BACKSTORY: At age 29, I was diagnosed in November 2013 with a 3.1cm acoustic neuroma on my left-side. I did not experience any of the symptoms commonly found in others (hearing loss, tinnitus, balance, etc.), and the only real symptom that spurred my consultations with my primary care physician and subsequent request for MRI was a recurring sharp facial pains (trigeminal neuralgia) that would flair whenever I did anything with my left facial side (eat, talk, smile, brush teeth). The pain would come and go for days at a time and was severely incapacitating at times.
PRE-OP: Upon discovery of the tumor, I consulted with 4 different surgical teams to attempt to come to the best course of treatment that offered the greatest combination of quality of life, longevity of life, and with the least amount inherent risks. Some of the surgeons that I consulted with have been discussed in great detail on this forum and described as world-renowned, so I firmly believe that I sought out the best available prior to making my decision. One caveat is that since I am insured via the Kaiser Permanente system, that I needed to get my treatment via Kaiser surgeons or else pay the medical bills myself. Due to the location of my tumor and the way it was causing my neuralgia, all 4 recommended surgical removal as the best - and really, only - way to alleviate the pains. I was informed that I would have been a candidate for radiation treatment via CyberKnife had I not had the facial pains; however, I was told that radiation usually only kills off the tumor, so the remaining dead mass would still be pressing against my trigeminal nerve and causing the pains. To supplement this procedure, the doctor recommended debulking the tumor away from the trigeminal nerve and radiating the remaining part adhering to the facial nerve. I considered this option and contemplated my family's history of illnesses. Of the 4 surgeons, 2 recommended retrosigmoid and the other 2 recommended translabyrinthine -- with neither team giving me more than 5% chance of retaining my hearing during surgery. Ultimately, I decided to proceed with the translab approach since it offered the best exposure of the facial nerve early on and was the preferred method of my surgical team.
OPERATION & HOSPITAL RECOVERY: My surgery was performed on February 12, 2014 by Dr. Cueva and Mastrodimos of Kaiser San Diego, and I was scheduled to check-in at 5:30am and to be the first case of the day. They were a great team that addressed all my questions and concerns prior to surgery, and their years of experiencing both working on various brain tumors and as a team (for 10+ years) gave me great confidence in their ability. During one of my prior visits with them, I noticed that Dr. Cueva wore some crazy black tennis shoes with red flames on them. On the day of the surgery when he came in to check on me in the pre-op room, I commented to him that he forgot to put them on. When the nurses wheeled me in for surgery, he greeted me by pointing to the new pair of red flame shoes he put on and with a smile on his face; that helped to reduce whatever anxiety I had left. Then the team got to work.
The next thing I know, I'm in recovery and getting ready to be moved to ICU. The first night in ICU was the most difficult, having to adjust with a tight dressing wrapped around my incision site in addition to still feeling the effects of the anesthesia. I vomited a couple of times and was in pain for most of the night, with an hour of sleep occasionally sprinkled in. The nursing staff was great in providing as much comfort as possible, and Dr. Cueva and Mastrodimos did check on me as soon as they were finished with their second surgery of the day.
RESULTS: Apparently what appeared as a classic acoustic neuroma on the MRI actually ended being a facial schwannoma. The tumor itself was growing on the facial nerve instead. As a result, the team had to sever the facial nerve. By doing so, they were able to removed the entire tumor, and then spliced together the facial nerve by taking a nerve from my neck. I lost my left-sided hearing from the procedure, and did encounter moderate balance issues trying to walk the hospital floor. My tongue was numb and had the metallic taste to it. I also had heavy facial paralysis and mild numbness on the left facial side.
RECOVERY: After a 3-day stay in the hospital (including surgery), I was released and headed to my parents' house. It's been approximately 4 days since I've been released and I feel myself getting better and improving every single day. My left eye does blink along with my right, but only about 40% down naturally and is about 65% closed during resting. The doctors believe that the facial nerve should regenerate in 6-12 months and that I should have better movement at that time. Tinnitus occurs in the mornings when I wake up. I take my time to allow the tinnitus and accompanying headache to subside. After that, I don't really encounter it for the rest of the day.
I walk when I can to regain my energy levels. Still getting used to being SSD. The other day I thought a motorcycle was following us from behind during one of our walks, but it ended up being someone working on their bike on the block in front of us. Other than sound location issues, SSD isn't as bad as initially feared. Taste is improving, along with overall balance and strength. In a few weeks I should be in a lot stronger and healthier position.
OUTLOOK: Given that no one could have foreseen the exact characteristics of the tumor based on MRI alone, I feel very fortunate and blessed to have this type of outcome. I truly believe that Dr. Cueva's and Mastrodimos' medical experiences, expertise and skill helped us achieve this positive result given all the circumstances. I am also surrounded by a strong support group of family and friends, so it has made recovery much easier. Having facial paralysis isn't sometime I'd wish on anyone, but it is manageable and I don't let it affect my mood or overall quality of life.
I hope this post helps others as this forum has helped me during the entire process. With time things should improve for the better, and I look forward to working towards that goal and seeing improvements everyday.
