Going Blind Having Faith

Into Surgery

I'm going blind and keeping the christian faith. That was something that I had already decided to do. Because if my christian faith just sits and does nothing like faith the noun, then faith the verb is not put into motion. That would make me out to to be a hypocrite. Someone who takes in all the goodness of my christian faith, but idly sits when called upon.

I had seriously considered the thought of going blind and knew the chances of going blind were there. I had been informed. Part of me believed that just as long as I trusted God and that people were praying for me that it would all turn out perfect. No chance for that- I was going blind.

Going into surgery was a fairly simple routine. Most of you know the very basic drill.

"Put this on."

"I'm just going to check your vitals."

"The doctor will be in shortly."

And the you sit and wait on the doc in a brightly lit room that is so cold that it might as well be a refrigerator. If nerves really aren't enough to get you ripe for surgery, the cold has to be added to make the situation just right for the process. At least your blood will be so thick that you definitely won't lose much.

Then I remembered laying back, getting a shot in my arm and an IV drip. Almost lights out. I barely remember being in the OR room which was a much colder place. I felt something going down my throat as I was woken up and was asked to swallow. That hurts I thought...lights out.

Post Surgery Going Blind

I really don't know where I was exactly when I heard voices. Those indistinguishable voices that become louder as you began to wake up from a procedure.

"Can you hear me?"

I could hear her. I opened my eyes. Where was she? Still not seeing anything but a small gray shadow partly over me.

"I can't see..."

I heard nothing.

"I can't see." I said. I thought, "I'm going blind!"

She replied, "It's just from the drops that we put in your eyes."

"No." I said. "I can't see."

Being quickly rolled away, it was lights out again as I passed out from the anesthesia.

Some time later as I eventually awoke in recovery, I heard voices all around me. Dizzy, I opened my eyes, tried to focus, but could only see faint light and colored shadows. Frightened out of my mind I again thought, "I'm going blind!"

As I lied there in my bed, feeling completely out of it, and not knowing what to say or do, and at the semi-conscious thought of going blind I felt fear coming over me as I began to quickly come to my senses.

I desperately called to my wife Edie.

"Edie?" I exclaimed.

"I'm right here." She assured me as I became aware that she had already taken hold of my hand.

"You did really great," She said.

One of the problems with crying after having brain surgery through your nose is that you can get really clogged up. This is the making for a terrible situation. I already had contraptions all over my mouth and nose assisting in the recovery process. I didn't need tears and a stopped up nose complicating the whole recovery process.

I fought back tears. Tears from both the comfort of knowing that Edie was by my side, as well as those that come when tragedy knocks.

"I have notified Dr. Fukushima about your eyesight and he will be here in just a minute" the nurse said.

As the nurses continued to try to evaluate me, I continued to try to describe to them how it is that I see. Combined with my being half sedated and the fact that I had no experience in putting together anything descriptive enough about this type of eyesight that it didn't even come close to explaining anything.

Edie, and one of my family's dearest friends, CeCe, were there by my side. Both of my hands were being held as they prayed over me.

Waking when the sound of Dr. Fukushima came in the room startled me. He quickly began to evaluate me and check on the surgery site and discussed with me the importance of keeping my head back and not looking down. And that looking down would cause the spinal fluid to leak out of my head. If that happened, it could cause serious complications.

At the site of my head where Dr. Fukushima drilled through, there was no bone left remaining. So he performed a procedure that removed fat from my abdomen packed it over the inside of the hole that was drilled. This would then eventually grow onto the bone to cover the site of entry preventing spinal fluid leaks. Any problem with leakage could cause the packing to shift and would require an additional surgery.

Dr. Fukushima then came over to me and started checking out my eyes. Even though my eyes were fine, it was something that had happened during the surgery that he was concerned about. I could hear him as he stood at the foot of the bed asking me, "can you see me now?"

"No." I would then say. Repeatedly I responded with a "no" until I eventually saw a small shadow moving into my field of vision. Even though I couldn't make out what it was, I could see a haze of movement.

Dr. Fukushima, from what I gathered, was very distraught. He felt as though he had failed. He was never one to take his profession lightly. His reputation surpassed him. In his office he has wall to wall awards of recognition for the successes that he has had.

After consulting with Edie at length, he came to my side and said. "We will have to watch your vision to see how it goes. If it gets any worse we may need to do a second surgery. I am concerned there is too much pressure on your optic tract, which is causing your loss of vision." "

He then said, "I will continue to check in on you and have my nurses check on you throughout the day." "Hopefully your vision improves and doesn't get any worse."

The strangest thing that I remember seeing was thousands of floaters in my vision. Although there was nothing really there, it seemed that these floaters that I was seeing were like very small electrical components with shapes that I cannot describe. And they were moving across very quickly. So quickly in fact that it reminded me of a science fiction movie that shows stars moving by as acceleration takes place up to the speed of light. Whether I closed my eyes or not they remained. Sleep, I just need sleep.

One of the benefits that I had to alleviate the pain in my head was a morphine dispenser. All I had to do was push a button once, twice, or up to three times per hour depending on my pain tolerance, and I was off in La La land.

Emergency Surgery

I was wakened many times throughout the day with vision checks and check ups on the surgery site.  It became evident that hope for any improvement in my vision was lost when they could easily tell that my vision was deteriorating. Finally at 4:00 a.m. the next morning, the nurse had come in for one final check before shift changes. My vision had deteriorated. I couldn't see much of anything.

"I need to call Dr. Fukushima and let him know. I'll be back.

A few minutes later, the nurse returned and said, "Dr. Fukushima will be here in 10 minutes. He's going to bring you back into surgery. He thinks there is too much swelling going on in your brain."

My heart sank. Fear began to take control. My first thought was to pray. If there was some way for me to wake-up all that had been praying, to be praying for me during the next surgery. "10 Minutes."

"I need you to call me wife."

Nurse- "Okay I'll call her and let her know." "I'll be right back." Her footsteps down the hall trickled off.

Nurse- "I tried calling her and another number that you gave us. There was no answer." "We need to go ahead move you out of here and get you prepped for surgery."

"No!" I said. "I'm not going anywhere until I know that people are praying for me." I protested.

Think, think!

I had trouble remembering CeCe's phone number.

Trying to think straight with a hole in my head, being high on a morphine drip, my inability to see anything, and needing to find my phone was ridiculous.

"Find my phone and you will see her number and call her." I said.

Shortly after, he returned. "Okay, they finally answered and they are on their way here."

Relieved. They were only across the street at a hotel. It would take them 10 minutes to get here.

Feeling better and knowing my wife, she would have contacted people right away to let them know how they could be praying for me. She also had access to CaringBridge people registered to receive updates on my status. That would be updated soon as well.

As soon as Dr. Fukushima arrived it was obvious. He could be heard coming down the hallway toward my recovery room. He came and did a vision check. I couldn't see anything.

"Okay. Lets get him in the OR." He said.

Quickly I heard bodies around me getting things together and getting ready to roll me out of the room.

One of the best things about technology is that it has a great way of making things more efficient. Or perhaps, that is true in most cases. The bed that I was lying on was supposedly a remote control bed that could be operated from a controller and driven up and down the halls. Costs up to $40,000. The hospital that I was staying at was Duke Raleigh. They spared no cost and just bought many of these.

can we have the surgery now?

Just when they needed the bed to work it didn't. And Dr. Fukushima didn't wait.

He said "Lets push it into the OR."

The bed that I was lying on probably weighed more that 500 lbs..

"Push! Push!

Dr Fukushima shouted. He wanted to get me in OR quickly as he thought that things were pretty grave for me.

"Push!" -crash.

I felt the bed bang on to a corner of a wall. Too heavy to stop.

Finally in the hall.

"Push!" Push!" The little Japanese man was impatient.

Then again a sudden, "Crash!"

Another wall perhaps? We were flying down the hall as I heard more footsteps coming to assist and then something to the sound of boxes being knocked over. "All this special attention for me?" I thought.

We finally were arriving after banging another wall rounding the last turn into the ice cold refridgeratOR.

I felt the bed come to a stop. Footsteps walked away and then silence.

Where did everyone go. Weird. I was out of it, lying flat on a bed, couldn't see a thing, and had no clue what was happening. Close by I heard a conversation.

"But how are we going to have a surgery when we are not prepared for this?"

Next person, "I don't know but Dr. Fukushima says to do the best with what we have."

There was more bantering that seemed to go on and on. "Stop your Nitpicking" as my Dad would say to the children in a fight.

I finally had to engage and said, "At what point are we going to have a surgery here?"

Silence. I guessed that perhaps they forgot there was a patient in the room? memoirs of an Operating Room?

I don't remember much after that except for being woken up again, with, "Charlie, Charlie!" "Can you swallow for me?" "I just need you to swallow." That tube in my throat. Again. "Ouch!" I was out.

Whenever I had finally woke up in ICU I thought I was dead. I couldn't remember where I was. I felt excruciating pain in my head and my face. My mouth felt as though it had dehydrated and was left out on the sun to bake. My throat felt like fire.

My thoughts immediately became focused about going blind. I opened my eyes to the sound of Edie's voice. I couldn't see her. I had heard her voice. What are all of these things flying around. It was the same as before. Terrible things flying around. Blurry super bright light...

"Dr. Fukushima is coming in." I heard someone say.

I can't remember every detail, but what I do remember was that Dr. Fukushima seemed as though he failed.I heard it in his voice. I could sense a dissatisfied physician. Clearly one that was not used to failure.

I was alive. I was happy. And to me he was no failure at all. My vision, I was sure would get better. I hoped.

"Mr. Thibodeaux" Dr. Fukushima said.

"We are going to do some tests on your vision. Now remember that no matter what you do, do not lean your head forward. You are still not able to do lean forward or look down for fear of a spinal fluid leak."

"Now I want you to look at me and tell me what you see" he said.

As hard as it was for me to put it into words I couldn't. How do you describe what you have never experienced before? I didn't even understand what it was that I saw. The thousands of particles flying by in my eyesight were distracting and distorted and prevented me from making any sense out of what I saw. The objects that I saw in the room were more than what I saw before, clearly I could see better. But as I tried to focus on something, things were not all there.

"I want you to look straight ahead and tell me how many fingers I am holding up." Dr. Fukushima said.

As he waited in the silence for my response there was none. Again he said,

"Just tell me how many that you see."

"I don't see any fingers."

"Okay." Now tell me how many that you see." He said.

"I see three." I said.

Apparently I got that right. Better than a broken bed perhaps?

He was almost onto something, I thought.

"Okay now I want you to look straight ahead and tell me when you see my finger."

I waited for a couple of seconds and suddenly a hand and a finger appeared from my right side out of nowhere like a magic trick.

"Now." I exclaimed.

"Now one more time." he said.

I again waited and suddenly the same hand and finger immediately appeared in my field of vision from my right.

"Now!" I said.

"Now this time I want to do it from the other direction." Said Dr. Fukushima.

"Just tell me as soon as you see my finger."

Almost immediately I saw his hand and finger in my peripheral vision while looking straight ahead.

"Now." I said.

We went though many more visual tests over the course of about what seemed to be 5 minutes more.

"Charlie?" He said with a big pause, deep breath, and a long sigh.

"It appears."  Another long pause. "It appears that you have lost your peripheral vision on your  right side with both eyes."

"I want to test each eye individually the same way to be sure of it." He said.

I didn't understand. He tried more to explain by demonstration.

So we went through the same slow process as before  but much more slow;y as he explained it all to me. We had the same results with each eye.

"Unfortunately, the condition that you have is a type of blindness called Bitemporal Hemianopsia." He said.

"Going blind is something that happened due to damage to the optic tract, most likely due to the swelling that occurred in your brain after the surgery. What I did when we went back in for the second surgery, was remove some of the packing to alleviate some of the swelling that was putting too much pressure on the nerve."

I gave him a blank stare as I was taking it all in.

"Whether or not your visual field will return remains to be seen. It could take days, weeks, or months. Your peripheral vision may not return. But if it does return it would have to do so within the first two years. After that most likely your vision will not return.

Going blind was a frightful experience. I was grateful to have some of my vision return. We all hoped and prayed that all of my vision would return soon.


Going Blind With Henianopsia Makes Life Extremely Difficult To Manage In A Changing Environment

To be continued: