Brain tumors and stuff…..
Something I dont talk about a lot… quite a few years ago when my children were younger ( 2,5,7 and 9 years old), I was diagnosed with a very rare type of benign brain tumor. An Acoustic neuroma, also known as vestibular schwannoma. It is a non-cancerous tumor that develops on the vestibulocochlear nerve, which is responsible for hearing and balance.
Symptoms of acoustic neuroma can vary based on the tumor's size and growth rate. Common signs include hearing loss, tinnitus (ringing in the ear), and balance issues. In some cases, you may experience facial numbness or weakness if the tumor compresses adjacent structures. I was having these really awful dizzy spells and then woke up one morning and my ear felt “ plugged”. I went to the doctor thinking I had wax in it….if only! I was immediately sent for an MRI and learned that the tumor although slow growing was already too large to operate without risk of severing my facial nerve leaving me with one sided paralysis in my face. My next best option was Cyberknife radiation to try to kill the tumor.
CyberKnife is a non-invasive radiation therapy system used to treat tumors, especially in the brain and spine. It uses advanced technology to deliver targeted radiation while protecting healthy tissue. The treatment is usually done on an outpatient basis, so patients do not need long hospital stays and feel minimal discomfort. CyberKnife can treat difficult tumors in challenging locations, making it an important option for cancer patients looking for effective and less invasive treatments. When they say non invasive, picture for a moment having a mesh mold made of your face and head, then having that mesh mask secured to the tble holding your head in place. Yes non invasive, but also terribly frightening and uncomfortable. Thankfully I had a great team of ENT’s, neurosurgeons, and radiation oncologists to help make decisions and provide treatment.
I underwent the radiation treatment, and initially symptoms worsened. The tumor swelled, pressing on my brainstem, and impacting every aspect of my life. It was such a challenging time and I remember just being scared of the possibility of not being around to raise my children. Following radiation initially I had MRI’s every 6 months then eventually switched to annual tests. By the fourth year post treatment the tumor was showing some signs of necrosis in the center and was considered stable.
The biggest challenge in this diagnosis wasnt the tumor itself. It was a combination of the side effects of treatment and fear. The radiosurgery caused a lot of miserable side effects, including insomnia, low cortisol levels, weight gain and steroid myopathy from the corticosteroids used to control the tumors swelling. Constant ringing in my ear, hearing loss, and balance issues all affected my ability to do many things that I loved. Greater than all of that was the constant fear involved with the diagnosis. Each year when it would come time to have an MRI, I would panic and let the stress and fear consume me. Luckily, the radiation appears to have been successful thus far, and although the tumor is still there, it is stable and not growing.
I like to think that only I am aware of the residual effects of the radiation treatment, although occasionally now my kids will joke about my “hearing being terrible” or my face seeming crooked in a picture. I’m thankful and so blessed for the time that the treatment bought me and the fact that I am in fact still right here, enjoying my husband and kids and living my life to the fullest! I believe that the experience gave me some perspective. I never became cynical or jaded. I never asked “ why me?”. I was always just thankful it was me and not someone I loved dealing with it. I will continue to monitor the tumor with mri’s and count my blessings!
