Dear Beth,
One morning last April, I woke up with no hearing on my left side. Within a month, I had a hearing test, 2 steroid injections into the ear drum and an MRI that confirmed a 1.4cm Acoustic Neuroma. This has rendered me 87% deaf on that side, moderate tinnitus and balance issues with eyes closed. I have had ringing in my ear for more than 10 years but thought it was related to aging...I was 53. Since finding out about my tumor, it has consumed me, overwhelmed me, angered me, scared me and paralyzed me emotionally. I did not have any Christmas spirit during the Holidays and that is not like me.
It is what I think about when I go to sleep and is the first thing I think about when I wake up. Then all day long, I have constantly make adjustments in my way of life for work (I do Home Health Physical Therapy), talking with my patients, meetings, when with family and friends. I constantly have to ask people to repeat themselves, or ask my husband to repeat what was said on the TV and use the speaker on the phone most of the time. I cannot be in loud places unless I put tissue or ear plug in my left ear. In recent months, I have had facial twitching on my left side, some headaches and daily fatigue. I nap almost everyday after work.
Because this has consumed me and my family for the last 10 months, I decided to have surgery and am scheduled one month from today with Cueva and Mastradomas at Kaiser San Diego. FOR ME, my tumor is small and yes, I could Watch and Wait but knowing this will never get smaller, has already made me deaf and my balance is already affected, I need to have this out. My husband just turned 64 last Sunday, I am turning 55 in June so we are not getting any younger. Our 2 boys are 21 and 19 but out on their own. So I feel it is in OUR best interest to do it now while we can still manage because if I wait 5 or 10 years, my husband may not be able to take care of me like he can now. Plus, my husband will probably need me to care for him in the years to come so I need to be at my best.
You will cry, laugh, scream, withdraw and go through a roller coaster of emotions. Let yourself do all of them because it's all part of the journey to help you make a decision. Some here have been Watch and Wait for many years and some do Radiation. It's up to you to decide and there lies the problem...deciding. It was the hardest decision I have EVER made but once I decided to schedule it, I told my husband that I felt a sense of calm for the first time in 10 months.
As the date gets closer, I still feel a tremendous amount of fear and yet I don't. Before I scheduled surgery, I joined the gym, hired a trainer 2 times a week and think of myself as an Athlete in Training...for the Event of Life. I can only hope the physical and financial investments will pay off for me post op.
I came to this site everyday for the first few months. In my 36 years in Healthcare, I had never heard of an Acoustic Neuroma so I view that as a positive. I was totally blown away when I learned it was a brain tumor. That being said, I have treated many people with malignant tumors, ALS, MS, and many different medical issues and I am blessed to have an Acoustic Neuroma. REALLY. If we are going to have a brain tumor, this is the one to have. There will be a NEW NORMAL but it could be worse.
So, stay strong, ride the emotional roller coaster willingly and get yourself prepared to make a decision. There is no right or wrong decision but you have to have the wisdom to know what will be the best for you and your family.
Best of luck to you.
