Welcome

You gotta laugh or you'd never stop crying. . .

In 2008, I was stunned to learn that I had a brain tumor called an Acoustic Neuroma.  I had surgery two months following the diagnosis.  Since then, I've learned that for many people, not all, an Acoustic Neuroma introduces a "new you."  Navigating the new me has been a journey.

I want to share my experience hoping I can help anyone who is diagnosed, struggling with the aftermath of treatment, or a caregiver.  I had never heard of this rare tumor when I learned that one had been lurking and growing in my head for up to fifteen years.  After furiously researching, I learned that there are three treatment options. Ready for discussion, I learned that the only option for me was immediate surgery.  So, in November, 2008, I traveled to Mayo Clinic for brain surgery.

I hesitated to share my story since it is rare to have such chronic headaches following surgery.  I didn't want to scare anyone newly diagnosed who found this site.  However, I feel that information empowers us and that I am compelled to share. I am still in pain as I deal with disability.  My face has experienced full paralysis, significant healing, and now ongoing morphing of synkinesis.  Sometimes it is a struggle, but sharing with others has always enabled me to see the humor, joy, and hope in life.

Certainly, I encourage you to read my book.  I wrote it in the first year following surgery and tried to be honest about what I experienced, both physically and emotionally.  I welcome any questions that I can attempt to answer with my non-medical knowledge.  I will continue to update the FAQ's with information that I may feel is helpful in addition to the book.

I have become a writer and include information regarding other books that I have contributed to.

Thank you for visiting my site.

13 thoughts on “Welcome

  1. Sandy White

    Hi Sally,
    I saw your book and business card on Jackie Diehl’s desk this week. I am returning home (Warren, MI) from a visit with her and was intrigued and wish to read your story, especially realizing you’re from Michigan. As a 4-year post-op patient, I find it fascinating to read other’s stories. I have a friend who loves to write and some day publish a book and know how hard it is achieve this. You’re very courageous to put your story out for other, but like me, I like to help newly diagnosed patients too. As you know, there are no two AN journeys that are alike. I would love to read your book. Can you send it to me OR should I order from Amazon.
    My best,
    Sandy White

    Reply
  2. sallystap Post author

    Sandy’s book is in the mail! If you are interested in my book, please send me an email and I’ll get a copy to you! Sally

    Reply
    1. stephanie Gordon

      my fiance was diagnosed with a brain tumor in November of 2013. Since diagnosis he cannot communicate
      and presently crying out for headache. It is very frustrating for me when I see how he has become.
      The doctor said because of his age he won’t recommend surgery.

      I need support with regards this situation

      Reply
      1. sallystap Post author

        I’m so sorry. There are caregiver groups online and Facebook that provide much needed emotional support and tips for caregivers. As his advocate , you shouldn’t hesitate to ask his doctor for help with his pain.

        Reply
  3. Marsha Miller

    I had a acoustic neuroma in the inner ear several inches away from my brain. I went though a lot I would like 2 read ur book. My face is not the same but thx god I’m alive.Let me know what I have 2 do 2 get acopy of ur book, sincerely yours Marsha

    Reply
    1. sallystap Post author

      On my website just scroll down until you see the cover of my book and click. It will take you directly to Amazon to purchase. Thank you for your interest!

      Reply
  4. Tanya Lippre

    I have a tumor just below my brain stem in the back of my neck ; it has slowly grown visuabily larger as time went on! I’m 46yrs. A mother of four ; and a blessed gram-ma of five presious gran- children that i want’ to enjoy for a long time…

    Reply
  5. Jill

    Sally – my grand daughter who is only 13 years old has brain surgery in march for a gigantic acoustic neuroma. She has left sided paraylsis of her face and spent 3 weeks at a children’s rehab center following discharge to learn to walk, feed herself and regain some of her balance and strength. Next week she will finish her out patient and occupational therapy after 12 weeks when we brought her home. The end of the month we will see the plastic surgeon to get advice on options for her facial paraylsis. She seems to be just like you meeting the every day challenges with humor and strength . I feel myself falling apart not knowing what to do and not be able to fix the situation for her. I must stay strong but I feel she is so much stronger than myself. I do wonder why God would give such a horrifying surgery to a 13 year old child instead of an adult like me who’s life is half over anyway and hers had just begun. Do you think your book is more for adults or would this book be okay for her to read?

    Reply
    1. sallystap Post author

      I’m so sorry! 13 just doesn’t seem fair !! My book would be ok for her to read. I think she’ll see many common experiences. It may be helpful for you as her caregiver also. Thank you for your note.

      Reply
  6. Jill

    Can you buy your book at the bookstores or only on amazon? I usually don’t like to buy things on line.

    Reply
    1. sallystap Post author

      Yes. It’s sold at Barnes & Noble and available at independent stores also. You may have to ask them to order it because not all stores carry it. YET :)

      Reply
      1. Jill

        Sally- I love your new picture. You look awesome! I hope the plastic surgery can help my grand daughter to bring back her smile just like yours.

        Reply

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