We’re excited to introduce our #SharingIsCaring campaign and you can be a part of it! We’re sharing acoustic neuroma stories all day long to offer support to the AN community and to #spreadtheword to those who haven’t heard of acoustic neuroma! Thanks to our ANAmbassadors for sharing their stories with us. Here’s how YOU can get involved:
LIKE and SHARE our posts on Facebook, Instagram and Twitter. Or share this page full of AN stories on your own social media. Use the hashtags #SharingIsCaring and #GivingTuesday and make sure to include the link to our donations page www.anausa.org/donate whenever you post.
Create a Facebook Fundraiser and tell YOUR story! Facebook is matching all donations up to $7 million. Get your fundraiser set up and tell your friends to donate early. The match starts at 8 am ET (5 am PT!!) on December 3rd. #DoubleYourDonation
#Donate! Help the ANA continue its mission, offering programs and resources to everyone affected by acoustic neuroma. Donate on #GivingTuesday. No amount is too small!
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Note: In no case does ANA endorse any commercial product, physician, surgeon, medical procedure, medical institution or its staff.
March 2017, the happiest and saddest month of my life. Birth of my son to three weeks later being diagnosed with a 2.5cm acoustic neuroma. Three months later, I was at Duke undergoing a 9 hour surgery that left me deaf on the right side, face paralyzed and the need to learn how to walk and balance myself again. I was determined to not let the tumor get the best of me and was back running my first 10k six months after surgery. Although I struggle everyday with my facial paralysis, including the inability to properly close my eye, and single-sided deafness (its ok I get some great sleep), I am alive and living my new normal. I still continue to have MRIs yearly to monitor the sliver of tumor left, but that is minor at this point. Through this scary time of my life, there was one organization that was there for me from the beginning, The Acoustic Neuroma Association. To give thanks and give back, I became a leader in our local ANA support group where I meet, inspire and support other survivors, new patients and caregivers. Please consider giving to this amazing group, who helped me through a tough time and continue to help others with the same tumor. Without them, my family, friends, coworkers, etc, I would not be where I am today. #SharingIsCaring #ANAmbassador
Ten years earlier, an audiologist told me that my hearing problem was due to Auditory Processing Disorder.
Ten years later, my wife told me that I needed to have my hearing checked again because it was getting worse.
My auditory processing problem was not the problem….
Many of you know I was the survivor of a rare type of benign brain tumor that was located in my inner ear canal adjacent to my brain. It initially affected my hearing and my balance. After receiving a shocking MRI, my doctor referred me to the Acoustic Neuroma Association. Their website had questions to print up and take with you when evaluating prospective otolaryngologists and neurosurgeons. In addition, my wife and I attended a meeting of the Eastern NC chapter and Karla Jacobus mentored me. Karla was wonderful and very informative. After determining that I did not want a brain tumor in my head, I decided to have it removed by surgery. I need to tell you that this was my first time in a hospital in FORTY years. My surgeons were wonderful and so was my hospital.
Some medical patients may have issues with a few of these: single-sided hearing loss, tinnitus caused by the hearing loss, balance issues, vertigo, facial nerve issues, cognitive issues, vision issues, and a loss of energy and muscle mass, etc. Acoustic Neuroma patients may have several of these issues BEFORE treatment and other ones like me after treatment such as synkinesis and tinnitus. There are associations that deal with individual issues such as the Hearing Loss Association of America or the Vestibular Disorders Association. The Acoustic Neuroma Association provides a venue for our members to learn about each issue through its webinars, publications and communicate with others through the online forums. In addition, it notifies members of upcoming regional and national meetings.
In 2013, one of our leaders moved away and Karla Jacobus joined the ANA board. There was a need for new leadership. Based on my experiences as a business consultant plus 4 years in Toastmaster’s International, I was willing to run meetings, arrange for venues and speakers. I wanted to do whatever I could to help those who helped me. I later told Allison, our former CEO, that volunteering for the Acoustic Neuroma Association is the most meaningful volunteering I have ever done. The association even has a means for volunteers to help newly diagnosed patients. I volunteered for a program that was initially named Willing To Talk. Newly diagnosed patients could call me for help from all over the country.
Please consider giving this association a donation so that their wonderful staff and board may continue to provide help and resources to those of us in need throughout the country. It is also important to remember that most associations cannot survive strictly on member dues.
The old me, the new me. It’s been 4 years now since I have had brain surgery to remove an acoustic neuroma. The social butterfly is no more. The high stimulation activities are kept at a minimum. You’d be surprised to know that grocery shopping is high stimulation. Now I prefer quiet and more solitude. And I’m okay with that. When I am hiking to a mountaintop, there is nothing more I’d rather be doing. I no longer hear well. At times, I really have to think to walk. At times, I really have to think to talk. And I’m okay with that. Outside of work, I rest more than I used to. I see and feel the challenges every day. And I’m okay with that, too! I am thankful for the Acoustic Neuroma Association and am now a support group leader. I also work on a community based research committee that is working on improving the lives of people with hearing loss both in the workplace and in healthcare settings. I found my new normal. And I’m okay with that! The resources and support of the ANA have been tremendous! The education, webinars and events are available to everyone. Between 3,000 and 5,000 people in the US will be diagnosed with an AN next year. If you didn’t have an opportunity to help me during my recovery, will you consider helping them? #GivingTuesday
Craig Straus was diagnosed with an acoustic neuroma after he experienced hearing loss and a loud ringing sound in one ear. MSK surgeons Samuel Selesnick and Cameron Brennan removed the non-cancerous tumor, and today, Craig is getting used to a new normal with hearing loss in his left ear. He comes back to MSK once a year for an MRI. Read his whole story here.
Yes, I have an Acoustic Neuroma, SSD and constant tinnitus but it doesn’t overshadow my daily living. My mantra is I am Healthy and Fit/65 Is the New 25. Having lost over 90 lbs and maintaining for the last year, completely off blood pressure medication, I am physically stronger and more athletic than in my whole life. I strength train with a personal trainer 3x per week, run, travel often for work and pleasure. My trainers words of advice as to the impact of fitness: "1. Exercise to the best of your ability 2. Eat mostly whole foods 3. Focus on energy, mood, sleep, digestion 4. Get better over time (stronger, more athletic, more aesthetic) 5. Stay in your own lane (don’t compare) 6. Anyone with any dysfunction, disability, regardless of gender, age, etc. can get better! " Don’t let the effects of the AN and your treatment rule your life! I chose GK almost 8 years ago with no regrets. My thread on the ANA discussion board has been read over 100,000 times and I am available as a volunteer with the ANetwork Peer Support Program.
Although this experience was extremely challenging to cope with at the time, I reflect on this journey and honour all that it taught me. I am sharing my story to provide hope to those who are going through something similar, or to those who are having a hard time moving forward after this trauma.
I think the most important thing I’ve learned was to have self compassion. To give yourself the same love and support as you would a friend who is going through a hard time. Take time to do things you enjoy, to rest and rejuvenate, to honour your feelings and cope with them in a healthy way. Personally, I started meditating and journaling two weeks after my surgery and I continue to do this every day. I have been able to become more present in my day to day life - journaling 10 things I’m grateful for each morning - small things as simple as the comfort of my bed or the smell of my coffee. This experience also gave me the opportunity to re-visit my values and to truly understand what’s important in life.
And to me, that is health and wellness, work life balance, personal growth, and connection to a higher power of my own understanding. Yours may not be the same, but I do invite you to take this opportunity to see what aspects of your life are most important, and how is this challenge helping you to see things differently.
After many many hours with a counsellor, group therapy, findings healthy ways to cope and truly facing the trauma that interrupted my beautiful life, I am able to come out on the other side and see that it came not to harm me, but to help me live an even more fulfilling life.
I have focused on aspects of my health that i can control and have lost 57lbs, transforming my entire body. I am back to nursing now, working with premature infants in the NICU. My hearing loss made me terrified that I would miss a heart murmur or a crackle in a neonates chest. But, I’ve learned that I can lean on others for support, and what I lack in my hearing, I make up for in compassion. And in many ways, losing my hearing has helped me become a better listener, more focused and more understanding to ones struggle, whatever that may be.
Losing my balance has helped me live a more balanced life. And losing my hearing has helped me listen to the voice within. This may not be your season for hustling and grinding, but it is your reason to rest, restore, connect with yourself and others, and to find the beauty in the pain that you are experiencing.
Give yourself time.
It should be said that the decision regarding treatment options is highly personal. It depends on life circumstances, stage of life, personal predilections, risk averseness, tolerance for uncertainty, and whatever else may be in the mix for each of us. There is no right or wrong answer.
I had surgery on December 20, 2018. It went well. I retained a significant amount of hearing in the affected ear, and have been able to remain employed in my chosen profession. I still have my puppy. However, my recovery has not always been easy. As is true for most, if not all, people who have their balance nerves severed, walking was a huge struggle for a time. A strong wind could cause me to lose my balance. My brain interpreted shadows as three-dimensional objects that I tripped over. I felt nauseated and uncomfortable after walking short distances. I didn’t drive for almost three months; turning my head to the left or right quickly brought on waves of intense dizziness. Fortunately, though, I gradually regained much of my balance, and with it, my ability to walk, exercise and drive. Vestibular rehabilitation therapy helped enormously.
The surgery has had some lingering effects. While my balance has recovered sufficiently to enable me to do most of the things that I did pre-surgery, my perceptual sense of myself in space is different. Things bounce around more, and don’t seem as solid or steady. When I’m under stress, ill, or sleep-deprived, vestibular issues sometimes resurface. I can’t work on the computer for more than a few hours before feeling some vestibular stress. I have some hearing loss in my affected ear. My ability to concentrate for long periods is still diminished, although it has improved significantly. Fortunately, these accommodations are manageable, and I feel that I’ve been very lucky, all things considered. Moreover, while I may not have “signed up” for an acoustic neuroma given the choice, it does have a way of rearranging one’s priorities for the better.
A short note of thanks to the Acoustic Neuroma Association (ANA). I wish I had discovered this extremely valuable resource earlier on in my AN journey (and I am very grateful for having found it post-treatment). The ANA has amassed a wealth of information about acoustic neuromas and the different treatment options available. It maintains a roster of mentors (of which I am one) who are happy to speak with newly-diagnosed patients attempting to sort out their own AN journeys. Its members form a wide community of kind and caring people with whom to both provide and find support, which has been very helpful to me. The ANA sponsors educational seminars, conferences and support groups as well. My heartfelt thanks to ANA members and staff.
I was diagnosed with an AN in January of 2018, had surgery in March of 2018, got pregnant about 3 weeks after surgery, and had Ricky in December of 2018. What a crazy year! My husband and I had been trying to get pregnant in the fall before my diagnosis but were unable. We were going to wait until the fall of 2018 to try to get pregnant again to give my body time to heal from the surgery but God had a different plan. We had 3 girls and we finally got our boy!
I can't tell you how valuable and helpful the ANetwork has been for me. When I was first diagnosed with and AN, the ANA was one of the first places that I went for information and I loved the packet of information that was sent to me. I have joined the support group near me and it is really nice being able to talk to people who are going through the same things as I am. I want to share my experience with other people who I could possibly help. The ANetwork was there for me and I want to give back.
I have facial numbness on the right side of face and half of tongue. It started this year in May. After going to dentist and oral surgeon I finally got send to a neurologist who ordered mri. I got my diagnosis on the 20 August , a 2cm acoustic neuroma. My hearing is normal and my balance is reduced by 50% on my right side which is not bad because my other side I guess is doing the work. I decided to go with radiation (SRS), which I had done on 15 November. Just one time treatment - now hopefully we stopped the growth from compressing on other nerves. New life, new me begins!
Our meeting went well - had it in one of the hospital's new meeting rooms - we had several "new" people to the group, that input a wealth of information for everyone. We even had a twenty one year old young lady that was just diagnosed attend, she as most of us were when we first found out - an emotional wreck - but with all the understanding and "love" in the room, I think we, as a group, helped her more than even she could have known, or anticipated when she first walked through that door. And that is why these meetings are so important, and the reason why I volunteer.
Eight years ago, I learned of my Acoustic Neuroma. It took months to accept the hearing in one ear was gone by the time of diagnosis. I had no idea. Making the decision to operate was one of the most terrifying choices I’ve had to face. It was my precious preschooler that gave me the strength to move forward with surgery. I wanted the best chance to see her grow for years to come.
In short, recovery was exhausting the first year, when my energy was low all too often. Adjusting to hearing loss, and balance challenges, while trying to maintain my active lifestyle overwhelmed me. Then, facing House Grade 6 facial paralysis tested my patience for three years. It was hard to identify with who I was most days, and I became a stranger in my own body. On multiple levels, communication was a daunting task at best.
Looking back, I’m thankful for what I’ve learned about myself, and life, through what was a difficult journey many days. In the scheme of things, nearly a decade later, it is only a small portion of my entire life’s story, but a very important one to share.
Never has such vulnerability unveiled a greater human side of myself. My recovery exposed pieces of me which I did not know existed, and has made me a better person. I am more resilient than I ever knew possible. I am able to embrace life’s uncomfortableness, while continuing to move forward. I make time each day to appreciate the smallest sights, sounds, and human connections that make experiences invigorating. I understand now that it wasn’t until I faced profound adversity, and moved through the hardest of those times, that I really learned what it means to live, and for that I am truly grateful.
Serving as a volunteer for the Acoustic Neuroma Association, as a support group lead in Dallas/Fort Worth, Texas, is one way I choose to give back. The Association’s resources were invaluable during my time of need. Helping to educate new patients as they venture down this life path, facing their unknowns, is important to me. I want them to know they are not alone in what can be a petrifying and uncertain time.
One day you wake up with a ringing in your ear, and it doesn’t go away. Ok, you think, I now have tinnitus in my left ear. As time went on, I lost hearing in that ear. At the time, I thought, No big deal, that will happen. Years later I began to lose feeling in the left front side of my head. OK, this is a problem, I should probably get this checked out. I went to my doctor, who referred me to a neurologist and an MRI. The real problem gets to be, while waiting for appointments, I became dizzy all the time, and I mean, all the time. The MRI diagnosis was a schwannoma; an acoustic neuroma, which is a benign (thank God) growth on the hearing nerve (cochlear nerve). The neurologist, and the ENT doctor both agreed that surgery was necessary.
I was told that the surgery would take about 8 hours. What I didn’t realize at the time? This was brain surgery. A bit of a panic, but it needed to be done. The day of surgery, May 15th, 2018, everything went as planned. However, once the Docs got in there they found a lot more than the MRI had shown. Multiple tumors and the main tumor was much larger than they originally thought, one of the biggest my neurosurgeon had ever seen. Instead of 8 hours, the surgery went 13 hours. They sent my family home since I wasn’t out of surgery until well after midnight. I thought that even though it was much more than I’d anticipated, I’d be back to normal very soon. I didn’t realize that half of my face that was numb, was now paralyzed. Eating and drinking was now problematic. Wearing my contacts was no longer an option because I couldn’t blink.
Recovery took much longer than expected, but recovery happens. While I still can’t smile fully, I can eat and drink normally, I can wear contacts again, and most importantly, the dizziness is gone. The nerve will heal itself in time. Trust me on this, you may be uncertain, or scared, of what’s in front of you. You WILL get through it; you will, on your own terms, recover, and you will be well again. As you gather your support group and your recovery plan don’t forget the most important things you’ll need; time and patience.
I was diagnosed with AN in May of 2017. I was by myself at the Ear Nose and Throat doctor when I got the news. I thought I was having some minor hearing loss or infection because of the tinnitus, and when they said the word tumor I went into a mental coma. It was like their lips where moving but I was so devastated that I wasn't listening. I sat in my car and cried for an hour before leaving the parking lot. My husband and I went to see a neurosurgeon who specialized in the field and he did I had a very large AN tumor and it needed removal right away as it was the size of a golf ball and pressing on my brain stem. It was a 13-hour surgery of which they were able to remove it completely by going through and removing all of my left inner ear. My facial nerve was stuck between the tumor and my brain stem so they had to peel it off.
The left side of my face drooped for many months. I couldn't brush my teeth, water just ran down my face. I had to learn to walk, talk, eat, and live all over again, and it was hell. My imbalance was horrible along with dizziness, over sensitivity, irritability, headaches, and insomnia.
I went to physical therapy and my balance improved but never has come back completely. I get pain in my brain from bone dust that is permanent. Then after all that, I couldn't sleep one night and got up to go to my recliner and I took a hard fall on our tile floor due to groggy imbalance. I hit my left side hard including my head. My husband had to take me to the ER where they checked everything.
I checked out ok but started having pain in my whole body, pins and needles, and numbness. If I bend over my face goes numb. I also ended up back in the ER due to blood in my urine. I had gotten a bladder, UTI, and Kidney infection and didn't feel any symptoms of it. I then was diagnosed with permanent peripheral neuropathy, autonomic neuropathy, and post-surgical PTSD. I still suffer greatly today. I was denied disability due to not having enough credits, had to quit my job, and file for bankruptcy. I’m on seven medications and now I mostly sleep, or on a good day make art. Art is my therapy now. My AN story is not a very happy one, but I try to stay grateful that I have my life and I try to make the best of my situation as all my doctors and specialist say there is nothing left to be done except adapt. I have my nights when I just hurt, cry, and feel so drunken wonkey, but I try to keep my chin up. But I will be honest, sometimes it's very hard.