Tuesday, January 11, 2011
The headaches began near the end of October of 2010. They were mild at first, but began to worsen over time and I was finding that Advil, Excedrin or Motrin was unabale to completely take away my discomfort. I did think it was odd, especially since I normally don't have headaches, but I chose not to give it much thought at first. I found nursing a diet coke for most of my day would be the only thing that would help. Soon, I began to become concerned that perhaps my body might be addicted to the caffine and I stopped drinking diet coke completely. Thats when I began to grow increasingly concerned that I may need to see a doctor about my headaches. They were geting worse.
It was Thursday, DEcember 2nd. I woke up feeling pretty good and decided to do my early morning P90X workout. I felt a little sluggish, but continued through. I went through my early morning routine. It can be a little hectic here in the Naylor household in the early am with two young boys to get out the door by 7:30. I was on my way to work and felt nausea coming on very quickly. Twenty minutes later, when I srrived at work, I knew I was not in good shape. My peripheral vision was snowy and I was having one of the worst headches yet. Matt met me at work and I called my boss to let him know I needed to take the day. I am not one to take off work and to take off for a "bad headache" was very frustrating. I could only imagine what my boss was thinking as well when I said I had a bad headache and needed to see the doctor.
I was in no condition to drive. Matt drove me immediately to my doctor. Meanwhile, I was in agonizing pain. Standing in the waiting area at my doctors checkin-in window, I get sick beacuse the pain in my head is so great. I am scared. I thought it was perhaps a horrible migraine - but why now? why were they appearing now?
I saw my Dococtor and he told me that I was probbily suffering from migraines. BUT< I should follow up with an MRI the next day. I recieved a shot of demerol for pain. I was sick again. My doctor told me that he would have to admit me to the ER if I was not able to stop being sick. I asked for him to let me go home, get sleep.
I wet home, but was unable to sleep. I was getting sick every 30-45 minutes. Unable to eat. Matt drove me to the ER by 3 pm. By 8 pm I was admitted. I was given an IV, pain meds, and anti-nauseal meds. I had a CT scan.
What was found was our worst fear. A mass in my midbrain. BAout the size of a lemon. It was very large. It was blocking the flow of cerebral spinal fluid (CSF) and it was causing hydrocephalus, which was causin gmy severe headaches. I then had an MRI. Good news. The mass was calcified - as hard as a rock - literally. It was explained to me by my neorosurgeon - Dr. Brian Sullivan that it had probbaly been there for decades. For some reason, it had shifted and started to block the flow of my CSF. Calcified was good news - it was benign. Not malignant.
At this point, the first thing that needed to be done was get the excess CSF drained. I was scheduled for surgery the very next morning at 10:30 for a ventricolostomy tube to be put in to help drain off excess CSF from my brain. As soon as that was done - I started feeling "normal" again. BUT, becasue I had a tube thta was directly linked to my brain, it introduced a new concern - INFECTION. So, I was placed on the ICU floor.
During that weekend, Dr. Sullivan was in discussions with one of the top neurosurgeons at Johns Hopkins to see if I was more appropriate to have surgery there. There is a technique that is intra nasal and less invasive than a craniotomy. After numerous discussions with him, Dr. Sullivan met with me bedside, my husband, and mother - (who flew in from San Diego to be with me on that Saturday) that Monday morning. It was decided that based on the size of the tumor and the location, it was best to do an open craniotomy, to go between the two cerebral hemishpheres and corpus collosum and take the tumor out microscopically. I was SOO scared. I layed in the bed and my whole body shook from head to toe. I stood the chance of dying, of stroking out on the table. I stood the chance of waking up and not being the same person I was before. The chances were only 12% - but nonetheless, the chance was there that I did not want to have to face at all.
Dr. Sullivan told us that he felt confident that he would be able to perform this surgery. Dr. Dix would be the other neuro surgeon on the team - as thi s was a complicated surgery and they felt more confident having two of them in the operating room versus one. If he was not confident in his ability he would have sent me to Johns Hopkins. But in the end, they all agreeed that an open craniotomy was the only way to perform this surgery. My mom, Matt and I discussed our options and agreed to Dr. Sullivan performing the surgery by Monday afternoon. Surgery was set for Wednesday afternnon. It was expected that it would take 3-4 hours. Relatively short for brain surgery terms.
Wenesday came a lot slower than I wanted. My time was consumed by family and friends constantly at my side, which I was so grateful for. I also was finding that each day spent in bed was making me weaker and weaker.
The ICU nurses were so awesome - they allowed Ethan and Shawn to come see me the night before surgery. Normally there is a rule that no kids under the age of 12 are allowed on the ICU. So I could hold them. See them. That was so very hard - them not knowing what was happening and me not knowing the outcome of surgery.
Wednesday was here - I was prepped for surgery. I said all my goodbyes to my family and friends. I was given some meds to help me relax and make me a little sleepy. I was taken the the OR a few minutes later and I dont remember much else.
Surgery lasted 9 hours. It was MUCH longer than first anticipated. The tumor was harder than they thought and they took extra care to not damage the good brain tissue around it. Dr. Sullivan nad Dr. Dix also took great care to not not disturb the basal ganglia - which controls all volitional motor control.
I was told by Dr. Sullivan that I would be aware enough to have a few words with him after surgery but I would not remember them. I do remember being asked what the names of my boys were and saying Ethan and Shawn and the name of my boyfriend and saying Matt. How I remember - I do not know. It was late - surgery began just after 4 pm. I felt whoosy and grogy for days after surgery from the anesthetics. I was released from the hospital the December 15th.
I lost nearly 15 pounds - or more. Matt calls me his little pixie and my mom keeps trying to force food on me - telling me I look scary. I was so weak I could barely walk more than 5 minutes on my own.
I have been off work since December 2. Matt took off the whole month of December to be by my side nad to take care of me when I came home. I have a follow up MRI next week on Tuesday the 18th and I see Dr. Sullivan on the 19th. I am hoping to slowly return to work a couple hours a day by the first full week of February - but we will see how things go.
NO - I do not look scary. Dr. Sullivan took extra care to save as much of my hair as possible. There is about 1/4 inch of shaved hair about 2 inches from my hairline that goes from ear to ear like a headband. They pulled my skin back and made the opening in my skull in the back of my head. (Sorry to gross anyone out). Already my hair is growing back and you can barely tell that I had open brain surgery. I do have a couple hats that I do wear in public to feel a bit more comfortable - but I don't really need them if I choose not to wear them.
My boss has been more than gracious and understanding in all this upheaval. He has said to get well and not to worry, that my job is safe and there waiting for me when I am ready to return. Better than that - I have found that I will be working out of our Arnold location only 5 minutes from our home - so Matt and I are so excited!
My parents have been supportive and loving and they were just here visiting. My mom has done so much cooking and caring for me - there is no way to re-pay what has been given so graciously.
And to my husband - he was at my side every moment in the hospital and has been by my side every moment since. He has shown shown much patience and love to me and to our boys as he has been doing literally everything in the home. He has been burning the candle from both ends. He has been my source of strength and support through even my darkest hours through all this. His only concern has been what I need and my comfort. Sorry to publicallly embarass you babe - butI could not have made it through all this without you.
Overall, I'm doing very well. I'm sleeping A LOT less through my day. I was sleeping 4-6 hours during the day. Some days I don't even take a nap. I have a enjoyed some luncheons with some girlfriends and gotten out a bit. I still can't do too much as I still find I get tired - my stamina ia not back to what it used to be prior to surgery. Still don'rt have clearance from my doctor to drive. I look forward to getting back to my workouts and my normal active lifestyl;e in the next 1-2 months. I have been told to be patient and I try - but it is so hard.
Through all this - I never asked - "Why me?" I knew that was the wrong attitude to have on all this. Why not me? I knew in my heart the best way to deal with all this was to try to remain strong in my faith in the Lord. I still believe in miracles and I have seen one in my life in the past month. Thnak you to all our friends and family that have shown their love and support. Matt and I appreciate it more than you know. Im grateful to still be among all of you and to still be myself. lol