I'm in pain!!!!

I wake from the surgery SCREAMING in pain. I'm so groggy and not too sure what's going on. I also can't figure out why I'm in so much pain. They are rolling me through to NICU and I am sitting up in bed clenching my teeth as hard as I can and gripping the sides of the bed screaming, help me, I am in pain! It's all cloudy, but that's exactly what I remember. My family tells me that after 3 hours of surgery my mom receives a call from my neurosurgeon telling her that they have run into some complications. He explains that once he cut into my skull, the bone/tumor growth was MUCH larger than he could see on my scans and the bone was growing up into my brain area, which for me, explained the severe stabbing pains throughout my head. He also explained that my vitals kept dropping dangerously low and they were having an issue with that. He told my mom he would make a call to her every hour and let her know what's going on. Finally, after almost 8 hours, they had to take me out of surgery due to my vital signs dropping. While in the operating room, they had to take me off ALL pain meds to let my vitals rise, so this explains why I was in excruciating pain. When I realize more of what's going on, they tell me if I can muster down a couple dry crackers, they can administer some morphine through my IV. Oh, at this time, I also notice I am wearing 2 IV's. What did they do to me? I am more than willing to eat the crackers for the pain meds, although my mouth is so dry, they taste like chalk. Oh, in the midst of the drama during surgery, my surgeon scared my family so bad that my middle sister called my big sister, which lives 5 hours away in Texas, and told her that it wasn't looking too good, so she needed to get to the hospital. My big sis and her family drove like maniacs to get to me. When I found that out, I had to see her first! I felt so bad for everyone being so scared, while I had no clue what was going on. My family all came in to visit me, two-by-two, and they took some not-so-attractive pictures of my battle wounds. I couldn't see my head or face, so they were trying to show me what I looked like. This was right around Halloween so I decided to call myself FrankenKimmy, since I had the front of my head covered in staples. This wasn't exactly what I imagined. Actually, I don't know what I expected. My right eye looked like someone punched me. It was swollen shut and I couldn't see out of it. The morphine kicked in within seconds and I was feeling relief, but still in pain. I stayed in the NICU that night and the following day. It didn't help my head pain when the "neighbors" were visiting their grandma, laughing and cutting up with their light on, on their side of the room. I quickly let them know that I was not having a party on my side and I mustered up a SHUT UP! I almost felt bad, but then I thought to myself how rude they were being. Regardless, it worked. I'm sure I worked the nurses to no end. I called every 2 hours to let them know that I was in pain and needed some pills. I definitely didn't let the pills go any longer than what they allowed. The pain was too much. I had never felt such pain. I've been in 4 car accidents, passed 2 kidney stones, had a couple other minor surgeries, but never anything like this. I finally get moved to a private room and my neurosurgeon comes in. He looks relieved and happy that I'm alive. He explains the surgery, told me that he cut the bones away from my optic nerve and away from my bulging eye. He explained how he cut through my main jaw muscle to remove my skull bone in my right temporal region, and replaced it with titanium mesh. He then tells me that he had to stop right there, although he knows that there is still mass located in the area of my ear and jaw, but he couldn't go any further. He hoped what was left would die out. I'm on pain meds and not exactly comprehending everything he said. The titanium mesh and removing skull bone was still playing through my head, but then I hit the part about the mass still LEFT IN MY HEAD? WHAT????? I just had brain surgery and you didn't get it all out?

Surgery Day

I didn't sleep at all the night before the surgery. My sister, nephew and aunt were at my house, so I spent time with them, along with my mom. After everyone went to bed, I went to my bedroom, and as funny as it sounds, I talked to my dog for awhile. I cried harder than I ever have. I wasn't scared for myself, I was scared mainly for my mom, dog and family. The next morning on 10-26-10 we arrived at the hospital and waited maybe an hour before they took me back. My mom and sister went back with me. The first thing the nurse made me do was remove the fresh polish on my toes. You're kidding me? What will they be doing to my toes? Maybe it was a distraction for what was to come. The nurse asked me if I was queasy of needles or passed out easily. Me? No way. She obviously hadn't seen my entire back of tattoos, amongst others. She starts to draw blood and misses the vein, so she digs a couple more times with the needle. I show her my good vein. She ignores it and leaves the needle in, only to return to tell me that she didn't draw enough blood. She then does a butterfly IV on my hand. Hello, here is my good vein! She digs around more and the room suddenly goes black. Yep, enough is enough. I'm running on no sleep, I'm stressed and this bitch is killing every vein I have. They tell me it's time for my CT scans before surgery, so I hug my mom, sister and nephew, which was now back in the pre-op room with me. They roll me in for the scans. The nurse looks at the first IV and tells me that it's blown. Ya don't say? I knew that! That explains why it's swollen, red and itching! I show her my good vein. She hits it the first time and starts administering the contrast. After a couple scans, I'm rolled out into the hall where my family was waiting. They let me stop so my family can come over and hug me. The one thing that sticks in my head is my nephew hugging me and looking right at me to tell me he loves me. I will never forget that moment. We were all crying, not knowing my fate. In the operating room, I'm being asked a million questions by every nurse, doctor and intern. What's your name? What kind of surgery are you having? What is Fibrous Dysplasia? How did you find out you have it? What is your date of birth? Have you ever had an allergic reaction to anesthesia? Yes, I have. Okay, we will keep an eye on that then. Kim, just close your eyes and relax. Think of your favorite things. A serene place you'd like to be. I was thinking, God, you've taken me this far. Carry me on through. The mans voice said, you will be asleep in no.......I guess I was knocked out. If only I knew what was to come.

The Countdown

I went home and marked the surgery date on my calendar, and I started the countdown. 12 days until surgery. I wrote on each day 12, 11, 10, and so on. I tried not to think about it, but I also tried to be as realistic as possible. The first thing I did was tell my mom something that I found to be very important. I told her that if I was to die, don't ever be sad that I died at a young age because I have lived a full and happy life up to this point. I told her that I have done more in my short time on earth than most people I know. The only 2 things I missed out on was having children and traveling. If those are the ONLY 2 things I miss out on....I can definitely be happy about that! I know she was sad to have this talk with me, but it's reality. At my pre-op, the first question I asked was about my hair. How much hair are they going to shave off and where exactly? I explained that I work in the public eye and if I look like a circus freak, it will affect me personally along with my job. My surgeon explained that he would shave the smallest line possible from past the left middle of my head over to the front of my right ear. He promised me I would be able to hide it as long as I styled my hair the same. He explained that they would take a tool similar to a dremel and shave all of the over-grown bones back down to their normal size and shape. I was told that my right eye would swell closed where I couldn't see. He pretty much walked me through the "virtual" surgery. If only it were that simple.

At least it's not a tumor.....

All along I kept telling myself, at least it's not a tumor. The new ENT called me into his office and asked me to have a seat with him in front of his computer. There it was, my CT scan on the screen. Why did it look funny? Why was one side a lot more white in color compared to the other? He had a grim look on his face and as he pointed to the large white areas. See this, it's your bones. See how this is a lot larger than the other side? This is a rare bone disease called Fibrous Dysplasia. I was in shock, but I thought, at least it's not a tumor. He referred me to a Neurosurgeon who could help me. All I could think about was having my head cut into. I cried. My mom cried. I was thinking how relieved I am that my dad died 5 years ago at that time, because he would be pacing the floor and freaking out. He wouldn't have been able to deal with this disease in a calm manner. Mom and I go home and look up Fibrous Dysplasia. In a nutshell, there is no known cause and no known cure other than removal of the mass. Wow. I scrolled through picture after picture of people that looked like the Elephant Man, or worse. I even ran across one of a little girl from another country that obviously had no health care, because she looked like a hippo. I kid you not, her nose was as large as and favored a hippo. I was devastated. I had to wait another month to see the Neurosurgeon, only to have him come into the room, confirm the fact that I had Fibrous Dysplasia, and then tell me that it's way too involved for him to do surgery. He referred me to another Neurosurgeon. At least it's not a tumor, I thought. This new guy is the Director of Skull Base Research/Neurosurgeon here at LSU Shreveport. On 10/14/10, I anxiously waited with my mom for 3 hours, wondering if I was going to have any resolution this time. We pondered what he might say. Finally, he comes in, does a thorough visual and neurological exam. He talks to me about my symptoms, excessive watering of my right eye, vision loss, dark spots, flashes of light that look like lightning bugs flying past, but nothing is really there. I tell him about my ear and the constant popping sounds along with static when I talk or when someone talks to me. I tell him about the PAIN. I can only describe it as a sharp, stabbing pain in my brain that is nothing like a migraine, but 100 times worse. He leaves the room, comes back 10 minutes later and asks, how is the 26th? Mom and I look at each other. I say, for what? He says, for surgery. You need surgery now or you are going to go blind and deaf because this mass is pressing against your optic nerve and ear canal. Um, ok. Surgery is the 26th. We can do that. Now what? It could be worse.....at least it's not a tumor.

Uncertain

So, I'm new to blogging, but everyone has so many questions lately about my "illness" that I thought it would be more convenient to blog about it.

Starting from day one, at the beginning of 2010, I started waking up, noticing how tired I looked. I chalked it up to working hard and being exhausted. One night at work, a co-worker told me that I looked tired. I took it to heart because lately I really did look tired and just wasn't feeling like myself. To be honest, I was exhausted. Even after sleeping 8-10 hours a night, I would get up and immediately feel like I needed more sleep. I would lay back down on the couch and sleep all day. This was unlike me. I had no drive to do anything. I had previously been redecorating/remodeling my house, but that was all put off when I couldn't stay awake long enough to walk from one room to another. One morning I woke up and noticed how puffy my right eye looked, along with swelling in my right temple area. It felt as though I had a sinus infection, along with an ear ache. It was like this swelling came about overnight. I ignored it. I took sinus meds, but within a month or so, my eye started bulging out and my temple became even more swollen. I figured I also had an ear ache. On 6/14/2010, I finally had no choice but to go to my doctor. She suspected a severe sinus infection and treated it as such. I was sent home with a few prescriptions and some antibiotics. Two weeks later, I felt the same and still had the same swelling. We then did x-rays of my sinuses. A few weeks later we did blood work. Nothing. My doctor referred me to an ENT. On 8/10/2010 the ENT stated that I had a sinus infection and put me on even stronger antibiotics for 2 weeks. Nothing. He finally ordered a CT scan of my sinuses on 8/24/2010. Since the diagnoses said, sinusitis, the radiologist only looked at my sinuses and reported that they were clear. He never zoomed in on the rest of my head or checked to see what was going on in my temple area where I had the swelling. The ENT calls me and says that there's nothing else wrong, so  let's try some Singulair and new nasal spray. I asked him about the swelling and he said he didn't see any swelling. You're kidding? I am starting to look like the Elephant Woman and you don't see any swelling? I took the new meds for a week and KNEW something was wrong. I felt it was more than sinus. I took it upon myself to get a copy of my CT scan and made an appointment with another ENT for a second opinion. This was the day that changed my life forever.