It is National Acoustic Neuroma Awareness Week, who knew?
Most people have probably never heard of National Acoustic Neuroma Awareness Week let alone know what an Acoustic Neuroma is, but this is a subject near and dear to my heart. So I decided I should do my part to raise awareness too.My best friend was diagnosed with an Acoustic Neuroma brain tumor four years ago this month. I will never forget the day she called to tell me they had finally diagnosed her severe headaches. It was Memorial Day Weekend. She waited to call me until Monday because she knew we were out of town with family and didn’t want to “bother” me.
For my friend, it started with headaches that just continued to worsen over time. She had multiple doctor appointments but no one seemed to know what the cause was nor were they able to resolve the headaches. The headaches were getting so bad that they were beginning to interfere with her day-to-day life. Our sons were juniors in high school at the time, and you can imagine the number of activities that they have. Her headaches were preventing her from attending some of these events, and her social life was suffering as well. By the end of the day, she just didn’t have enough energy to consider meeting the girls for dinner or joining us for our weekend couple’s dinner.
Finally, after many months of doctor visits, she found the right doctor and was diagnosed with an Acoustic Neuroma brain tumor. I guess the “good” news was that this type of tumor was not typically malignant, but the scary news was that it was a large tumor and had likely been growing for several years. Here are some important points to know about Acoustic Neuroma Tumors as outlined on the ANA website:
- An acoustic neuroma, also called a vestibular schwannoma, is a rare benign tumor of the balance and hearing nerves. 95% of acoustic neuroma (AN) are unilateral (occur on one side).
- Acoustic neuromas do not metastasize (spread) to other parts of the brain or body.
- According to oxfordjournals.org, It is estimated that the instances of acoustic neuroma are 3.5 in every 100,000 and more than 5,000 diagnosed annually in the US, accounting for approximately 7.5% of brain tumors.
- AN’s are usually slow growing; however, growth rates do vary.
- Initial symptoms include single-sided hearing loss, balance disturbances or vertigo, tinnitus, and a feeling of fullness in the ear
- If an acoustic tumor becomes large it may push on the surface of the brainstem but not really grow into brain tissue.
- Continued tumor growth that goes untreated may threaten neurological function and even life.
- The treatment options are observation, surgical removal or radiation.
Since the initial diagnosis back in May of 2013, my friend has had over 10 different surgeries including one emergency surgery prior to the removal of the tumor due to the pressure the tumor was placing on her brain.
My best friend is the most amazing woman I know. Following her surgery she has lost the hearing in her left ear, has impaired vision in her left eye and has had muscle and nerve damage on the left side of her face. She has seen the best surgeons in the country who have performed a variety of surgeries to stimulate nerves and move muscles from her leg into her face to try to stimulate new nerve growth and help her regain her beautiful smile. Through it all, she continues to be the best friend, teacher, mother and wife always looking out for everyone else. Never giving up!
During these last four years, we have celebrated high school graduations, college graduations and the weddings of both of her daughters! We have also celebrated seeing the improvement of the muscles and nerves in her face. Shedding tears the day she sent me a video of the beginning of a smile. Her face was beginning to move again!
This week she posted the following:
“Four years ago I started this journey. I now live with a new normal and I have learned a lot about patience and perseverance and the importance of family (without whom I could not have survived.) And most importantly...everyone you meet is fighting their own battle, whether you can see it or not. Be kind.”
I couldn’t have said it better. But I would have added, that her example of patience and perseverance gives us strength each day to fight our own individual battles. She is the epitome of strength and beauty, compassion and thoughtfulness. I have learned so much in the last four years living through this experience with my best friend. I hope you learned a little bit today while reading this blog and will take a minute to raise your awareness.
Donna Thiel is the Director of our Compliance Integrity team, a consulting division of ProviderTrust. Donna works with compliance officers across the country to help reduce the stress and anxiety of this very difficult role.