Luckily for the second surgery I was able to show up the morning of instead of hanging out for days in the hospital prior to the surgery. I was told that the recovery time post surgery would be 3-5 days-it ended up being more like 11 days (and I got to spend my birthday there). The reason they kept me so long-and most of the time I was in the ICU-was because I had high fluid pressure in my brain causing intense headaches. The doctor’s weren’t sure if either my shunt was working properly, a ventricle was blocked, or if it was normal aftermath post surgery. After the pressure and headaches gradually lessened in severity over the next several days they decided to send me home. I still experience headaches but they are not as intense or frequent as they were before. Another side effect
My wife took this picture the day I was released from the hospital
of the surgery was double vision. Because they accessed the tumor through the occipital lobe we new there could be issues with my eyes (mostly temporary). The double vision lasted quite awhile, but it too gradually got better over time.
The week at the hospital leading up to my first craniotomy was emotionally draining for both me and my family. The initial shock of finding out about my tumor took several days to sink in. Not knowing what type of tumor it was made it difficullt to process what the final outcome would be. Dr. Yang, my neurosurgeon, sat us down to discuss the possibilities of what it could be. He explained that it was very likely cancer and probably an intermediate to aggressive one based on the size and location. Because of the rarerety of my tumor, Dr. Yang and the neurosurgeon team at UCLA ran tests and met several times during the week prior to surgery to come up with the best possible plan of action. It was tiring udergoing several MRI’s, CT scans, angio grams, etc throughout the week and waiting around for the surgery. My wife drove out to UCLA with our son each day in the afternoons-long sleeved shirts were helpful since he liked to tug at my iv’s. The many family and friends that visited helped to distract me and break up the monotony of the hospital stay.
Around April 2012 I started experiencing what I thought was symptoms of a sinus infection. I had pressure on my eyes which worsened when I stooped down and the pain intensified to migraines. I also had issues with double vision and blacking out when stooping down low. After seeing an Ear Nose & Throat doctor and taking 3 rounds of different antibiotics over the course of a couple months I had no relief from the migraines and sinus pressure. In late May when my doctor told me that I didn’t have a sinus infection he referred me to get an MRI. On June 7th, 2012 the MRI indicated that I had a 4cm tumor deep in the center of my brain. I was told to immediately head to the UCLA ER to be admitted to the hospital faster for further treatment. After spending all day and night on a bed in a crowded ER hallway, unable to eat or drink, I finally got admitted to the hospital.
I had my first craniotomy a week after my hospital admittance on June 15, 2012. After taking two small biopsies my neurosurgeon aborted surgery once he was told that my diagnosis was cerebral glioblastoma. He gave a prognosis of “months” to live. After hanging out another week post surgery at the hospital to get a shunt in place and recover I was eager to brake free and go home.
Two weeks after my surgery my Neuro Oncologist explained the final pathology report from my surgery. Apparently the report indicated that the type of cancer had changed. I no longer had a grade 4 glioblastoma (GBM) but a grade 3 pineal blastoma. The prognosis was better because my life could be extended years with chemo and radiation treatment.
On July 19, 2012 I had my second craniotomy. This time the surgery outcome was much more positive than the first. The chair of neurosurgery, Dr. Martin, and the surgeon from my first surgery, Dr. Yang, worked as a team to complete the entire tumor extraction. Dr. Yang indicated that the surgery went better than they had expected. They were able to remove all of the tumor that they could visibly see. We are still awaiting new MRI results to see if there is remaining cancer cells that show up.