Be Your Own Advocate
by Pamela Brown
I was diagnosed with AN in the early 2000s. My only symptom was twitching in my left eye. After the devastating news was confirmed, the neurologist discussed treatments, and I decided to have 24 sessions of radiotherapy. I was working full-time, so I went for treatments during my lunch hour. I experienced nausea near the end of radiation, but it diminished immediately after I finished my treatments.
Unfortunately, ten years later, I experienced regrowth. I had translabyrinthine surgery. This was a challenging and scary time. I was concerned about the lengthy recovery, and hearing and facial concerns. There was the possibility that my life could change forever. It was helpful to know that if I did experience these issues, there were procedures and devices available to help improve them. After surgery, I needed a wheelchair and walker until I was able to regain my balance with physical therapy.
I learned that hard work is necessary to achieve a normal lifestyle. It’s important to be responsible for your own well-being. Here are some tips that helped me:
- Talk with your healthcare provider frequently
- Go to physical therapy
- Keep learning about AN, stay informed on the latest treatments
- Join a support group – it’s helpful to hear how others cope, don't do this alone!
- Maintain a positive attitude despite feelings of defeat
- Be patient with yourself
- Exercise
- Have annual MRI
- If you use a hearing aid/device, keep them maintained to ensure that they are working properly
- Be your own advocate
- Ask questions
- Share your story, you never know who will read it and benefit from it!
My only regret is that I didn't seek support sooner, because I knew absolutely nothing about AN, so I hope sharing my story will raise awareness. Depending on your situation, you can regain some level of normalcy. 23 years later, I drive and carry on a normal lifestyle. As a retiree, I'm no longer in a rush and can still complete tasks - although at a slower pace. I am a different person but no less determined!
