but they knew what I was talking about. So appointments were set on November 1st to see a doctor on the Pain Management team (for my hands) and a neuro ophthalmologist about my eyes.

The doctor concerning the pain was very nice. He reminded me of Mister Rogers. 🙂 He listened to all my pain problems and the conclusion came to that there is not much that can be done about the tumors in the hand, except keeping the pain down so that way I can still use my hand as normally as possible without cringing in fear of huge pain every time I go to open a door or pull out a chair or squeeze my shampoo bottles. I have already been on a pain medicine for a while now to help with the pain spasms, but I was given another prescription for a different pain medicine to help with these new different pains. The plan is to see how well this new medicine works on helping my pain (I mean it won’t all go away, but if it keeps it down so I can function that is good) and see how tired it makes me (I also don’t want to be a walking zombie. Been there before, not fun!) Next time I have doctor appointments, if I am not satisfied then there are two other pain medicines to try. So that is all very hopeful. 🙂

At my eye appointment, there were several things that we discussed. For one, my eyes were extremely dry and scratched. So I started eye drops to help with that. 🙂 And two, after they dilated my eyes, they found that my optic nerves were swollen. So, considering my case, the doctor said it is a possible many things, but most important: there is extra fluid in my brain and something is putting pressure on my optic nerves. Then it all gets complicated from there…you don’t know what tumor(s) are pressing on the optic nerve–it could be from the any tumors in the brain or if it could be from the tumor in the spine at the C-3 to C-7 area that is causing pressure and maybe blocking the fluid flow…many different causes. The most important thing was to get the excess fluid out so my optic nerves go back to normal and thus, I stop seeing excess floating colors throughout the day.

I started this medicine that helps soak up the extra fluid in the brain. I already notice a big difference! My eyes are doing much better! I have not seen much color since I started it–only one or two times compared to seeing it everyday all day long like before. The main side affects of this medicine is that it would effect the way carbonated drinks taste…they would taste more metallic. I totally forgot that at lunch last week and pulled out a Cherry 7Up to go with my lunch. I took a sip and about spit it out. I was like “Ugh this is so nasty! Tastes like metal!!!” LOL. I had to throw it down the sink and drank chocolate milk instead. Not drinking any carbonated drinks for a while is not that bad for my diet anyway, so no harm done. 🙂 I go back December 5th for an eye check-up.

And lastly, something that has come up that I have not discussed fully yet with doctors, but I am having much tenseness and pain in my neck and shoulder areas of my back. I think it is due to the extra pressure on the spine from the tumor that had more fluid shown in the last MRI. The new pain medicine has been helping relieve some of that pain. I have to watch my posture as I have been bending more like a person with osteoporosis with my neck strained out as standing up straight causes pain. My parents and I sat down and got a few things from different websites to help with different issues I am struggling with in maintaining independence. All these things are for people who live with chronic pain and weakness. Mom found a rice pad jacket, and it has been so helpful. All I had before was a little 4×6 size pad that I used. The jacket helps release some pain and tenseness in my shoulders. It is comforting. We found some silverware to help me for when I have to cut things, as gripping silverware now really hurts my right hand. Dad helped me find soap dispensers that I can use for my shampoo/conditioner when I shower. We found a device that helps me open my gas tank (right now I use a pair of pliers), a device to help me squeeze my eye drop bottle so I can put my own eye drops in, and I found big pens to write with at the Dollar Tree. All these things out there and available to help maintain independence and I never realized it.

I told my mom the other morning that I felt this time with these changes in my body, we did something about it. Not like we didn’t before, but this time, we took action to find ways to help get around the obstacles. And it was exciting. 🙂 And just the thought to know that I am not alone in this. I may be one of few that has NF2 but there are so many different factors and diseases that lead to the same side effects or weaknesses. Someone has been down this road before me, because these things are available for my use. That is such a blessing. My ten years are coming up in just a few days–ten years ago when I first found out the news that I had NF2. And I thought I was going to die. Now I see, God has only made me so much stronger by His strength. I really can’t explain what I am feeling right now about it–I’ll let you know in a few days. 🙂

~

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