The day of my first surgery . . .

I have been hesitant to tell you the story of the day I had brain surgery. . . it is a day I will never forget, but would if I could. This isn't the average surgery, its BRAIN surgery! Mine became complicated by a one in a million arterial anomaly, and quickly turned into a nine hour surgery instead of a six hour surgery. If you're a fellow zipperhead you probably have similar memories that haunt you occasionally, if you are a chiari patient pre-surgery you may not want to read this post, and if you have a "normal" brain you may find this story useless - I guess I don't really know what people will think.

Nov 17, 2004

5:00 am: It is cold and dark outside our run down, Long Island motel. I stood in the shower staring at the cobalt blue tiles covering the walls, the hot water filling the room with steam. I ran my hand down the back of my neck - it is still whole and unchanged by a surgeon's scalpel. After a long time, I left my steamy cocoon and came out into a shabby motel room where my husband and mother are waiting. I sit down on the bed and when I see myself in the mirror, for a moment, it is like looking at someone else. The mirror covered walls make it easy to see what they are doing behind me as I sit wishing time would just stop - I do not want to do this.

5:45am: We leave the security of our little motel room, and walk out into the crisp, winter air to climb in the cab. I am even more nauseous than normal, but I just keep moving.

6:00am: Caleb and I arrive in the pre-surgery registration/waiting room - this is a tiny room considering the number of surgeries performed in this huge hospital each day. We sit together, waiting for the nurse to call my name so I can change into my hospital gown and socks. Once I'm changed, and all my information is double checked, the nurse lets Caleb sit with me until my ride comes. It isn't long before Dr. Remy, one of my surgeons assistants, walks in to tell me he's ready. As we walk to the gurney I get a huge wave of fear and begin telling them, "I've changed my mind, I just want to go home . . . please don't make me do this!" Poor Caleb, he has no choice but to kiss me, tell me he loves me, and help me on the gurney. As Dr. Remy wheels me away I'm overwhelmed and begin to cry, he said, "If you weren't scared I'd be concerned - this is normal and I promise we will take very good care of you."

7:00am: I am in the operating room, doctors are attaching electrodes, someone is placing IVs in three locations, and thankfully, a nurse gives me a shot that finally makes me feel at ease. A few minutes later my anesthesiologist asks, "What music would you like to hear as you take a nap?" First, I ask for anything with Jerry Garcia, which he does not have, and my second choice is Frank Sinatra and this he has. I hear a little bit of Come Fly With Me and then I drift off to a warm, deep sleep.

At this point, I am obviously unaware of anything so, this part of the story is based on what I have been told since this day. . . After kissing me, telling me he loves me and that everything would be okay, my husband walks down the hall to the tiny, overheated room marked Surgery Waiting Room. My mother is there waiting, along with a room full of other patient's concerned family members. The surgery is supposed to take six hours, so might as well get comfortable. From what I've been told, it is overcrowded, hot, and there is one very loud family sobbing over their relative having an appendectomy. At some point they would go to eat, stretch their legs, but ultimately they would wait for nine hours to see one of my surgeons. Evidently I have a "one in a million" arterial anomaly running right through the path tmy surgeons were going to cut into my brain. Thankfully, with the use of doplar technology (which no other surgeons in the world use) they saw this anomaly, found another way to my brain malformation and literally saved my life. This is one of the rare fatal complications that are seen in this particular brain surgery.

4:00pm: At this point one of my surgeons, Dr. Paolo Bolognese, comes out to speak to my husband and mother about my surgery and complication. He tells them I am doing well, and my primary surgeon, Dr. Thomas Milhorat, will be out to speak with them as soon as he finishes closing me up. Dr. Milhorat will show them a sketch of my anomaly, tell them the surgery went as well as could be expected with a complication of that sort, and they could see me soon.

Some time that afternoon/evening: Everything is very foggy, it is hard to focus, I can hear voices, and feel severe pain. "Jennifer, you're in the recovery room. You're okay, just relax." I slip back into a hazy sleep, and pain retreats momentarily. Slowly, I become more aware of my surroundings, pain, and body. . . I can hear two, unfamiliar voices directly next to my bed, they are talking about my vitals and one of them says they are going watch me for a while. I can feel someone watching me, but when I open my eyes I cannot see her. I can see the white tile ceiling of the recovery unit, I see the tops of the curtains on each side of me, and then, my nurse's face. "Hello, how are you? How is your pain?"
Oh shit, I am in more pain than I have ever felt in my life! Damn, why did I do this? I can't focus from the pain, the sleepiness, and there is no way I can speak. "ahhh. ouhhh." My nurse responded by saying, "Do you need something for the pain? You can have something for muscle spams soon too." All I can get out was, "yes." She then shoots something into my IV, my insides get a flash of warm, and I relax a little.
Next time I wake up, I realize I'm laying on my back, and I really want to move. My head is being propped up by a metal, v-shaped wedge lined with foam, but it feels like my brain is trying to rip through the back of my skull. So, I tried to roll on my left side - this did not go well at all. The nurse standing at the foot of my bed watching me quickly stopped me and insisted on rolling me herself. As she rolls me the my left, I puke up the fluid in my stomach, feel extreme pain run through my head, and my neck spasms all at once. She gets me situated on my left side, with my knees slightly bent, and uncomfortable pump cuffs on my lower legs to prevent blood clots. Now, I can see the three or four beds between me and the unit door, I see the nurse updating my chart then observing me from the end of my bed, and I continue to drift in and out of consciousness.
Finally, I hear two familiar voices - my husband and my mom, the two people I wanted to see more than anyone in the world. As I open my eyes, I see Caleb's face . . . he looks tired, but relieved. All I can manage to say is, "it hurts, it hurts, it really hurts." He takes my hand in his, holds it tightly and says, "Dr. Milhorat said it went better than could be expected, and they could see your spinal fluid flowing again with the naked eye. You did it! It went well. I love you. We only have ten minutes now, but we'll be back at visiting hours." A minute later, he lets my mom up close to hold my hand. She kisses me gently, strokes my hand with hers, and tells me, "You're going to be okay. The surgery went well, and you're doing well. I love you, punkin." My mom very gently, strokes the little strip of hair the doctors left along my forehead, and kisses the back of my hand. Then, it is time for them to go until visiting hours in a little later. With help from the nurse, and a break to puke, I turn to my right side, push the button she gives me for my pain pump and fall back into a haze of pain and meds.
The rest of the night goes this way - in and out of consciousness, trying to communicate, and pushing my pain pump button as much as possible. At some point I noticed the recovery room- it was one big rectangular shaped room, patients lining the walls, and a long nurse's station running down the middle. There are so many patients in this room, I can't see everyone so I can't tell you how many. Some patients are sitting up talking, obviously here for an outpatient procedure, and some are moaning and unable to move, like me. About midnight I am moved to a room on the neurological floor, my vitals are checked again, and I am left alone in my dark, quiet room.

Well, that is the story of how I spent my son's second birthday. For some reason I thought that day would be hazy, or at least fade over time, but the memories from that day are quite vivid. Honestly, I've always been happy I wasn't the one in the waiting room.