Acoustic Neuromas – Alive, but. . .

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Acoustic Neuroma survivors are just that. We have survived. We are alive. We are grateful to have days and moments with our families that we would not have had without intervention.

I was able to walk my daughter down the aisle at her wedding. I have been able to hug, kiss, and adore my grandsons who I might not have ever met. I’ve loved every minute with family that is spent laughing, sharing, or even crying. I’ve truly appreciated the friends in my life who I can travel, play computer games, or have lunch with. I have been enriched by meeting people in my life who I wouldn’t have meet prior to a left turn in life caused by brain surgery.

Other AN survivors would say the same thing. We know that life is a gift not to be wasted. We know that memories are being made that might not have been.

But. . .

It’s OK to have a down day. Like any loss in life, the absence of something is felt in our changed hearts. So, it’s OK when we have a day to say “Yikes, just let me exhale and feel sorry for just a minute.” It’s good to adapt to life’s changes; even as it’s OK to feel disappointment. It takes energy to move forward, which means we have to tuck into ourselves at times to reach our spiritual reserves.

Acoustic Neuroma brain tumors leave each with unique check marks on a menu of outcomes or ongoing issues:

For those impacted by facial paralysis, full or partial, we miss our smiles. Faces are the first thing that people see. We don’t think we’re adequately expressing what we’re feeling when part of our face is frozen, experiencing Synkinesis, or tied up in knots. Yes, I reread the blog post that I myself wrote about smiling and pictures after squirming in front of a camera recently for friends who sincerely want me in their memories. Those around us see into the moment, not the expression captured in a picture. We have to continually remind ourselves of that.

For those with trigeminal nerve damage it means a loss of sensation on the face; or a change in the taste of food.

For those with single sided deafness – yes, we are also single sided hearing. But we miss being able to discern the source of sound. We feel apologetic to anyone sitting on the deaf side in a noisy restaurant after we’ve said “what?” for the tenth time. We feel bad for people who think we were indifferent when, actually, we didn’t even know we were being talked to.

For those experiencing nonstop tinnitus, we miss silence. There’s nothing like the silence of a summer night dotted with crickets chirping and frog croaking. We remember that sound of nothing, but live with ringing in our ears which varying from annoying to downright irritating.

For those with head pain – Post-craniotomy head pain is not merely a headache. Finding energy to compartmentalize pain and continue with life can be exhausting. Medicating to the point of less pain leaves us exhausted or downright unconscious.

For those with dizziness or balance issues – We miss window shopping as we can’t walk forward looking sideways anymore. We find ourselves in an awkward pile on the floor more often than in the past. We laugh it off, but it can be scary.

Recovery is an ongoing process with ups and downs. For anyone for whom those swings have not stopped, support and encouragement from other ANers in support groups is priceless. Acceptance and love from people in our lives is immeasurable. We delight in normalcy. Thank you to the people in our lives for listening. Not trying to fix the unfix-able but for providing constancy. Thank you for letting us feel sorry for ourselves on occasion and then pushing us to see the good in our lives. Thank you for reaching back as we reach out.

10 thoughts on “Acoustic Neuromas – Alive, but. . .

  1. Wanda S. Maxey

    Sally,

    Thank you for sharing your heart and giving us another look behind the scenes.
    My aunt went through a surgery, many years ago, and I never understood much
    of what she went endured, I just knew that I loved her and her crooked smile.
    She’s with the Lord now, and I miss her. my aunt Sally.

    God bless you,
    Wanda

    Reply
  2. Julie

    Thank you, Sally. I have been bottled up for 5 years and reading your message has enabled me to break through my own silence and allowed me to acutally turn the clock back and relive my journey somewhat by letting feelings flow that have long been submerged for fear of upsetting someone, anyone, maybe even just me.

    Reply
  3. Rebecca Davenport

    It hits the nail exactly on the head. I could relate to every word in this short article. Sad but true… we are survivors, every day! Moving forward and enjoying every moment, having been given a second chance of life.

    Rebecca D.
    Acoustic Neuroma

    Reply
  4. Jerry

    I remember my Father’s crooked smile and the many times he responded with “huh?” or “What?” I am encouraged by your reassurance that it okay to have a down day whether I have AN or not! Thanks Sally!

    Reply
  5. Grace

    For a moment I thought, “wait…did *I* write this?!” That’s how closely your account of the post-AN era matches mine. About the only difference is that I do have partial hearing on the operative side; I had a middle fossa craniotomy and the surgeons were able to spare the auditory nerve. The vestibular nerve, on the other hand, had to go…so definite balance problems!

    Sometimes it’s hard to express to others just how life-altering an acoustic neuroma brain tumor, and its removal, can be. I’m glad there are people out there who get it. 🙂

    Reply

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