In 2014, I recognized I had deficient hearing in my left ear.
In early 2015, I met with the local ENT practice, who told me it was nothing to be concerned about but "come back in 6 months." I did not return.
In early 2017, I went out of my local community, to be seen by an ENT, whom had their on staff PHD Audiologist who ran several types of hearing tests. The results pointed to a strong possibility of an AN and an MRI brain scan confirmed its existence. The ENT explained I had three choices: wait and watch, radiation treatment or surgery to remove tumor. Due to my age and knowledge of the seriousness of the surgery, I chose radiation and he referred me to a Radiation oncologist in the area. However, this physician and his practice did not treat AN. He, in turn, referred me to a Radiation oncologist connected with UofF hospital, in Gainesville, Fl. I met with him and he urged me to consider SRS, ASAP.
Not that anxious to jump into having radiation, a knowledgeable family member suggested I see an Otolarynologist. I met with Dr. Antonelli (UofF Health) and he strongly suggested, I wait a year, then do another MRI and evaluate growth of the tumor.
Early 2018, after having another MRI, I met again, with Dr. Antonelli , who reviewed and confirmed the tumor growth was significant and recommended SRS. He also pointed out that my sense of balance was off and that it could be attributed to AN condition. To improve balance, he recommended learning Tai Chi. For treatment, he referred me to Dr. Wm Friedman, Neuro-Surgeon at UofF Neurological Hospital Center. I met with him, he confirmed that my AN could be treated with SRS and his staff made arrangements for pre-op and treatment.
The UofF SRS- Linac treatment team consisted of Dr Amdur, radiation oncologist, Dr. Bova, developer of the system and radiation physicist, staff of dosimetic and computer programmers and an excellent support nurse and her assistant. The procedure consisted of: meeting with other patients with Dr. Bova who explained what to expect and answered questions. Next, a CT scan and a head holding devise was put in place. Family /friend were allowed to keep you company in the holding room. For the treatment itself, the patient lay on a table and the head gear is positioned and secured to the treatment table. The radiation is delivered thru machines that rotate around the head. Dr. Bova was there and talked with me in between each sequence dose. Total time was about 40 minutes.
Next, the head stabilizer was removed and contact points treated. Returned to holding room, for a few minutes to get my bearings and I was released to family care. After effects: slight headache for remainder of the day and the puncture spots were a minor annoyance.
Next step is a follow up MRI in 12 months.
From the beginning, I felt I suffered a great deal of anxiety regarding my AN diagnosis, in part, because those I sought information from early on, really had little or no knowledge of the condition. I found the physicians that saw me, who were AN knowledgeable were able to answer the questions I could remember at that moment, but later, it was a challenge to get past office staff on the phone for additional questions to be answered.
None of the physicians/hearing professionals/ office staff, I met with provided me with any written information on what and why I had an AN or what to possibly expect with it’s growth or treatments or their possible after effects and outcomes. I found the ANA and information on the internet. I felt fortunate that I have computer access. I thought of others who do not have access or skills to research on the net.
It was very helpful to find ANA, for information and, most important, it gave me a chance to link to one other person who had SRS-Linac at UofF Health. Up until I found his entries, I was in fear for my life.
His entry told me what to expect. He described the pluses and minuses he experienced honestly. This let me begin to let go of my anxiety, which made me a better patient and a far more relaxed person. I am so very grateful.
I hope my experience relayed here, will be helpful to someone else.
I am 2 days post treatment. I feel a little wobbly and fatigued, but overall good. Time to get up and get moving. Plan to return to Tai Chi next week.