The 7th annual ANAwareness Week takes place from Sunday May 5 through Saturday May 11. Join the AN community and supporters to raise knowledge and understanding of acoustic neuroma across the world wide web. We encourage supporters to get involved by:
- Sharing your acoustic neuroma story on Facebook, Instagram, or Twitter
- Tag us during May 5-11, 2019 for a chance to have your story shared on ANA’s social media
- #ANAwarenessWeek #ANWarrior #ANStory #SoundOff4AN
- Re-sharing facts about acoustic neuroma from ANA’s social media platforms
- During ANAwareness Week, ANA will post acoustic neuroma facts on Facebook, Twitter, and Instagram that you can share with your social media audiences
- Purchasing ANAwareness Week merchandise (available in April)
- Take a selfie in your ANAwareness Week shirt and tag us during May 5-11, 2019 for a chance to have your picture shared on ANA’s social media
- #ANAwarenessWeek #ANWarrior #ANSelfie #SoundOff4AN
- Hosting a Facebook fundraiser during the week
- Set a minimum goal of $100 and get your friends involved with ANA
Submit your milestone/anniversary and upload a photo or video: MILESTONE FORM
Note: In no case does ANA endorse any commercial product, physician, surgeon, medical procedure, medical institution or its staff.
At age 33 and mom to two small children, I learned I had a 2.5cm AN. I had successful Translab surgery in May 2017. Unfortunately, I awoke from surgery with facial paralysis and struggled to get back on my feet without help. I wanted to be strong and healthy and get back to what I loved - running. I kept a positive attitude (even though there were plenty of bad days), had an amazing support system and set a goal to run my first race six months post-surgery. I completed a 10K and raised $3,000.00 for ANA!
At 20 years old, finding out I had a tumor in my brain was more than unsettling. I was a junior in college and was no way strong enough to handle this, or so I thought. I was having symptoms that doctors say "Are not symptoms of the tumor you have". I was going completely blind in class for 10 minutes at a time and losing my memory, and more. It was time to get this thing out of my head! I convinced my doctors to do the surgery and in December of 2015 I had it removed. I was told I wouldn't be going back to school but here I am; a college graduate, engaged, and a first year teacher!
I am a mother of two daughters 16 and 13 and in November 2014 was diagnosed with a 5.1cm AN. I was in China for an assignment and had to rush back home. My surgery took 13 hours (at Johns Hopkins), but I woke up with facial paralysis. Have had facial regeneration surgeries after that, my eye has healed and my face has gained symmetry to a large extent. I maintained a positive attitude and never gave up on myself. My goal this year is to learn piano and run a marathon.
Today it has been 4 months since my Translab surgery at the University of Minnesota. I am 59 years old and had never had any type of surgery. With the support of friends and family I was surrounded by Love and after making the decision that Translab was the best route for my acoustic neroma I was then able to plan and keep a positive attitude knowing this was the right decision and knowing that the tumor would be gone. One month after surgery I was attending my daughter's Christmas concert and enjoying going out. I recovered without much pain and no complications.
I was 29 when I learned I had an acoustic neuroma vestibular shwannoma. I had 3 young children 3, 8, and 9 years old and a husband. My tumor had taken up the entire acoustic space and was growing toward my brainstem. I had to have my hearing nerve and balance nerve severed to remove the tumor. My recovery was hard, but a success. I am so thankful for the skilled hands and for God’s and my family’s help to pull through this hard time.
At age 39 and the mother of 3 kids, I was diagnosed with a 5cm AN. I had Translab surgery, lasting 10 hours in February 2017. I woke up with facial paralysis and was diagnosed with dysphasia, a swallowing problem. Through my journey I had many positive people around me. Going through many struggles and lots of bad days, I learned to become strong because God has given me a second life. I am achieving successfully all my struggles with therapy and doctors. I still have complications, with my walking and double vision in the right eye. However, it’s getting better as time goes by. I’m staying strong and pursuing the best!
On March 16, 2017 at the age of 50, I had a 3.1 cm acoustic neuroma removed via retrosigmoid. This also happened to be my son's 21st birthday. I had five weeks to absorb that I had an AN, it was pressing on my cerebellum and brain stem and causing hydrocephalus on my brain, causing daily headaches. I had an 11 hour surgery, seven day hospital stay and 12 day rehab hospital stay before going home. I had facial paralysis and still do today, but it has been improving gradually. I remain optimistic and have a positive attitude, trying to lead by example in how I handle this whole situation.
It has been 20 years since my Translab surgery for my AN and 10 years since Gamma Knife for a recurrence. What milestones! During that time, I have hiked up mountains, repelled down a cliff, ran half marathons, and raised two girls. Call me adventurous? No, I am just living life to its fullest and my AN is on the journey with me.
In 1989 I had AN surgery that left me with horrible headaches, severe hearing loss, demanding fatigue and a terrible lack of balance. In early 2017, I decided to become a cyclist. I started training and also took Pilates classes. At 73 years old, I recently accomplished the greatest physical challenge of my life - I biked up Greenville’s Paris Mountain, with an ascent of 2.2 miles of incline. It was an incredible day for me! My friends and I went up 2100 feet, riding a total of 26 miles. When I think back to how far I’ve come since my surgery 28 years ago, I feel so proud. Find your passion and never stop moving!
I was 62 when diagnosed with a 4.5 cm AN, 8 years ago. I found a very AN-experienced neurosurgeon to perform my AN surgery. The surgery went perfectly and I was discharged in five days, post-op. No facial paralysis was evident. My neurosurgeon supervised my follow-up with 27 low-dose radiation treatments administered by a radiologist. I also worked to regain as much of sense of balance as possible. A few months later I was discharged by my neurosurgeon who stated that my recovery was in the 'top 5%' of his AN surgery patients. Grateful for my outcome, I was very active in ANA.
Just 6 months after I had my surgery to remove my Acoustic Neuroma, I was back on the ski hill. When I was diagnosed with my AN and preparing for surgery, I asked my physical therapist how badly my balance would be affected. My husband knew why I was asking, I was scared I wouldn't be able to ski again. I grew up on the snow and I skied better than I walked so the thought of not skiing was overwhelming. My first time back on the snow was such a huge victory and each time I get to put on my skis I thank God that I can still ski. Each day on the hill is a celebration!!!!
After my tumor removal in Sept of 2009, I retained some nerve damage to my lacrimal gland and had challenges with balance. A nurse friend of mine started jogging with me 2 years later. As the seasons changed and the sunrises came later, I really struggled to run but in that time my brain healed significantly. I regained my balance. Today I am living my dream of getting back into healthcare. Eastern Idaho Regional Medical Center awarded me the very first ever Spirit of EIRMC award. It meant so much to me to overcome that challenge and be secretly nominated for an award. Miracle!
On April 6, 1988 I underwent a 15 hour surgery at Mass General to remove a 4 cm acoustic neuroma. I was just married on November 7, 1987 and on December 24, 1987 the left side of my face started to go numb. Thinking it was nothing I did nothing until March 1988 when I could not feel the left side of my face. That’s when I had an MRI and my journey started. After all these years I looked into a cros hearing aid and love them. I can hear out of my left ear and it’s great. I am grateful I did so well and my only residual is dry eye (which has been tolerable) and deafness in my left ear.
I am a mother of two and retired from the navy. I had a 3.2 cm a.n. partially removed in July of 16 and 6 weeks of radiation a year ago. I still struggle with a lot of things and have had a really hard time dealing with my tumor, but it has pushed me harder to become a better version of me. So my milestone is strange but means a lot to me. I have finally gotten to the point where I have accepted that I have a tumor and I love the person it has made me become. I know it sounds different, but I am different and I am me and I am a survivor like you!
March 3rd, 2018 was my 3 year surgery ANniversary. I struggled greatly in my recovery, having to stay off work for three months and severely limit my physical activity due to an internal CSF leak. Since that time, I have treated each ANniversary as an opportunity to push myself physically, to celebrate the day by remembering that I have the ability to do whatever I set my mind to now. This year that means training for my first Strongman competition. In the weeks leading up to this 3rd ANniversary, I carried 505 lbs on my back, and I celebrated the ANniversary by squatting 355 lbs, a new PR!
I was sitting in my classroom and it seemed like the world stopped moving for a moment when I learned of my diagnosis. I couldn't believe that at the age of 23 I had a 4.9 cm tumor in my brain. I had to put on a brave face and tell my students that I would be back after winter break. I had my surgery on December 5, 2014. After a 16 hour-long surgery, my amazing doctor successfully removed most of the tumor. Since then, I have dealt with partial facial paralysis, relearning to walk, and even speak. I've learned your diagnosis does not define you, you define your diagnosis.
I was diagnosed with a 3cm AN in March of 2015. At the time I had one 2 year-old daughter. I had translabyrinthine surgery in May of 2015. They successfully removed the entire tumor. After giving my body time to heal and recover, I felt truly healthy and in my new normal when I was able to have a healthy pregnancy and a beautiful new baby girl. Ivy joined the family in fall of 2017, and she is a very joyful milestone.
I had my surgery on February 8th. I have worked hard recovering and going to rehab. Although I still have right sided paralysis, I am returning to work on April 30th. The support I have gotten from friends and co-workers has been amazing! This picture was taken the day of my surgery at Yale New Haven Hospital.
Four years after my retrosigmoid craniotomy to remove a 2.7cm AN, I celebrated by going snowshoeing for the very first time. Up until then, my balance and endurance would not have allowed me to keep up with those more experienced (but tame) friends. Being in that environment with the cold and the beautiful trees and the snow is something to experience in person. I learned it's ok to use walking sticks, it's ok to be the slowest one, and it's ok to ask for help. I remain grateful for all of life's opportunities, thanks to my AN experience.
I had AN surgery September, 2015 via the Retrosigmoid approach. I'm deaf in my left ear, but still carrying on. Keep on keeping on! I'm a USPS letter carrier of 17 yrs!!!
After being diagnosed in April 2017 and having surgery June 19, 2017, I have embraced my new normal. Being a single parent to a 5-year-old has taught me that having compromised hearing and compromised balance does not equate to a compromised life. Almost a year after surgery and I sincerely say life is good. I have learned lessons I didn't even know I needed to learn, and forged ahead with a renewed zest for life.
Celebrating one week ANniversary for removal of 2cm AN at Cleveland Clinic using Translab microsurgery approach. Experienced AN warrior since Jan 2012 to include Gamma Knife surgery at Cleveland Clinic in August 2013.
They thought I would never be able to walk independently again. Just finished my first 5k in less than 60 minutes!
I had acoustic neuroma surgery on 11/30/17 to remove a 4cm tumor. Five months later, I achieved a personal record on my time for a 1,000 meter sprint on the rowing machine - an assessment we have to do every spring. I beat my time from last year by over two seconds! This is a significant milestone for me because I feel like I have my spunk back, and have fully resumed work and competitive rowing. While I continue to adjust to one-sided hearing and experience occasional dizziness and fatigue, I feel great! I'm very grateful for Dr. Manuel Ferreira and the ANA!
Hi! My name is Jennifer Miller and I am celebrating my 10 year post-op AN anniversary this May! I am happy, healthy and completely medicine free! Being diagnosed at such a young age completely changed my life but I wouldn't be the person I am today if I didn't go through all I had. I still have facial paralysis and 100% deafness in my right ear but I have used these "malfunctions" to share my story with others and help them know the darker days will get better. I am so proud to be an AN Warrior and have met so many other amazing AN fighters! You guys are awesome and keep me going each day!
I went to my doctor for a buzzing in my right ear. A lengthy battery of sometimes painful tests revealed a 6 mm acoustic neuroma and led to a 6-hour operation. While I lost my hearing in my right ear, and have had some life-long facial paralysis on the right side of my face, the surgery was successful and I have not suffered from the other more serious side effects of AN, quite an achievement in those long-ago days. I have enjoyed an active and normal life, am now retired from a successful career, and have a wonderful family. I have been very lucky and wish the best for other survivors.
Oct. 17, 2017, I had a near-total removal of a 3cm AN. My family and friends were amazing throughout this journey. I'm still living life - I took an amazing trip to Hawaii with my husband and son. Struggles have not escaped me - deafness in one ear, dry eye and closure problems, PT for neck issues, and I’m walking nearly every day to improve my balance. My biggest struggle is with daily headaches and debilitating pain. AN Awareness week is significant to me as I just received my first nerve block for occipital neuralgia and I have my first post-op MRI this week. Fingers crossed!
Approaching 5 month recovery 5/10 after Retrosigmoid Craniotomy removing my AN. 18 years suffered dizziness, 2015 started w/balance problems, 2nd MRI in 2017 confirmed the brain tumor. Returned to work 7 weeks & most significant milestone - riding bike 5 miles @ 13 weeks. Lost my hearing & still have balance problems/dizziness/fatigue/pain. Forever grateful for my family, friends, coworkers, employer & the AN Association! LOVE LIFE to its fullest, be grateful for each NEW beautiful day! "Life doesn't get easier or more forgiving, we get stronger and more RESILIENT" - Steve Maraboli.
I had Translab surgery to remove my AN on August 31, 2016, and was back on my bike October 9th! Blessings to all of my fellow Acoustic Neuroma warriors. Never give up hope!
I was 33 years old, married with three daughters, 8 years, 6 years, and 4 years old. Now I am a happy Grandmother sharing 6 Grandchildren with my husband. God is Good.
9 weeks post-op and just ran for the first time! When I first woke up from surgery, I had some pretty bad complications with vision. I didn’t know if I would ever see straight, let alone walk again. An avid CrossFit athlete, this was clearly devastating. With some incredible coaches, physical and vestibular therapy, I have worked my way back to clear sight, walking and now running again! Every day is a new milestone and a huge gift!
The Force was with me on May 4th: 6 Year ANniversary... Pittsburgh's Steel Challenge - 5K (Saturday, May 5th) and Half Marathon (Sunday, May 6th) - Mission Accomplished...
I was diagnosed with a small AN at age 52 in 2016. I was scheduled for AN surgery, then it was put on hold to remove a cancerous thyroid nodule. On 3/28/17, I had Middle Fossa surgery. The balance nerve was removed so I woke up with vision issues, no balance, SSD, and minor facial paralysis. Recovery went well with vestibular therapy, walking and personal training. A year later and I am back in the gym 5 times a week doing kickboxing and bootcamp classes. "A strong person is the one who knows how to be quiet, shed a tear for a moment, and then picks up their gloves and fights again."
I am 4.5 months post op after Middle Fossa Surgery. Back to work part time at 3 weeks post op and have been exercising since 8 weeks post op! /p
One year after surgery, although I suffered total hearing loss in my left ear, surgery was successful. My follow up MRI showed no residual tumor remaining. I made it!
I am just happy that I can now control the muscle and nerve that was transplanted into my left cheek by clenching my jaw. Although I do still technically have paralysis, I no longer have the droop. I am going to take another step of the reanimation come June to go back in and shave down the muscle some.
This summer will mark my 31st year post surgery! Then, I was 26 and in the middle of grad school. Some new challenges were added certainly (one-sided deafness, facial paralysis, balance issues - you know the drill), some self-realization alterations had to be made, but it's been a very fulfilling three decades. Now retired, the fulfilling part continues with much love and thanks to husband, family, and friends!
I had my surgery that removed my tumor which was a meningioma. My hearing has improved tremendously, which is critical for my job.
My 2cm AN was an 'incidental finding' from a persistent sore throat. I went into full throttle research mode and got over 12 opinions! My husband and I made spreadsheets, read the latest medical journal papers and at night, held each other tightly. Landed on a superbly experienced, responsive and warm demeanor-ed team at UC San Diego. Perfect outcome- saved hearing(!), face & did a total resection. Healing rapidly, kissing my 3yo daughter's potbelly and exploring the new movement pathways available to me. The body is a resilient ecosystem and fiercely regenerative in it's capacity for healing.
Please help ANA continue to provide these valuable programs.
DONATE TO SUPPORT PATIENT EVENTS
ANA Patient Education Event Hosted by
University of Cincinnati Gardner Neuroscience Institute at UC Health
May 11, 2019
ANA Patient Education Event Hosted by
Stanford University Medical Center, Departments of
Neurosurgery and Otolaryngology
August 24, 2019
The Great Brain Freeze
The Great Brain Freeze is the Acoustic Neuroma Association's signature winter fundraising theme encouraging friends, family and members of your local community to join you in taking an icy plunge to raise awareness and funds for the Acoustic Neuroma Association.
If brraving an arctic dip is not your cup of tea or your winter weather is always sunny, consider a pool party, ice cream social or group snowball fight. The possibilities to keep it cool for your fundraising are endless!
The Great Brain Freeze is the brainchild of Neil Donnenfeld, ANA Vice-President and AN patient. Neil's inaugural plunge into the chilly Atlantic Ocean took place on February 4, 2018 at Fisherman's Beach in Swampscott Massachusetts. Watch his story:
To get started on Your Great Brain Freeze:
- Talk with your doctor to ensure you can participate in this type of activity.
- Review our Event Tips and Guidelines and complete and return the Event Information Submission Form.
- Download our helpful templates and The Great Brain Freeze logo (1-color and 2-color formats) to promote your event.