I had a 2.7cm AN removed by Dr Prevedello and Dr Adunka from OSU Wexner center back in September. They are absolutely amazing.
I just had surgery again today with Dr Adunka to have a Bonebridge hearing device installed.
Thank you for all you've done for us AN warriors! You've been such an asset. Everyone has a different story, but we are all on this journey together! Still watching and waiting …….with friends.
It’s been 5 years since diagnosed and I’m able to simply monitor….
That's me, Bonny from Baltimore, doing a plank on my 64th birthday, 4 yrs post op and going strong! Surgery 2/8/22 I had an AN removed by Dr. Prevedello and Dr. Adunka in January. Had my first post op scan this week and I'm tumor free! I'm currently working with Dr. Adunka and Dr. Hiss to hopefully have a successful cochlear implant surgery in the near future. Facial paralysis is slowly but surely improving and I've recently "graduated" from vestibular therapy. I cannot speak highly enough of these doctors and the care they offer along with everyone at Ohio State Wexner Medical Center. Thanks for doing this! It will no doubt build solidarity and pride that each of us got through this, more or less in one piece. Diagnosed in 2020.
Keeping the Faith
Hello, I'm Julie and had Middle Fossa surgery on 12/13/2019 in Iowa City, Iowa.
My recovery was very difficult. Extreme dizziness, double vision, nausea, had to relearn to walk and eat/swallow. My physical therapist didn't know what to do with me. I educated myself and worked HARD to get my life back. I still have numbness from my facial palsy and I still can't taste or cry. I still occasionally have dizziness and balance issues and speech issues. But I'm here and pushing myself every chance I can!
I had a 3.7cm tumor removed at John’s Hopkins in 2018. These photos were taken exactly one year apart. One year after surgery, I ran my 4th marathon. I had retrosigmoid surgery at Duke 13 weeks ago. I am so grateful they successfully removed the entire tumor and completely preserved my facial nerve. Healing is definitely a journey indeed. It’s been 15 months since my surgery and I have learned so much. I am grateful for the path I have walked through and also for being able to give this testimony. I also learned how brave and resilient I am, and how, hopefully, that can become a life example for my children. I am eternally grateful to my surgeons and to my husband: my hero. Be strong, warriors! And I hope you find your own way to make the best of this. The biggest lesson I have learned/am learning is patience. Patience with my recovery/healing and patience with medicine and my doctors. I was 22 when I found out I had an AN and also 22 when I had it removed. I want people to know that not just people in their 40s or older get ANs! I have recovered well and been able to travel much since my surgery. (pic is me in New Orleans)
Thanks for advocating for everyone who is affected by ANs!!! Celebrating three years post-surgery in September and what a journey I’ve been on since diagnosed and treated. I have come a long way from having facial paralysis and difficulty walking unassisted. I could not have done it without my great care team, family, and ANA community. Thank you to the AN warriors who bravely share your stories, hardships, and milestones. AN-diagnosis- November 2021
Retrostigmoid Surgery- January 2022
4 months post op May 10th,2022
I had Middle Fossa April 7, 2021. Here is a photo of me 13 months later (May 14, 2021) after I finished a strenuous hike in Bryce Canyon. One year ANniversary middle fossa with Dr. Prevedello and Dr. Adunka at OSU on 4/13/22. Photo is 4/16/22. Through my journey still able to pursue my dream of becoming an Emergency Medicine RN! 1.5 year after a 6cm AN tumor resection!! I was 18 when I was diagnosed with an acoustic neuroma. Celebrating 10 years post-op following a middle cranial fossa surgery for a 5mm acoustic neuroma at The House Clinic. I have learned to be patient with my balance and proud of how well my body has been able to adapt. 7/31/2018 surgery
To now (June 2021)
I was 25 years old and had just gotten married when I was diagnosed. I am now 6 months post-op and back rock climbing! God is good! We only get one life, make the most of it. Two years post op Gamma knife radiation on 1/18 at Ohio State Wexner medical center. Translab surgery @ MUSC on 1.2.2019 for 3.5cm tumor. Doing good! I just celebrated 5 years post AN Middle Fossa surgery! I still have balance issues and I am SSD, but overall recovery was great. I always look forward to ANAwareness week and helping to spread awareness. My grandson loves his new “I love my AN Warrior” t-shirt. AN surgery 18 April 2022 and my recovery is going well - albeit some temporary facial paralysis, metallic taste, balance/vertigo issues, and my brain still figuring out how to process moving things it sees. I’m tumor free and grateful to take time off work for recovery and get back to my full, active life! I’m a very active occupational therapist who has completed several marathons, half Ironman triathlons and bike toured the world. In 2019 I had sudden dizziness, very loud tinnitus and was falling several times a day. An MRI revealed a small acoustic neuroma. The surgeons here in Portland said the tumor was not causing my symptoms and that I would be disabled. I was so motion sick that I lost 20 pounds. After hours of research and invaluable information from the Acoustic Neuroma Association, I sought a second opinion in Seattle. I had a mid fossa surgery and the tumor was successfully removed. I am now back to swimming, running and biking. The recovery was hard, as I had to learn how to walk, run, bike and swim again. I still have slight balance deficits and vestibular ocular reflex deficits but I am so much better! Thank you so much for the patient booklet as it helped me so much. My hope is that physicians and surgeons will be more educated about this rare tumor so others don’t have to go through what I did. Last AN surgery 2 years ago. Total of 2 surgeries to remove the tumor and one to put a shunt in. I had translab surgery on March 2nd, 2022 at Kaiser in San Diego, CA. Here is a photo during my recovery journey. Thank you for everything you do! It's a great organization ❤️ My AN was quite a wake-up call, but I am enjoying most of what I did before. This picture is me at a track day at The Ridge in western Washington. I'm also a motorcycle instructor! I was diagnosed with an AN in June 2019. I went to my PCP because I was feeling off with some dizziness. She sent me for tons of tests including bloodwork and cardiac work up which all came back normal. I asked about getting an MRI of my brain and she didn’t think I needed one because I was so young. I persisted and found out I had a 2mm AN on my right side. I was on watch and wait for 2.5 years but my vertigo became worse and was affecting my quality of life. My doctor, husband and I decided it was time to have surgery. I went for a few other opinions and decided to have middle fossa surgery at UCSD on March 2022. The surgery was a success. The tumor was fully removed and my facial nerve was left intact. Unfortunately I lost my hearing in my right ear. I am now doing vestibular PT, walking everyday and adjusting to my new normal with SSD. I encourage everyone to be your own health advocate. If you feel something is wrong don’t wait or ignore symptoms. Don’t let your doctor say you are fine if you think something is off. Stay well and strong all my fellow AN warriors! I am a little over 5 weeks post op. Feeling more alive every day! I’ve learned that a robe offers a constant hug & my dog, Lucy, is my favorite form of therapy!
Three years on watch & wait suffering with intense tinnitus, headaches, balance/vertigo and chronic fatigue. I’m overwhelmed, exhausted, and often excluded, but still smiling & staying positive because I have to stay strong!
AN Removal April 2019 Hello, my name is Hanna, and my acoustic neuroma journey began in January 2010. Sometimes, it's hard to believe it's been 12 years. My symptoms hit all at once, vertigo, hearing loss and facial paralysis on my right side. An amazing surgical team from Iowa Methodist and Mercy Hospitals in Des Moines performed my surgery.
Post-op, I have single-sided deafness on my right side. I had my 2nd surgery the following December for my BAHA, which greatly improves my day-to-day. That said, Tinnitus an ongoing annoyance. Thanks to post-op PT and yoga, I have regained 98% of my balance. I have facial paralysis and synkinesis on my right side. Regular visits to my favorite doctor in Iowa City for botox treatments help give me back some symmetry, ease some synkinesis and give me a little of my smile back.
Some days are easier than others. I don't think I will ever be a fan of having my picture taken or going to big social events again. At the end of the day, I remind myself that life is full of challenges, and this is just one of mine.
14 months postop! Grateful to be where I am at after middle fossa surgery at UCSD. Then and now! My journey! At the age of 63, my AN was discovered in June 2013 and removed by translab in November 2013 at the House Ear Clinic. While it was small - 10mm - it took my hearing quickly. Surgery left me with SSD and 24/7 headaches.
But I didn't let that slow me down. I still own and operate a small manufacturing business, and in 2019 I designed and built a 2,700 square foot addition to my house. Going is really different direction for me, in late 2020 I wrote my first novel. The second novel is ready for editing and the third has been started. Life is different post-AN, but I refuse to let the challenges get in my way.
Thanks for all YOU do at ANAUSA providing information, guidance, and support for us. It is greatly appreciated.
I had my surgery in June of 2014, then went sky diving for my 40th birthday, just three months later. #ANWarrior Our family celebrating my mom’s ANniversary- 1 year tumor free! A pic from my second annual Team Katy walk to support the ANA! 3cm translab removal House Clinic LA Survivor Jon with wife Sara before the Newark Museum of Art Spring Gala. I was diagnosed fall of 2019 with a left vestibular schwannoma. Went in for surgery Super Bowl Sunday of 2020. It’s been a long road back, but I’m alive! Pictured is myself and my wife, hiking the Utah National Parks in Moab, UT. 3 cm tumor removed at age 27 in 2015. Started to roller blade recently! Right side craniotomy on 7/13/21
facial paralysis
still here!! ❤️
Still waiting and watching Gamma knife : AN ‘asleep’ for six years! I’m a AN survivor! First surgery in 2017 for a 3cm AN, had CyberKnife four months later. I am one of the few CK didn’t work on and my AN started growing quickly within the year to become 5cm. 2nd surgery in Feb 2020 at the House Clinic. Left with 100% left side facial paralysis but getting a small smile back from my nerve graft surgery! There is always hope! Acoustic neuroma surgery in 2018, at the age of 31.
Hearing partially preserved.
Deep damage to the facial nerve.
Tumor activity is currently showing, but I very much hope that it will not develop.
I'm a fighter.❤️
I had an AN about 13 years ago. I had it removed by Dr. Rick Friedman at House Ear Institute in Los Angeles. I live in OK.
So blessed that my only residual issues are ringing in my ear and some hearing loss.
This picture is from my GN day in May 2021. It’s been quite a journey, but working hard every day to help the other side compensate for the loss of balance and hearing (mine were destroyed when the vestibular nerve got crushed). Thank you! Since being diagnosed in Feb 2021, it has definitely been a journey.
I had Retrosigmoid microsurgery in June 2021, followed by Gamma Knife radiosurgery in October.
I am glad to be on the other side of AN, even though I've severely been suffering from Trigeminal Neuralgia and Occipital Neuralgia since November. I am beyond thankful for the ANA and all the awareness that is offered all year long! Because of the ANA, I am still learning and I'm able to help others understANd! :)
Celebrating 15 years tumor free this week I am from Nashville, Tennessee and I am a brand new AN WARRIOR. This coming Thursday, May 26, I am having surgery at Vanderbilt University Medical Center to remove my vestibular schwannoma via retrosigmoid approach. I am a private pilot and my goal is to be able to fly again. My name is Alisa and I live in Tkaronto (Toronto) Canada. I had AN surgery for a 4cm tumor in Nov 2014. This picture is from May 2015 when I was able to return to performing piano. Even though I now have SSD I can still perform! I also teach fitness classes and have returned to my fulltime medical secretary job. SO very grateful. I was diagnosed in July of 2017 and flew from pa to LA in sept of 2017 for retrosigmoid craniotomy. It changed my life. At 41 years old with two small children, I was forced to give up my store manager position, ending my 20 year retail management career. I am now plagued with daily migraines, vestibular dysfunction, dizziness, nystagmus, single sided deafness and anxiety and depression. My ‘small’ tumor I called Fred, was gone, but will never be forgotten. Life changing and disabling. I hope for a cure for all types of brain tumors in the future. This year I celebrate 5 years post op —retro sig. It’s been the best year yet. It’s a long journey of growth and progress but I am stronger because of my struggles! Keep pressing on AN warriors. Things will get better! Surgery Aug 2021
Translab removed Vestibular Schwannoma and cochlear Osia implant same time.
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