“Oh no. You have a brain tumor. Cancer stinks.”
Yes, cancer is a terrible thing, but not all brain tumors are cancerous. Acoustic neuromas, as well as many other types, are almost always benign.
“When is your surgery?”
Treatment is not always surgery. Many patients are put into a “watch and wait” category, which means they are doing their best to continue day to day life with a mass in their brain. If there is not much growth or side effects, the tumor is left alone for years or forever.
Radiation is a second form of treatment. The tumor is radiated and dies, leaving the dead tissue inside. Radiation avoids the challenges of surgery, but can also bring the side effects of hearing loss or facial nerve damage.
There are many tumors that require surgery though, and some cannot be fully removed leaving patients at risk of regrowth. Many times a balance has to be made between retaining facial, balance, and/or hearing function with complete removal. This decision is usually made in the operating room. Doctor’s always strive to remove as much as possible.
Which leads us to the biggest myth:
“Benign is not harmful”
Benign is not malignant and that is a good thing. However, Benign does not mean that radiation or surgery was a simple in and out procedure. It doesn’t mean that you didn’t have damage to your body.
“You’re the same person, right?”
Well, actually, no. Even though an acoustic neuroma is at the cerebellum and brain stem and not in the frontal memory part of your brain, we have been changed. Maybe we have the same personality, but possibly muted. A thoughtful person in the past may now be much more appreciative. Individuals who were pain free in the past and unaware of what a migraine headache is are now learning to live with chronic pain. Perhaps without balance issues prior to treatment, that person is now careful to not turn too quickly – or may need a cane. Sometimes a person is now less tolerant of some things and more forgiving of others.
After AN diagnosis, many of us have an admittedly better lifestyle. We are more aware of our mortality and the importance of eating, sleeping, and exercising well – and consistently. We are more aware of relationships and milestones in life.
Many have shifted from living with a bundle of non-stop energy to now being fatigued by the extra work our brains have to do constantly. We learn that taking naps is a normal part of life and not something to feel guilty about. Our brains demand extra sleep to cope with pain, tinnitus, and balance challenges.
While many AN patients now have a better appreciation for life, they now battle depression – a physical reality as part of recovery. It’s a tricky combination to acknowledge and battle depression even while grateful for life itself.
Many of our friends and family take a while to recognize that the life of the party before is now unable to be in loud settings. An extroverted, life loving person is now perhaps more withdrawn in loud settings.
Not a myth – We are still here.
We are happy to see things that we may have missed given different circumstances. We want to push past our new realities and are a tenacious bunch. Everyone is changed by significant life events, and an acoustic neuroma brain tumor fits nicely into that category of “significant” – even though it’s benign. . .
FYI, here’s the definition of Benign and Malignant:
Benign tumors are typically slow-growing and rarely spread to other areas of the body. They often have well-defined borders, so surgical removal can be an effective treatment. However, the location of a benign brain tumor can have a significant impact on treatment options and be as serious and life-threatening as a malignant tumor. Benign brain tumors can be considered malignant if they are located in areas of the brain that control vital functions like breathing
Unlike benign tumors, the cell structure of a “malignant” brain tumor is significantly different than that of “normal” brain cells. Malignant tumors tend to grow faster and can be more invasive than benign tumors. Malignant tumors are life threatening. Sometimes malignant brain tumors are referred to as “brain cancer,” though they do not share all of the characteristics of cancer. Most notably, cancer is characterized by the ability to spread from one organ to another. It is very rare for a primary brain tumor to spread beyond the brain or spine.
Thanks for sharing all your information. Just recently I’ve known 3 people with brain tumors who have went through surgery. My cousin, just last week. Your posts help me to understand and know a little bit how to pray for them.
Bless you, Sally,
Thank you for publishing this. Sometimes my friends and family seem to think I am just making these things up, at least that is my perception. They seem to think that since my tumor is gone things should go back to normal. Some have a difficult time accepting that whether they or I like it, this has changed mt life and this is my new normal
ive just had a huge acoustic neuroma removed so everything that was said is true.
My son 14yo had his removed 14/11 5cm+ in size
Another great post Sally. I’ve shared on the ANA Facebook page – thank you for these wonderful insights!
Couldn’t be more true. Had a pear size tumor removed on 12/10/14 and my world is nothing like it was. Headaches are a constant, loud noises are a bother and I am tired and dizzy all the time. While I don’t like the new changes in me, I know it was a must to have this AN removed.
Geesh mine is only the size of a grape and I’ve had significant symptoms, even tho my doctors seem to think my pain isn’t even associated with the tumor since its “so small”. I find it hard to believe that my pain isn’t caused by it, being that my pain is specifically on my left side of my head (the side of my AN). I just had my stereotactic radio surgery two days ago. I’m very swollen and my hearing is way different, echoing and hearing loss to be exact, can’t stand loud sounds at all now, but at the same time need my tv loud enough to hear it. Guess I need to adjust to having captions on. Thanks for sharing this Sally, this is right on point!!!!
thanks very informative information. Sometimes it is hard explaining to people, i just say i am deaf, but in reality everything echos, even the sound of my own voice, some loud high pitch sounds really aggrevate me, but if I don’t concentrate when people are talking, all i hear is a muffled mumbled sound. I have a very small AN 9mm so have been watch and wait for over three years, but hearing gets worse every year. I have learnt to do things automatically to make it easier for me, like holding on when i lean over, otherwise i get rock the boat vertigo.
Thank you for posting this!
I occasionally write about my big fun //snark// times with neurofibromatosis type 2 and all my fab, resultant neuromas and meningiomas at my blog, Donna, Tell Me A Story. Here’s a link to my Nf2 specific posts http://donna-tellmeastory.blogspot.com/search/label/Neorofibromatosis%20Type%202
I HATE the word “benign.” So very misleading.
Thanks for your comment, Donna. I’ll check out your posts!