The Whole Story: Part Seven - How Many of you are There?



    Prior to my brain surgery, but after the sinus surgery, I was playing a puzzle game on my phone, when all the sudden all of the numbers doubled. 1s became 11, and 2s became 22. It only lasted for a few hours, and then settled into more of a blurriness than a double vision. I likened it to wearing 3D glasses when you were not watching a 3D movie. That was pretty scary for me. I'm an extremely visual person, and to have something so inherent to my experience of life shift so drastically, frightened me. It was the main reason why we ended up in the emergency department for 10 hours the next day. 

    So, when I woke up after surgery with double vision, it felt like the bottom dropped out of my world. Of course, I hoped at first, that it would just last a few hours like it had before. And then I hoped for a few days. And then I began to lose hope. It is as if the focal points of my eyes are misaligned. One image is upright and makes sense, but there is a secondary, superimposed, image at a diagonal over top of it. If both of my eyes are uncovered, I see at least two of everything. Sometimes this can be really weird / gross. There was a nurse in the hospital who, at one point, seemed to have a double wide mouth/mask, with four eyes lined up on top of it. At other times, I would see things vertically. There would be two eyes and a nose with two eyes and a nose underneath and two mouths under those. And when the person spoke everything would move at once. It reminded me a lot of Lewis Carroll's Through the Looking Glass. Everything seemed ridiculous and unnatural. And, of course, nauseating. Everything I saw was dark, and spinny. I had vertigo, even when laying still. No one around me seemed to take the double vision seriously. But I felt as though my life had been inherently changed and may never be the same again. No one could tell me why I had it, or what might fix it. Maybe it would get better on its own, maybe I would need to do therapy, maybe it would never get better. 

    Someone in the hospital procured a couple of glasses shields. They taped over a different eye on each of them, so that I could rotate. With one eye essentially blocked, the double vision became single, but it was still so intensely blurry that I could not read anything. After the hospital my husband got me patches that went on my glasses. Ironically it became apparent after a couple of weeks that I was allergic to them (possibly a latex allergy?) and we had to upgrade to silk ones. It didn't just affect my vision, the vertigo that it caused felt like it was squeezing my brain. There was a heavy weight pressing down on my head, and it exhausted me.

The week after my surgery my family headed north for my Grandpa's graveside service and several friends took turns watching over me. One of these was my sweet friend, Cheryl. When I shared with her that my biggest challenge and frustration at the moment was my double vision, she let me know that she had had double vision for 10 years! I couldn't believe it! She is the most amazing cookie artist I've ever seen. Her work is intricate and detailed. I can barely pick up the food off my plate and get it into my mouth! She even drove over to my house and brought me food. How could this be? Her advice to me? She said that things got a lot better for her when she stopped trying to fight it. When she accepted the double vision, she was much more able to learn to get along with it. In the moment, I was not ready to hear that. I was still convinced that I was going to be better tomorrow. Each day, I hoped I would wake up and open my eyes and everything would be back to normal. As time wore on, her wisdom began to make a lot more sense.

In the months after my first brain surgery the situation definitely improved. I believe a great deal of my symptoms where due in part to the hydrocephalus that was putting extreme pressure on my brain. That added to the darkness, the Vertigo, and certainly the squeezing feeling. Once that was resolved, as will be described in a future post, I was down to just the visual frustrations. For that I was promised the magic of a neuro ophthalmologist. The first appointment I could get with her was in Mid-May, but I was desperately disappointed when I was trapped in the ICU as my appointment date approached and I was informed that we would have to reschedule. The appointment got pushed out to June and I took another deep inhale so I could keep holding my breath until then. It wasn't as if I didn't have enough stuff going on, but for some reason, for me, this issue took top priority.

Finally, my appointment date was here, and I was able to see the doctor! Unfortunately, the doctor did not turn out to be the wonderful Wizard of Oz, nor was she my fairy godmother with a magical wand. I had at least hoped that she would give me some vision therapy exercises, something to do so that I could work on making things better, but the verdict was, “Let's just see if it gets better on its own.” After much begging and cajoling, she did concede to give me a new prescription which was very different from what I had been using. Unfortunately, I had not yet learned the value of advocating for myself as a patient and the values for the left eye were off. When the technician was going through the lenses asking me 1 or 2, 3 or 4, I let them rush me through instead of slowing them down and really getting the clarity I needed. But, this was a good lesson learned.

    I returned to the neuro ophthalmologist in September and December with only mild improvement. To a fair degree, I am getting used to the way the world looks now. It's easier without the pressure and vertigo of hydrocephalus. Things that are at a distance are more blurry than doubled, it's close up things, like reading text, that give me the most trouble. The doctor has determined that the source of my vision doubling is torsion in my right eye, which means that my right pupil is slightly higher than my left pupil and my brain is not able to accommodate for their difference. I go back to see her next week where we will determine whether or not surgery is warranted. Not gonna lie, that is scary. I really would like my vision to be fixed, that is for sure! But I have a great fear of surgery making it worse. I have barely doubled vision at this point. Sure, I bump into walls and I trip over things. I can't tell whether it's a crack in the cement or an actual curb. But I can see. What if she gets in there and yanks around on my eye muscles as she put it, and I come out not being able to see at all. That would be truly awful.

Here's the thing: Sometimes the blessing of opportunity comes with the burden of decision. If I lived in a different place or a different time I would never even be making a decision about whether or not to have surgery on my eyes. If I didn't have the amazing insurance I have or the supportive family that I have it wouldn't be an option. If I didn't live near a big city with advanced medicine I wouldn't even know it existed. But I am, and I do. God, please grant me wisdom.

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