My First Chiari Surgery Anniversary

On March 15, 2000, I went in for my first Chiari surgery with a local neurosurgeon. We'll leave aside what a big mistake it was not going with an expert and write about the experience as I saw it 12 years ago. First of all, I remember not having the luxury of being scared. My in-laws were staying with Melissa to help her through the experience and my parents were also involved. With all that fear and concern around me, I had to play it very cool and nonchalant. That catch phrase for the experience was, "I'm ready to go home now."

The most annoying part of the whole process was the fact that I was forbidden water after midnight the night before the surgery. They tell you this for good reason and I would have griped a lot less if someone had bothered to explain it to me. When you go under general anesthesia, your autonomic functions cease. You cannot breathe on your own but they intubate you to deal with that. More dangerously, your esophagus also ceases to function. If you have food or water in your system, there is a chance that it will reflux back up into your throat and then interfere with the intubation. You can die from this complication so it's better to be thirsty even when going through that dry mouth you can get from panic. I like to buck the rules but this is one to follow.

I had the first surgery slot of the day at 8am but that's a good thing. They tell everyone not to eat or drink after 8am because they will move people up to fill any unused OR time. So, you might think your surgery is at noon but it could end up being 8am with almost no notice. Mine was at 8am and I arrived in plenty of time. The first thing they made me do was change into one of those miserable hospital gowns. Part of me believes that the design of those gowns is meant to take away your dignity. Without your dignity, you're more likely to obey hospital rules no matter how stupid and pointless they are. In my case, I committed the unthinkable sin of leaving my underwear on because they help keep the Depends in place. One nurse started to raise hell about it until I reminded her that I was incontinent and that the hospital might want to pay attention to such details. She backed down and my underwear was removed while I was unconscious in the OR without further comment.

Don't worry. That wasn't really a major argument. The first real unpleasantness came when an IV nurse came to give me my arterial IV. The only warning was that it might hurt a bit. As a newlywed, I was still trying to be brave in front of my wife so she was shocked when I let out a loud yell. That was one of the single most painful things I've ever experienced. This set the tone for the next what seemed like a few hours. They took my watch away from me with the rest of my clothes so I was left to wait in a pre-op ward with no clock.

After that shocking pain of that shot, I was becoming unnerved. The creeping panic that led a six year old me to beg my father not to let them take me away was setting in. (Yes, I've given him a few scars, too.) Melissa stayed with me to the last minute when I assumed I was headed into the OR. It was the pre-op ward instead. The first good news was that they wheeled in two patients after me. Both of them were more scared than I was willing to show. I gained strength by helping talk them through it and yelling for a nurse when one of the women had been asking for help to use the bathroom for at least ten minutes with no result. Nurses had gone in and out with no response. After a pair helped her into the bathroom, I heard one of them muttering about me on the way out. "I see he's the group captain."

They had better believe it. I wasn't putting up with a single unnecessary discomfort in me or in anyone I could help. Eventually, I was by myself again until my anesthesiologist came in. He introduced himself and listened to me complain a bit before telling me that I needed another arterial IV. He assured me that he wasn't a sadist who would put one of those in without using a local first. Sadist was his word not mine. Evil IV nurse from 2000, you were a sadist! It went better with the comparatively slight pain of the local.

Eventually, I made it to the OR and was surrounded by people in masks. I have a real problem with people putting things over my face. It triggers a panic reaction and my panic was on a hair trigger at this point. Someone must have seen this because the mask went out of my sight and the OR people reintroduced myself. My first surgeon, his OR nurse and the anesthesiologist should have all been familiar but the masks plus whatever I already had in my system made things fuzzy. In any case, I was calm enough to let them put the mask on and they told me to count back from 100.

My greatest fear out of everything was that I would wake up paralyzed but able to feel pain during the surgery. My first surgeon noted that he's never seen more people scared by one "60 Minutes" piece. He promised that they had technology to prevent that now. I closed my eyes, counted 99 and then opened them to see Melissa in the recovery room. To me, no time had passed but others remarked that it had been something like six hours. With my beloved's face before me, I just had to say it. "I'm ready to go home now."

That's when the pain hit. A nurse appeared with a syringe and I asked her what was in it with the intent of refusing any unnecessary medication. She put the needle in my IV, pressed the plunger down, then said, "Morphine." I lost consciousness again and was transported to the ICU.

I am withholding the names of some people, others I've forgotten yet Patrick must be given his just due. I am a fat guy and I don't pretend otherwise. I had to be moved to avoid bed sores and to check the wound on the back of my head. Moving me required two women nurses or Patrick. When he moved me, it hurt a lot less. Wednesday night and Thursday disappeared into a fog of extreme pain and blurriness of morphine. Did I mention that I was lying on the back of my head where the surgical area went from the top of my head to down just between my shoulders? It hurt to the point where I was terrified before my second surgery but that's another story. As they started stepping down my morphine doses, I learned to meditate a little just to survive. If I did so, it felt as if the pain was in someone else's head.

On Friday, they moved me to a regular room and I discovered just how much stronger I was. When my first surgeon came to see me on rounds, I made sure I was already on my feet. Standing was the most difficult thing to do so I did that while he was still out of sight. Hospital life had already used up all of my patience. I essentially missed a dose of painkillers due to a nursing shift change, I had to eat bad tuna for lunch and I felt nothing wrong but pain and embarrassment. When I went to use the bathroom, a nurse insisted that I wait for her "help." I was much closer to the door than she was so it was locked before she arrived.

I had already suffered through a wheelchair ride over divided carpets that felt like riding over potholes in a car. I had dealt with the drawing of blood and other checks every two hours. It was all I could do not to bite someone. I had been handling my own medication since age 4 so having someone hand me a cup of pills and telling me to take them was too much. Tell me what each one does and why you expect me to take it. Several got returned because I disagreed with the need for them.

Thus, my first surgeon arrived and I put on a show for him to send me home that day. Melissa was livid because she had a crew of friends scheduled to help her move furniture the next day. She didn't want me there and trying to help. Thus, a three way negotiation took place resulting in a tenative return home date of Monday. It was actually the best I thought I could do so I agreed.

By around midnight, I was bored and miserable. I couldn't stay in that room. When I was in bed and on IV pain meds, it was easy to sleep or just drift. When I was able to get around, the old insomnia came back. The nurses made a deal with me. They told me in advance when they wanted me to be in my bed for medication and I obliged them. The rest of the time was spent exploring and getting my strength back including once being lost enough to be seconds away from having to show someone my wristband and accept an escort back. Luckily, I saw a familiar landmark in time.

Around midnight, I fell in love. Oh, it was a short lived and completely one-sided affair but I met my dream nurse. She caught me out of my bed reading a newspaper in the hall shortly after midnight. I couldn't evade her so I sat there for my scolding. Instead, she offered me a spot at the nurse's station where fellow insomniac patients were playing cards and drinking coffee. When it was time for my checkup, I was asleep but this beautiful nurse didn't have to wake me up all the way and she didn't.

I started hanging out with my insomniac crew and our leader (when she was working) over the weekend. That's when a strange and horrifying thought hit me. My needs were taken care of, I had friends to help me stay busy and the food wasn't that bad. I didn't mind hospital life all that much. It was something akin to Stockholm Syndrome where hostages had formed bonds with their captors. I was making the best of it. On the inside, I went into a rage. There was no way that I was staying prisoner in that place a day longer than necessary!

Monday arrived and they let me go. I don't even remember how the great battle over the wheelchair went. I do remember how painful the car ride was. This was pre-brace so I had no neck support and the pain was just ungodly. We got home and I went up to the apartment in delight. I had escaped before I had accepted the hospital as my place.

It saddened me that one woman from my crew was going to be there for months at a minimum. She was a nice elderly lady with a great sense of humor but she had a brain tumor or something similar. I believe she most likely died in there but she had truly adapted for good reason. I wish I remembered her name.