Congratulations to the ANA on its 40th anniversary! It is a joy to see how ANA has grown, and to remember that I was fortunate to be one of many who were part of its development. I was the ANA’s Executive Director from July 1996 until March 2005. I truly admire the work of the Executive Directors that followed me and it’s evident that the ANA continues in good hands, moving forward and effectively serving the needs of acoustic neuroma patients. Sincere thanks to all those who have continued to advance the organization.

When I was first diagnosed with my AN, I had researched online and discovered the ANA. I phoned the office. I spoke to wonderful people who listened, cared, sent me information, thus, I was able to reach out to others that also endured AN journeys.
My hope for the next decade of the ANA is to find out why AN’s develop through research, which hopefully will also lead to enhanced treatment options to minimize post-treatment impacts, and also continue being a lifeline to those of us with AN’s. Congratulations to the ANA for 40 years… and to Ginny Fickel Ehr, thank you!

Congratulations on this anniversary and all your great work. I know that for me, you being there, always more than helpful, with information and support has always been appreciated. I know that I am also speaking for my sister Sara.
I wish you and everyone at the ANA, many, many more years of success.

I had surgery (successful) for an acoustic neuroma in 1980! Just as ANA was beginning. At 82 years old I am alive and well.😊
I have no facial paralysis. Deaf in the right ear and impaired balance. You won’t hear me complain. I have been alive to raise our two daughters, have three grandchildren. Vince and I have been married 58 years. I am grateful every day and I hope this will bring encouragement to some.

It has been two and a half years since my AN diagnosis. My husband (pictured with me) discovered the ANA website and materials that guided my treatment choice. We would have been lost without the valuable resources of the ANA. The discussion forum, peer support volunteers, support group and countless outstanding online presentations have guided us throughout this journey. We are still learning and I am now a peer support volunteer. I hope to give back to the organization through this work. My husband and I are now enjoying a wonderful retirement. I am so thankful for this organization and offer congratulations on 40 years of success!

The ANA was there for me at several critical points in my journey. I found their information on their website on my way to meet with my ENT to get more information about the brain tumor I had just found out I had. Reading the ANA's resources in advance of that first meeting helped prep me with questions to ask and have an idea of where this diagnosis was going. I also used the Peer Mentor program and the discussion forum to ask questions of other AN warriors as I was going through my recovery. I have now been volunteering with the ANA for several years and it has been a fabulous experience getting to meet other AN warriors and support them on their journey. I have so enjoyed being a Peer Mentor, hosting a Community Connections meeting, and leading the Young Adult Support Group. It has been so rewarding to take a difficult experience and use it for the good of others, and the AN community is full of spectacular people I feel so lucky to be able to connect with.

I received my AN diagnosis the Friday before Thanksgiving in 2012. I came home in a fog and immediately googled Acoustic Neuroma and found the ANA. Within 24 hours I had the Peer Mentor List and began calling everyone on it and was so grateful for how open everyone was about their experiences and making a treatment decision. I chose Gamma Knife In January 2013. Fast forward to today and I am happy to say I am a peer mentor and a board member. And I can say I am in the best health and fitness shape of my life!

I was diagnosed in July of 1990. My doctor put me in touch with the founder of ANA G. Fickel, who I spoke with over the phone which helped to calm me down, which I needed at the time. My miraculous recovery from a medium to large tumor involved loss of some hearing in the affected ear and some facial and right side weakness. I am 78 now and thank God for the extra time to live a full life.

My diagnosis came in 2004 when the internet was still finding it's feet. The ANA site provided some great information but finding out what to expect written by people who had experienced AN rather than just medical facts was difficult to find.
I came across a link to a web diary (blogs weren't a thing yet). A guy from the US had journaled his experience from pre-op to several months post-op. It was an uplifting diary that helped me learn what to expect regarding mobility, pain, hearing loss, and facial paralysis post-op and to keep positive about life beyond AN.
It inspired me to do the same, so I began my own web diary starting from a week before my procedure in May 2004 and continued it for the next few years, updating it daily, weekly, monthly then yearly as time went by.
In 2019 I published a book with the full diary of 15 years of experience along with the ups and downs of having a BAHA.
I still have single-sided deafness from the op and occasionally the lack of balance on the right side causes a tumble. My face only looks slightly paralyzed when I yawn but all these are nothing compared to what might have been. I value life and never take anything for granted.
Thanks for your great organization and the help you give.

I was diagnosed with an acoustic neuroma when I was 22 after sudden onset dizzy spells. It was the scariest time of my life. Prior to that first dizzy spell, I was a perfectly healthy 20-something year old, and a newlywed to boot. I was just enjoying my life, and suddenly I had this thing growing in my head.
When I went in for consult, my surgeon told me I'd probably had the neuroma for 10 years or more. It had grown so big, it was cutting off the flow of my spinal fluid, causing the intense dizzy spells. He estimated that I probably had about six months left before the tumor cut off the flow of fluid completely, leaving me in an irreversible coma.
They removed the acoustic neuroma 19 days after my 23rd birthday, leaving me deaf in the right ear and without a right balance nerve. My facial nerve was doing some insane acrobatics to avoid the tumor though, curling up and over and away from it. Though I did have temporary paralysis, I regained total motor control in my face with therapy, and learned how to re-balance myself.
I am forever grateful to my medical team that took care of me pre-surgery, during surgery, and post surgery. Because of their care, I went on to give birth to two perfect boys and am expecting a beautiful little girl any day now. Because of their dedication, my husband and I are about to celebrate our 10th wedding anniversary. Because of their compassion, I am alive, and I am grateful for it every single day.

I support the ANA because of what a huge resource and network it was for me from finding out about my tumor as well as getting me connected to others in a similar situation. I have a heart for the community especially when there are amazing organizations like yours who are supporting people going through something so shocking and life altering. I want to support the ANA so that you can continue to reach more people and continue to come alongside us who are diagnosed.
I love the ANA and what you do for us and our loved ones. I want to help make a difference for those that come after me in diagnosis.

The sunset bicycle photo symbolizes my joy in recovering bike riding for work commuting as well as for enjoyment. I also really love this quote for the AN journey, "Life is like riding a bicycle: to keep your balance you have to keep moving."

This piece reflects the AN survivor. The swan can be very calm, beautiful & peaceful, but also feisty & determined. AN patients have to have these same qualities. When an individual meets someone who has gone through an AN diagnosis, they may never realize how much determination & daily coping that person is capable of.

This piece reflects the AN survivor. The unique Hungarian Racka sheep depicts our unique diagnosis.

2002 Poem by Mary

2005 Poem by Jilliann

My day job is painting large, outdoor murals with my daughter. This mural is all about nourishment. Being the portal to a roof top community garden, the association with food is obvious. But we recognized that the soul needs nourishment, our emotions need to be fed in positive ways, what is sapped from us just through daily living needs replenishing…this would require a good dose of inspiring beauty: art as nourishment.
The entranceway is designed as a portal, a fantasy transition from the ordinary to the fanciful. To have our passage bear fruit, we often need to let go of what was, to allow for what may be. The AN, and the resulting SSD, robbed me of the ability to be the kind of musician I was, a performing percussionist, who also blew the shofar at my synagogue. But the letting go, sometimes forced on us, allows us to focus on what is behind the particular form of doing, to uncover what is the essence of our being. I now have a ministry in hospice care, sharing songs intimately with our patients and families…totally unexpected and both gratifying, and humbling.
All doorways are like this, we go from what we know to what awaits. The poet Rumi says it well, as he concludes in his poem, The Guest House: “Be grateful for whoever (whatever) comes because each has been sent as a guide from beyond.”
Finished mural: FOOD ROOF, my partner-daughter is in the doorway celebrating. The interior, except the roof, is a UHaul, self storage facility.

My day job is painting large, outdoor murals with my daughter. This mural is all about nourishment. Being the portal to a roof top community garden, the association with food is obvious. But we recognized that the soul needs nourishment, our emotions need to be fed in positive ways, what is sapped from us just through daily living needs replenishing…this would require a good dose of inspiring beauty: art as nourishment.
The entranceway is designed as a portal, a fantasy transition from the ordinary to the fanciful. To have our passage bear fruit, we often need to let go of what was, to allow for what may be. The AN, and the resulting SSD, robbed me of the ability to be the kind of musician I was, a performing percussionist, who also blew the shofar at my synagogue. But the letting go, sometimes forced on us, allows us to focus on what is behind the particular form of doing, to uncover what is the essence of our being. I now have a ministry in hospice care, sharing songs intimately with our patients and families…totally unexpected and both gratifying, and humbling.
All doorways are like this, we go from what we know to what awaits. The poet Rumi says it well, as he concludes in his poem, The Guest House: “Be grateful for whoever (whatever) comes because each has been sent as a guide from beyond.”
From a drone, you can see the gardens on the roof, and how much all the color enlivens this area just north of downtown St. Louis.

“Interiority" - the surgery brought my attention even deeper into the interior of my body: my brain, ear, balance mechanisms and abilities, overbearing sounds (tinnitus), and a gigantic feeling of isolation from others and the world. I had to move slowly and carefully at first as if the cellular matrix of my being was, for the first time, making me take notice. I no longer could take any movement or bodily ability for granted. All of me was on alert and highly sensitive. My handling of paint changed and still keeps changing. I don’t really know why but only know my focus is somehow different and my stamina/force has been modified. I used to paint with large paper or canvas on the floor. I no longer feel good doing this, putting my head lower than the rest of my body. I now need more rest and sleep is good for me. If I push myself too hard I get very edgy. I don’t like this anymore whereas before for maybe 40 years, I thrived on my edginess and force. The nature of all these things are morphing. So be it.

Putting into words what I feel in my head every day isn’t easy. “Normal” isn’t a word I claim. Physical, mental and neurological conditions that are not visible from the outside present new challenges I’ve never experienced. Having an AN and subsequent surgery has permanently changed my senses and impacted my activities, profession and life course. Because the symptoms are not visible it can lead to misunderstandings, false perceptions, and judgments. This art piece depicts the contrast of what others see versus how I feel. From this experience I’ve learned that when we meet others with kindness and compassion it can help them cope.