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 (2.8 cm). 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.
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.
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
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
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.
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
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!
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…
Yes, Tanya, life is precious. Especially with the tiny ones. They are so fun!
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?
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.
Can you buy your book at the bookstores or only on amazon? I usually don’t like to buy things on line.
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 🙂
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.
Just finished “Smiling Again” and so glad you are here to tell your story! As I read your account, I remembered my husband describing his feelings in much the same way. (He has a tumor that has come back and so far refuses any more surgery. I’d really like to ask you a few questions if you’d have time to respond to an email. Thanks for the opportunity to read your book!
Absolutely. My email is firstname.lastname@example.org
I am thrilled to find your book via Google. Can’t wait to read it! at 42 I have been diagnosed with a schwanoma 7mm in size currently. I am wait and watch. I have reached out to ANA and that has really given me a feeling of whew I am not the only one dealing with this and people do go on to live normal lives.
Hi Dawn! I’m glad that you found me too! I don’t know if you are active on Facebook, but there are some great support groups if you search Acoustic Neuroma. As you will find, each journey is unique but we all find answers and support in community.
Bought your book for my father (3 years post op for removal of AN) and he said, “it’s like I wrote the book.” Passing it through the family so we can understand more what he is dealing with. He is still dealing with facial paralysis (result of surgery), dizziness, headaches, deafness (one ear) and vision loss (result of surgery) but is a strong man determined to not let it slow him down. Although at times he says he wish he never had surgery….wouldn’t do it again if he had to choose again. Can’t wait to read your book!
Heather, I’m happy to hear that my book is helping your family understand what your father has and is going through. Thank you for your comment. Sally
I was diagnosed in August with a very small AN – 1.5mm (not cm). I’m 48 and have degraded hearing in my left ear (the AN side). I will be having surgery for removal in late January. Looking forward to reading your book!
Thank you for your note, Jerry. Mine was 2.7 cm (not mm) so hopefully you won’t have some of the issues that I had. It was growing for probably 10-15 years before I found it. Darn. Sally
I had the opportunity to read your book over the holidays. Great job! I am 2 years post op on Feb. 8th 2015. I have been writing a blog and just posted my two year ANniversary. In my blog I included your website and a short note. Thank you for sharing your story. http://www.myanjourney.com
Hi Matt, Your website is very nicely done! Congrats on your two year ANniversary!! Thanks for stopping by! I appreciate the comments you put on your blog. Sally
I am representing the South Haven Scott Club and would be interested in how much you would charge for a 30-40 minute lecture.
While looking through a selection of books on Kzoo Books website, I discovered your Smiling Again! I was thrilled and excited that you had shared your journey and equally excited to learn that you are a Kalamazoo resident as I am. I had surgery for a large tumor ( golf ball size) in November 1988 at U of M in Ann Arbor. I attended a support group at U of M where we shared our stories of recovery from surgery along with the pain and emotion in our lives. I have complete hearing loss of my right ear, paralysis, and an eyelid which is nonfunctioning. It has been a difficult journey but a sense of humor has been a lifesaver when life throws you a lemon!
I am anxious to read your book and hopeful that we can meet. Thank you for sharing your story and letting AN patients that they are not alolne.
Hi Mary Anne – there are a few of us in Kalamazoo. Maybe we need our own group! Thanks for your comments. Sally.
Hi Sally. I am so glad I found and read your book “smiling again.” I had surgery in Feb. Of 2017. Since I continue to have dizziness, dry eye, headaches, and facial pain. Unfortunately, my neorsurgeons have not been supportive. Neither of them understands why or how I could still be having these issues. They say they have never had patients who continued with these symptoms past 3 months post surgery. I began to wonder if it was all in my head (no pun intended.) Your book helped. Validate. What I am going through. Do you have any suggestions of who I. should see in the medical field to help understand me?
Michele, you are not alone!! (Unfortunately). Are you on Facebook? There’s some great groups of people just like us. Great support. Regarding doctors, the surgeons are done. So you need to find doctors for any issues. Pain management, opthomologist, physical therapy. Hopefully you have a supportive general physician who can help you find specialists. I’m sorry to hear that you’ve got ongoing issues! Thank you for reading my book and leaving a note! Sally
I am having the same issues with my Drs, just had radiation 3 weeks ago was pretty darn sick the nights following, my balance is worse, and the ENT told me before hand that the hearing loss which is completely gone in my left ear and loss of balance and vertigo, and tinittus were unfortunately permanent. My radiation oncologist is telling me that my symptoms will all go away I am very confused and unfortunately Medicaid is my insurance which although I am grateful for, you don’t get a choice in physicians this group has helped a great deal but leaves me looking kinda crazy as far as my family is concerned, what are they supposed to to think when they hear a Dr say this? “Frustrated” good luck to each and every one on their journey! God bless ❤️
Hey Sally, I just finished re-reading your book. I integrated a chapter a day over the last month or so with my short stack of morning reading. Enjoyed it more this time! I’m setting it on Barbara’s night stand so she can re-read it as well. I hope your Covid-time has been fruitful! Hope to see you soon at writer’s group!