Jennifer "My Acoustic Neuroma Journey"

Photography by    Randy Bacon

Photography by Randy Bacon

What started as a “life event” turned into a “life journey” rather quickly. Let me start with how I discovered my tumor; I have always been active but when I started college I found my passion for running, I would usually run four to five times a week. While running I started to notice my headphones were going out in my right ear. I bought a new pair and the same thing happened. After about three new sets of headphones, I realized the headphones were not the problem. Within this same time frame, I realized I was also having a hard time hearing people talk to me when they would sit on my right side. I then went to Colorado with my (now) husband and his brother; I had snowboarded before and was decent at it but that particular time I tried to snowboard again and couldn’t make it down the mountain by myself because I kept falling over. All of this didn’t add up.  

So, I finally told my parents something wasn’t right. I went in for a hearing test and was told I was completely deaf in my right ear. They gave me three options for suddenly becoming deaf; 1) bad luck, 2) past cheerleading incident that just surfaced, or 3) brain tumor. So of course, I only heard option 3 and began to panic. I had an MRI done immediately and was told that I had an acoustic neuroma (a tumor on the main nerve leading from the inner ear to the brain). My father is a physician so I trusted him to help me find the best treatment facility to get recommended treatment options. After much research, we found Dr. Gail Neely from Washington University at Barnes Jewish Hospital in St. Louis, MO. Dr. Neely has been one of the founding doctors to operate on such a rare tumor, so I trusted him with the future decisions that were going to be made. I remember like it was yesterday; my Dad and Mom, me and my boyfriend (now husband) taking the elevator at Barnes Jewish Hospital that would ultimately change my life forever.

Our meetings with Dr. Neely started in February 2008 and were frequent but necessary as they were unsure how fast my tumor was growing. Dr. Neely went over the different treatment options with me; surgery, gamma knife radiation, etc. I tossed around the idea of doing the gamma knife procedure at first because with the surgery route they could not guarantee me that they could remove all the tumor or save my facial nerve. After much thought and discussion with my parents and boyfriend, we chose the surgery route (posterior auricular approach). Mainly, because I was so young and I did not want to have to continue to do radiation throughout my life if there was no guarantee of how aggressive the tumor was. I took a big risk in hopes my facial nerve could be saved so I could continue with my career dreams.

At the time, I was one semester + an internship away from graduating college with my degree in Broadcast Journalism; my dream was to be a TV reporter. I begged the doctors to let me finish my semester as I was taking 18 hours. They agreed and I had surgery in May of 2008. When they went in for surgery they found the tumor was sharing blood supply with my right facial nerve. Once I came out of surgery, my life was forever changed. I woke up to find I had no movement in the right side of my face. I was weak and had no balance on the right side of my body either. My right eye couldn’t blink, my mouth could not close all the way, I felt like anything they said could go wrong with my surgery did go wrong. The only positive thing to note is they could remove my tumor 100%. After being in ICU and then spending five days in the hospital I was finally sent home.  

I was sent home with a lot less than what I came with.  After a week of not being able to leave my parents’ house, they needed me to come for a follow up appointment - worst car ride ever. I got there, and I was too weak and uncoordinated to walk on my own, so I was assisted by a wheelchair. I was told that due to my facial paralysis, the cornea in my right eye was drying up and they were going to have to stitch my eye shut for a few weeks. (This is a side note but important to mention; I lost a dear friend of mine in high school to an addiction to prescription pain pills. So, I made myself and him a promise that I would try to endure this life event as medicine free as possible. So, a week after my surgery, I was only taking Naproxen and Excedrin migraine for pain management.) Once my eye was stitched shut, I felt as if I had hit rock bottom. I had no idea what to do, I was in so much pain and had such horrific headaches, I honestly had no idea how to bounce back.

I could go on and on with all the complications but I feel it is important for me to share with you how I got to where I am today. About five weeks after my surgery, I gathered enough energy to get up and walk down the street. All I wanted to do was workout, although I couldn’t get up and run four miles, I walked myself down the street with an eye patch and half shaved head. I might have looked quite odd to the regular bystander but my god I felt amazing. That was the first moment in my life I felt the appreciation of being able to walk. People get bogged down with everyday life sometimes and forget the small things and on that day, I was reminded how lucky I was.  

After about a year of physical therapy and seeing a headache care specialist, I finally could try yoga and it helped restore my balance. After about two years I started running again. With time I could run a 5k, then a 10k, and I am proud to say I ran my first half-marathon in December of 2011! After a knee issue, I started lifting weights to suffice until that healed, and I just recently achieved my lifelong goal of running a full marathon! Placed third in my female age division as well (quite proud of that one)! In May of this 2017 I celebrated my nine year anniversary since my surgery. Nine years and I feel great!!! I am proud to say I am medicine free, a new mother to a beautiful little girl, work full time, and can work out five days a week now.

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Although my dreams of being a reporter faded after losing movement in the right side of my face, I found a passion for health and wellness. Again, I had my surgery in May 2008, and I was lucky enough to finish my intern program at a news station that Fall, graduated in the Winter of 2008, and got a job doing Marketing for a medical clinic. After about three years of doing Marketing, I felt I needed to go back to school; to figure out where the heck to go from there since I spent four years on a degree that was obviously not in God’s plan for me. I took a step back and looked at my AN journey and wanted to focus on something that I experienced.  

So, I looked at what I felt lacked from my experience; doctor to patient communication, a community of support, and the awareness of acoustic neuromas. I got online to try and find other people that had AN’s and all I found was extremely negative/horrible outcomes of the surgery. I did not search long as I was horrified by what I read. From reading all of that, I decided the community and support (which was lacking) was not something I wanted to get involved in when I was still in the process of trying to heal myself mentally and physically. The doctor to patient communication area looked like a good route, so that is when I decided to go back to school and I received my Master’s in Health Communication, I graduated Suma Cum Lade in May of 2014. During my graduate studies, I focused my seminar work on wellness. Throughout my AN journey I found wellness to be my key to recovery. After visiting so many doctors and all they wanted to do was throw prescriptions my way, I took my own holistic route; living a healthy lifestyle through proper diet and exercise.

I went on and created a program for a local medical facility called Walk-In Wellness. It focused on prevention and helped individuals navigate a healthy lifestyle through means of awareness, education and direction. Going back to the lack of support I found online previously, I wanted to fix this and I also wanted to get more involved with others being diagnosed with AN’s pre/post op. I did some research and that is when I learned what Acoustic Neuroma Association (ANA) was and did for people like me. I got on the ANA’s Facebook page, gave a snippet of my story and told people that if they would like to talk, to private message me. I must say I have met some amazing people along the way through doing that one simple post. Also, some people within my local community have referred me to people they knew that had received an AN diagnosis and I have spent time meeting with them and their families over the past few years.  

In 2016, a local nursing college contacted me to come and speak with their students and that was quite scary for me as I usually only talk to people that have received the diagnosis or their families; not a group of people who have no connection to AN’s. I must say that was one of my biggest accomplishments from this journey; seeing a group of people that are getting ready to go out into the healthcare world, it was nice to give a patient view of things for them, and to put a few different things in perspective for them. That experience also sparked me to think what is next for me? I had done so many different things leading up to now, so what’s next,  Jennifer?

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All within the time frame of speaking at the college, someone I worked with was diagnosed with an AN. People would come up to me and ask if that was what I had and how come they bounced back so quickly and I made mine “sound” like it was so debilitating and horrible? First off, how offensive, and second, that is when I decided some awareness needed to be done in regard to what AN’s are, and how the outcomes can vary person to person. There are a lot of different factors that come into play, such as; what type of treatment you chose, the approach, the tumor size, etc.

I contacted the Acoustic Neuroma Association to learn more about their local support groups. They currently did not have one in Southwest Missouri, so I interviewed for the position and thankfully, I was offered the volunteer position. Our group meets quarterly at the Springfield library, we do Care and Share sessions for patients and their families. We also arrange guest speakers to come in and share new acoustic neuroma treatment methods, as well as coping mechanisms. It is a great way to get those of us in the community together that might not have otherwise met.

Once I started doing the leadership role for the Acoustic Neuroma Association that is when a lightbulb went off! My mission, my dream, my goal- start a local nonprofit to bring our local community together to raise awareness and money for those affected by an acoustic neuroma. Although, a rare diagnosis, it is LIFE CHANGING for those affected by it. I always revert back to one of my favorite sayings: “Be the change you wish to see in the world.”  So, I educated myself with everything I needed to know, met with professionals and that is when Team ANA 417 was established. Team ANA 417 represents a local community coming together to raise money for AN patients’ procedures and for acoustic neuroma awareness. May is Brain Tumor Awareness month, so that is when our first fundraising event will be held in 2018. Since holistic healing helped me so much throughout my recovery process, I felt a 5k fun run/walk was the perfect event to kick off acoustic neuroma awareness in our local community.  

So, this is my new chapter of the AN journey! As I come upon my 10-year surgery anniversary, I could not be more ecstatic as to where God has placed me. I am a true believer that everything in life happens for a reason. Attitude is something that can go either way for a person. My attitude going into the surgery was positive and although things didn’t turn out as I had hoped, that’s okay. I wouldn’t change it now because I truly feel this where I should be. That is why I want to share my story with others; my story is unique and I want others to see that a positive recovery is possible amongst those days when you feel the whole world is against you. I want to help in any way I possibly can, I feel as if it is my job to do so.

January 2018

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You can also read Jennifer's 'Backstory' HERE