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When I had to quit running, cycling and swimming because of balance/nausea issues caused by my large (5 cm) acoustic neuroma, the one thing I missed the most was swimming in a local lake with my husband and friend to train for our open water swims. Four months from my surgery date I completed a mile and a half swim and was SO happy to be out seeing herons catch fish, kayakers and early morning fishermen. I smiled a lot that day and didn't even care if my smile was still a bit crooked!
April 10 2023 was the 10-year ANniversary of my AN surgery! Quick summary of my journey: I was diagnosed with my 1.4cm AN in Nov 2012, when I was 27 years old. I had sudden hearing loss in my right ear, about 10% loss and tinnitus. I flew cross-country from Washington, DC to have Middle Fossa surgery with Dr. Schwartz and Dr. Friedman at House Ear Clinic in Los Angeles, CA (they have since moved to UCSD). They removed 100% of my tumor and were able to preserve my hearing (still only have 10% loss) and I had no balance or facial issues whatsoever. I stayed in the hospital for 4 days, flew home 10 days post-op, and was back to work in 6 weeks full-time! I have since had 2 daughters who are now 6 and 3.5 years old. And I have lived my life normally ever since – I play soccer 2-3 times a week, do CrossFit, and even took up road biking after my surgery! My biggest pieces of advice: The best thing about ANs is that they normally grow slowly, so you have time to research. Research and obtain as many expert opinions as you feel comfortable, so you can make a decision that feels right for you. There are many individualized risks and factors (tumor size, location, symptoms, lifestyle, etc.), so finding a team with extensive experience with AN treatments specifically, gives you your best chance at a great outcome. Be your own advocate – only you know what is most important to you and can fight for the best care in your situation. I have continued to participate in the AN community for 10 years now as co-leader of both the Washington, DC and the Young Adult ANA support groups. It has given me great pleasure to help others, especially sharing my story to inspire others that great outcomes can happen, and there is light at the end of an AN journey that can sometimes feel scary and unknown. So, I just wanted to say thank you to all of you – we have built a great place where we can connect, inspire hope, and a great sense of community!
I was 12 years old when my AN was removed. It was rare for a child to have such a tumor. We knew I had some hearing loss on one side, but once all of that hearing was gone they began further testing. The tumor was stretching to my optic and facial nerve. The surgery was performed at Riley Hospital for Children in Indianapolis, Indiana done by the amazing Dr. Richard Miyamoto. I am now a thriving 44 year old with 4 children. 13 years ago I had a BAHA implant and have had much success. I'm so thankful for my recovery and my life!
I had my tumor removed at Inova in Va. 13 hour surgery to remove 97 percent of the tumor in March 2021. I awoke from surgery with facial paralysis and an inability to swallow. They placed a feeding tube and 13 days after surgery I was released from the hospital. Then by July the tumor had regrown. CyberKnife in August. I’m still learning new things about my post surgical self and adapting to my somewhat new way of life. This is a journey…
After having removed my tumor 2/5/2020, I had every complication in the book. CSF leak, meningitis, three shunts, eye lid implant, 4 picc lines. You name it, it happened to me. But lucky they found the infection deep in the bone and had to remove my ear canal (which was fine because I had lost the hearing anyway with the brain surgery) I had facial reanimation in September 2021 (18 hour surgery) and now I’m starting to have movement and feeling well. Everyday is a milestone.
Three months after my surgery, I went skydiving on my 40th birthday. Most dread that age, but I welcomed it like no other!
Before my Gamma Knife Radiation (October 8, 2021), I traveled by myself in my RV for 3 weeks driving 1,500 miles in Northern California. I immersed myself in the place where I feel safe, Nature. I talked with the Sierra Nevada and the Pacific Ocean looking for answers. In Yosemite, a Giant Sequoia gave me the encouragement I needed. She showed me her massive scars from fire, and whispered in my deaf ear, "It does not matter that you have this tumor in your brain, you are still beautiful, splendid, and absolutely magnificent, just like me. Never forget it". I hugged her tight. She was right!
I had Translab in September of 2020. My surgery was a success and I have recovered well. I could not have done it without the wonderful doctors at UCSD and the Acoustic Neuroma Association. I am adjusting well to my new normal by just taking it one day at a time and keeping my chin up.
8 yrs since AN was removed (Translab Oct 2012). Surfed No. Calif coast for 30 years prior AN. 70 yrs old now. After my ordeal, I couldn't walk straight nor think straight. Took about 6 months before I tried to surf and almost drowned myself. I'm still quite dizzy especially when tired, have a bad pressure in my head if I try and lift too much and of course hard of hearing. A bit difficult still but once I'm on the wave balance is good. A friend snapped this picture a few weeks ago when I was out on a bigger day that typically I'd have just watched.
I have always been clumsy all my life. About four years ago I felt like I was losing my hearing and before that I also struggled with migraines. Everything hit me so fast – literally overnight. I woke up with a horrible migraine and the following day I woke up with vertigo and ringing in my ears.
I went to the doctor and they flushed out the wax in my ears. I had ringing and no feeling. My parents suggested I get a second opinion. I had an audiogram and saw the doctor who suggested an MRI. I was in disbelief when he suggested a brain tumor. The results showed an AN on the right side and a possible one on the left, which I am watching.
I was only 42 and due to the ringing I hardly slept and I was looking for relief. I was told my best option was surgery. My recovery has been okay. I have been having a hard time with my incision but I have been recuperating.
10 years after the surgery still keeping strong! Happy to be more self aware than ever and taking care of myself!
Forty years ago today, September 3, 1980, I had my acoustic neuroma surgery. Sure wish I had known then that I would be talking about it forty years later! Some of the most rewarding times of my life were the years I served as ANA vice president during it’s formative years. Ginny Fickel Ehr was the right person at the right time. I admire her and all the folks I met during those early years. I'm happy to report that I have had a good life in the ensuing forty years and wish all of you the same.
My mantra is I am Healthy and Fit/64 Is the New 24. Having lost over 90 lbs in the last two years, completely off blood pressure medication, I am physically stronger, more athletic than in my whole life. Yes, I have AN, SSD and constant tinnitus but doesn’t factor in my daily living. I am fortunate to work out with an excellent personal trainer. His 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!
Had a left side retrosigmoid craniotomy at Inova Fairfax to remove my 2x2x2 tumor on 12/21/18, just under a month after initial diagnosis, and today 12/27/18 I came home. By far Inova is the best hospital I have ever been in, and even though I spent Christmas there, I was surrounded by my family who loved and supported me. Somehow that alone made it the best Christmas ever. It's good to be home, now we work on getting my face to work again and just healing properly.
September 11 I started my 5th straight year playing hockey. 1992 Translab, 2007 Translab (regrowth), 2011 Gamma which just had my 8 year check up and no growth. My celebration is for all those who may not see the light at the end of the tunnel. Whether its post op, pre op, family, friends, whomever, you don't have to stop living life. I celebrate for all AN Warriors.
I was 32 years old when my 2.5 cm tumor was removed. And that was 32 years ago! So I have now spent as much of my life AFTER the surgery as I had BEFORE the surgery. My first thought upon hearing the diagnosis was, "Why haven't I had children yet?" My son is now 28 years old and knows instinctively to always walk on my right side where I can hear him best. I have had a long and successful business career and people around me just know that I will tell everyone where to sit at a table so I can hear them.
2.5 years post op, a 16 hour surgery for a 5.2cm tumor & a CSF leak. Some days I can barely walk, other days I'm skateboarding again! Stay strong everybody!
I had my 3.1 cm acoustic neuroma removed via retrosigmoid surgery on my son's 21st birthday, March 16, 2017. I had just four weeks’ notice that I had a brain tumor and it had to come out right away. It was compressing my cerebellum and brain stem, causing hydrocephalus, headaches, dizziness and hearing loss on my right side. Two years later, I can say I "feel" normal. When my face is at rest, you can hardly tell that there are still some issues. I have synkinesis on my right side. I had Botox once (40 injections!) in August 2018 and will have my next Botox in April 2019. I see Jackie Diels for neuromuscular facial retraining - I can't emphasize enough to see an expert in this if you have synkinesis or some kind of palsy. There is hope. There are people who understand, it just may take a bit to find them. I know so much more now than I ever did before my surgery. I wish there were things I would have known then. But I didn't and I did the best I could. Now, I'm happy to share my story with anyone who is interested. There is life after having AN, it is sometimes just a slightly different one. I work full time and go about my life generally as I have previously, avoiding some activities that might be harder on my balance. Be positive. Seek assistance. Give yourself time. Have patience with yourself and others. Live life to the fullest. I wish you all the best wherever you are on your journey!
I was training for a 1/2 marathon when my AN was discovered (my first symptom was dizziness). I had surgery in August of 2012 (the tumor could not be completely removed). 8 weeks after surgery I ran a 5k and 9 months later was able to run that 1/2 marathon. I had cyberknife in October of 2013 (my tumor decided to grow again at a fast pace). 7 months after that I completed a Sprint triathlon taking 2nd place in my age group. I have gone on to run another 1/2 marathon and many 5K races. I don't let my "friend" - (as I refer to my AN) stop me. Remember - you can do anything!
"It's naht a toomah!" -- Arnold Schwarzenegger, "Kindergarten Cop (1990)" OK, actually it was, but I'm all better now. Many of you know that I am a survivor of a type of brain tumor called an acoustic neuroma which was the cause of many challenges including re-learning how to walk/balance & my permanent deafness in one ear amongst other things. The offending 2.9-cm tumor was surgically removed via brain surgery in 2016 and so far so good on the recovery! To give thanks and to pay it forward for the gift of life I got back, I volunteer with the Acoustic Neuroma Association working toward making it the leading source of inspiration, resources, and support for both new and long-time patients & caregivers. I can tell you first-hand both the staff and the board are COMPLETELY singular and united in this mission and all have been doing fabulous work in this endeavor! As I'm lucky enough to reach another year in my life, please consider giving this amazing group a gift to help them help so many others like me! Mahalo nui loa!