With the London Marathon just EIGHT WEEKS away, I’m highlighting a few stories to share how important this run is to not only me, as I run in memory of my mom, but also to millions of others who have faced the diagnosis of a brain tumour.
Not all brain tumours are cancerous – but benign is not fine, as we say!
The location of a non-cancerour brain tumour can have significant impacts on a person’s health, abilities, and well-being, too. Depending on the size and location, it can also impede vital functions (eg: breathing) and result in death.
Today, I’m sharing the story of my friend, Keri Jacobs, another runner who received the diagnosis of an acoustic neuroma, a type of brain tumour that impacts the acoustic nerve, causing hearing loss in varying degrees from minor to complete hearing loss – amongst other issues and a harrowing, expensive experience with surgery, treatments, and uncertainty.
Here is Keri’s story:
It took a while to come to the diagnosis of my acoustic neuroma. I had hearing loss – I kept thinking it was an ear infection that would finally go away. I went to the doctor a few times. Finally the doc said I should head to an ENT. One I explained my hearing loss to him, he ordered an MRI with contrast that was scheduled for November 2008. I was set to run my first ever marathon at the end of October. I did NOT want to know if there was anything major wrong with me, and I felt fine, except for the hearing loss.
October 2008, I completed the Marine Corps Marathon (picture below, left) and had my MRI a few days later. When I went to my follow up appointment, the receptionist said, ‘Come on back. The doctor wants to see you right away.” He explained that I had an acoustic neuroma tumor that was lodged on my brain stem – typically slow growing. At first I thought I could carry on and just get a hearing aid and wait for it to grow before removal. Like I said, I felt fine.
I went home feeling a bit nervous, but I didn’t take the news as seriously as I should. I remember finding an online group – Acoustic Neuroma Association. I joined their online forum. That was a blessing – I found so many friends who were pre and post surgery.
The next step was a visit with the neurosurgeon. There were several options for treatment – watch and wait (what I had been doing), radiation, or surgery. My doc explained that having surgery (translab is the short name) would sever my hearing nerve but save my facial nerve (this ended up not being correct). I selected translab and we scheduled surgery at the end of January 2009.
Since I felt fine, I was in denial about how complicated and serious the surgery was. My husband and kids were way more stressed out than me. As the date grew near, I did start feeling ‘wonky headed’ — a term used by ANers to describe the out of balance, out of sorts feeling. The AN forum and friends I met online were such a help and source of support.
The surgery date was close to the 2009 Super Bowl (Steelers and Rams). I honestly thought I was, post surgery, have my friends visit my hospital room on Super Bowl Sunday, sit out in the lounge with them (maybe one would even sneak a beer in). Wow, was I wrong!
I woke up from a 12 hour surgery so out of it. I was on constant pain meds, shots in my stomach, brain scans in the middle of the night (the ‘tube’ was busy during the day), and my head, ear completely bandaged. My face would not work correctly on the left, my hearing was gone on the left side, and I was so out of it! I recall the Big Game was on in my room for my husband who was with me in Neuro ICU. All I remember was the first strum of Bruce Springsteen’s guitar at half time and Kurt Warner’s pick 6 at the end of the game. I went back to lala land after thinking, “Oh I guess the Steelers won.”
I stayed in Neuro ICU for several days. The neurosurgeon had to sever my hearing nerve, my vestibular nerve (for balance) and scrape the tumor off my facial nerve. I was deaf in my left ear, more wonky headed than ever, had a swollen face, and partial facial paralysis on the left side. It took my eye many months to open and close properly. They removed part of my skull, replaced it with a titanium plate, and removed ‘fat’ from my abdomen area to stuff in the back of my head.
Once I was released, I had difficulty walking and had some major headaches. My eye would not open or shut just right, and I had to keep this goo on it so it would not dry out. Still I was thankful I had made it through the surgery successfully and the tumor was indeed benign.
I healed slowly with help from my husband, our church family bringing meals over, and my sister helping with my care. Around 3 weeks post surgery, my doctor said I could resume a slow walk or run, as long as I felt okay. I started going on some walks and slow jogs. I built up my mileage – 3 miles, 5 miles, 8, 10 and was able to finish a slow half marathon two months post op. My husband was at the finish line – it was a proud moment!
I am now 15 years post op. I have no hearing in my left ear. I have tinnitus at times. Somehow I can run and walk and bike; my balance is not severely impacted, but I still do look a bit out of balance when walking slowly. I seem a bit woozy at times. I have no sense of directional hearing (from being single sided deaf). If I lose my phone and someone ‘rings’ it, I still have no idea which way the sound is coming from! My facial nerve did sustain damage. I can’t smile just right – I’m lopsided. I can get self conscious about this at times. When I eat, my left eye just waters for no reason. When I’m in a crowded room or setting, I cannot hear or understand much of anything, even with my good ear.
In spite of it all, I am thankful that I am in good health. I’m grateful for the support of my family and for my AN group. Even though we don’t really get on the AN forum anymore, many of the friendships developed are lifelong – some I’ve met in person. Regarding my pictures (above): the one on the left is pre surgery. On the right is post surgery. I smile a ‘certain way’ to hide the fact that my face is partially paralyzed.
Even though an acoustic neuroma is rare, if you have any symptoms that just make you feel ‘not right,’ please make sure and get medical attention. My heart does go out for all those who have lost their loved ones to brain tumors / brain cancer. Any time you hear the words, “It may be a brain tumor,” it is a very scary time. I am thankful for my friend, Robyn, who raises awareness and runs in memory of her mother.
Robyn Runs the World 