Photo taken after a 20 mile run.

This photo tells a 2 part story of wonderful things that have come into my life since my AN diagnosis and treatment. The first has been my dedication to yoga to increase and sustain my balance post treatment. I am now achieving goals and poses in yoga I would have never thought I could do even before I knew I had a brain tumor. Secondly, my volunteering with the ANA has been one of the best things my Acoustic Neuroma brought into my life. I have loved getting to meet and support so many different AN Warriors. It has truly been a joy.

2 months post op completing my first day back at clinicals for the nursing program.

I have always felt blessed that everything turned out well. I lost the entire inside of my ear on the effected side. I suffered full right sided facial paralysis. I was pre op nerve graph about 11 months post op when my face began to tingle. A good sign I was told. My facial nerve regenerated but the muscles in my face had atrophied. Leaving me with a slant and lose of my eye lid and the ability to smile ever again. I had surgery to put a weight in my eye lid. This was to help it close. Fast forward to today. I'm 59 now and dry eye, hearing loss, balance issues and the ability to open my mouth to effectively take a bite of food have become even more of a challenge. I have read many stories about others experiences and I am surprised that not much has changed. I donated my tumor to help with further treatments and hoped some day, sooner then later, great advances had been made. Thanks for reading.

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.

I was diagnosed and had translab surgery for a 2cm AN in September 2020. My husband and two kiddos have been an amazing support system for me. Kids are so resilient, they even know which ear they can whisper in and which ear "is broken".

After five years of watch and wait, I had retrosigmoid surgery on 4/1/2021 that lasted 12 hours. Lost hearing in ear but no other issues thankfully. Home in 3 days! I very much appreciate all the knowledge I gained from ANA about this type of tumor. I was very prepared for the surgery that I chose. Thank you for all you do!

Six months post op, middle fossa. South Africa, Hermanus. I’m an AN Warrior!

I’m set to celebrate my ANnniversary on 5/12 which is during AN week. I had surgery at UCSD. I am thrilled to celebrate my first ANniversary. I want to continue to move forward In my recovery. I am making huge strides in vestibular therapy. I am SSD for a 2.5cm AN. I’m adjusting to life with SSD but it’s so difficult. I am physically and mentally stronger as each day passes. I want to share my story with others to show people that life with an AN won’t stop you. It’s just a bump in the road.

Successful cyberknife treatment in 2017. 77 years young now.

My AN is in the only ear I hear out of. I am deaf on my left, profoundly hard of hearing in my right ear with a watch and wait AN, which is growing slowly.

Wearing the AN Awareness week T-shirt to show support for my Wife, Lorrie. After her diagnosis in September 2018 her/our life has changed forever. At first, we looked at each other & said what is an Acoustic Neuroma/Vestibular Schwannoma brain tumor? We had a lot of questions and concerns, spent many hours with multiple doctor appointments and her worst nightmare, the MRI (her anxiety went threw the roof ). She did an amazing job getting thru the MRI and audio gram /hearing tests followed up with even more doctors visits to discuss the MRI results and what our options were with this tumor. Both of us are thinking she will need surgery. The doctor suggested, since it was caught early, to “watch & wait” with another follow up MRI in 6 months. Longest 6 months ever. We learned more about the popping in her ear, brain fog, tired, ( I have called it an invisible illness. She looks great on the outside & nobody has a clue what she is dealing with on the inside.) The next 6 month MRI.. we will take it the great news.. NO growth. Now she is learning how to live with symptoms & side effects of AN. After the 6 month MRI Lorrie has the doctors approval to watch & wait to yearly MRI’s. In January 2021 at her 1st “yearly” MRI the results showed minimal growth. Doctors are still suggesting watch & wait and see you next year. Lorrie did not allow the AN to stop her from fulfilling a dream she has always wanted to complete. In 2019, she Graduated with her Bachelors of Science Degree with Magna Cum Laude honors. I’m truly amazed at how she has overcome & adapted to her new normal. She is living her life to the fullest. She enjoys spending time with her family and friends... can’t forget the 3 dogs & 2 cats.

I am 6 weeks post op! Middle Fossa surgery at UCSD full tumor removal and hearing preserved!!

2 surgeries and 2 years in the clear.

AN Warrior from Spain. Looking forward to my first ANA awareness week

My name is Emily and I am 36 years old. My husband and I have 3 beautiful children and I would love to share a little of my AN journey for acoustic neuroma awareness week. In January 2020 I was sitting in a ENT’s office telling him how I had a very loud constant ringing in my right ear and I was feeling off balance regularly. He immediately ordered a brain MRI and to my shock he found what he was looking for and I was diagnosed with a vestibular schwannoma or an acoustic neuroma. Very soon after my diagnosis I was matched with a brilliant medical team at Vanderbilt University Medical Center in Nashville, TN where I was a watch and wait patient until August 2020. In August my second MRI showed the tumor was aggressively growing and was 1.7cm x 1.0cm. My symptoms had been worsening as well during those waiting months. I was having some episodes of vertigo, mood swings, fatigue, hearing loss and the ringing was getting louder. I had surgery on November 12th, 2020 for a complete removal of the tumor with the trans-labyrinthine approach. My surgery took 10.5 hours and I spent 24hours in neuro ICU afterwards. I lost both my hearing and balance nerve with the complete removal of the tumor. My doctors were able to preserve my facial nerve and I am forever grateful. May 12th, 2021 marks 6 incredible months of recovery! The tinnitus ringing became worse after surgery, but has since gotten a little quieter. I also have pulsating tinnitus in the same ear that makes it where I can feel the vibrations of my own voice and foot steps pretty dramatically. This became pretty intense post surgery, but has since gotten better. If I talk too much or too loud it will make the ringing tinnitus get louder and causes pain to my deaf ear. I lost all external hearing in my right ear. Singing is still too difficult and painful, but I am dreaming of the day when I am dining again without pain to my deaf ear. I was taking baby steps 2 days post surgery and walking became steadier and steadier everyday that followed. I was able to pick my babies up in January, I started driving again in February, I was able to cry for the first time in March and I also rode a bike in March! I have resumed work, Pilates and all soccer mom duties with honor. I am forever thankful for my medical team and their grace and expertise during this very delicate season. To the acoustic neuroma association, having your resources helped me understand my journey so well. Being able to understand and learn about something so shocking was such a tremendous peace and incredibly helpful. Thank you for your work and effort to further research and have conversations about acoustic neuromas. You are truly making a difference. And to every acoustic neuroma warrior that blazed a trail before me THANK YOU. You showed me that I as well, could walk this journey with strength. Being able to hear the gentle rhythm of my heartbeat with the pulsating tinnitus is a beautiful reminder every single day of how incredibly thankful I am to be alive and have quality of life with my family. I am forever thankful for this journey and my story. With so much adoration and sincerest gratitude, Emily

My mother is a recent AN warrior. She had her acoustic neuroma tumor removed two weeks ago, April 22, at Mount Sinai Hospital in New York. As a mother of triplets, my mom has always been a very strong person and with hard work has handled curveballs thrown her way. This year has tested her in many ways. From losing her father to Covid-19 to getting brain surgery, she’s been resilient and has adapted and coped with the difficult things that have happened throughout the past year. My mom has an incredible mindset and sees the positive in all situations. Even when my mom gets knocked down she has an incredible way of looking at a negative situation in a positive light. She always finds growth from moments of adversity. She is on her way to recovery and our family is very thankful for the Acoustic Neuroma Association. At a time of uncertainty you provided our family with not only resources, but a lot of hope. My mom truly is a warrior and an inspiration to me and my brothers.

My name is Brenda. I was diagnosed with my acoustic neuroma named Peanut on Feb. 19th, 2021. At first, we though he was 1.7 cm, but after multiple doctors looking at scan, he was 2.4 cm. I was experiencing some hearing distortion, ringing and a feeling of fullness in my right ear for a year before doctor ordered an MRI. We decided to travel to San Diego from Virginia to have the team at UCSD remove Peanut via translab on April 6th. I can't thank my nurse enough on my 2nd day in the hospital to give me the courage to set goals that morning and be sleeping in my hotel by that night...2 days after a 7 hour surgery! My husband and I were walking on the beach in La Jolla a week later and we were joined back in Virginia by week three hiking Great Falls trails on the Potomac River. I'm only a month out of surgery and I'm far from my pre surgery self, however....I feel like everything is still in YET mode...I can't do ______YET! I'm working hard every day to get my life back minus the hearing on my right side. I'm a physical education teacher and my plan is to be back in the gym by August looking at the beautiful faces of my students and hearing their joy of being active...just with only one ear!

18 years and counting! 1 Acoustic Neuroma 3 other brain tumors

10 months post-op

Everett (11 yrs) Had his AN removed last Feb 2020 at UCSD. He is in the 5th grade this year and is great! We have been so appreciative of all those who shared their experience with us. He had some facial weakness for about the first 6 months but is doing so much better now!

My name is Melissa and I am 9 months post retrosigmoid. I was able to go hiking for the first time without being really dizzy😊

Four weeks post-surgery on a large AN. Just got a haircut to balance out the shaved part from the rest. Great confidence booster! I still have right face paralysis that is a horror on my eye. I live in Calgary, Alberta, Canada in what is essentially desert conditions. But no more killer headaches, loud tinnitus, terrible fatigue and cloudy brain. Right after surgery it was like someone turned the noise off in my brain and felt 400× better. A NEW life and adventure to come.

Surgery 5/6/10

Summer of 2020, ten years after AN surgery and just following salivary gland cancer removal/radiation. Blessed with each day!

My name is Cris. On July1st I’ll be 6 years post-op from retrosigmoid with Drs. Golfinos & Roland at NYU Langone. In March of 2015, I woke up one morning experiencing loss of balance. I fed the cat like I normally do and hid my head on the wall going up the steps. I though I must be over tired because I had just gone back to work full-time after recovering from a lumbar spinal fusion 6 months prior. I was diagnosed with vertigo the following day. A week later I woke up noticing significant hearing loss in my left ear. I was told it was related to the vertigo and put on more steroids. I was told that if the hearing did not return in 3 months, an MRI series would be done. I never regained my balance and even with the vertigo meds, continued to topple over. In mid-April, I asked the ENT to I initiate the MRIs. I was diagnosed with a cystic, 1.6cm Acoustic Neuroma the third week in April. I was told, based on tumor placement that I had the possibility, in addition to the normal facial nerve concerns, of losing mobility in my left arm/hand. My successful surgery in July, 2015, resulted in the 3 side effects that many AN patients experience - SSD, vestibular disorder, tinnitus. I am so very blessed to have had an amazing surgical team and family, friends, neighbors and coworkers that supported me every wonky step of the way! And the ANA was instrumental to educating myself and preparing myself and my husband for surgeon interviews, treatment options and what to expect. I am so grateful for the ANA. I am currently doing a fundraiser for the organization as my way of saying thanks. I continue to be a member of several online AN support groups and help where I can. Six years later I can do everything I did pre-AN, ride my bike, hike, workout. It’s amazing.

Active Surveillance since diagnosis in January, 2018. Staying very physically active and continuing to learn as much as I can.

I was diagnosed in 2018 with a 1.8 cm AN. It was followed by MRIs every six months. September 2020 it showed growth to 2.0 so I knew it was time for radiation. I had CyberKnife in January 2021. God is good - He has been with me every step of the way.

Gamma Knife 2015 @ NYU Dr. Golfinos and Dr. Silverman

I first learned about my AN May of 2019 after seeing my primary doctor due to my headaches that would never go away.
I told him I had tried all over the counter migraine and pain medication and nothing was working, and he ordered an MRI with and without contrast. At I first I thought it was little extreme to order an MRI for headaches and didn’t do anything when my insurance denied my MRI but my doctor’s office called to ask if I had the MRI and I said it was denied by my insurance they said they would take care of it and I got the approval to get my MRI. When I got the results I was devastated because I was only 42 years old with 3 small kids and I didn’t know anything about acoustic neuroma.
After my diagnosis I understood why I fell down 3 times in one year and almost broke my foot twice and why I was getting dizzy all the time, the eye twitch and the buzzing in my ear. I was told the headaches were probably not related to my AN and I was sent to see a Neurologist to get medicated and treatment. The treatment for the headaches didn’t work and my symptoms started to get worse. I started to have facial pain and my ear started to feel clogged.
I had 96% hearing in my AN ear and I was afraid if I didn’t do anything I would wake up deaf one day. I decided to take action even though the first Neurosurgeon I saw told me to stay on wait and watch. I saw 3 ENT doctors and one more Neurosurgeon and I got a phone consultation with another Neurosurgeon as well. The doctors keep saying to wait and watch because I could lose my hearing and they were not sure if the surgery was going to help with my headaches. The doctors I saw said it could make my headaches worse after the surgery but could not take the headaches anymore and went to see one more doctor and he said it was my choice, he said I could just wait and watch, have radiation or surgery. He said I only had 50% chance of saving my hearing but I told him I wanted to do the surgery.
I had my surgery September 6, 2019. Unfortunately I did lose my hearing during my surgery but my headaches are gone and no facial paralysis.
I was I told I was a good candidate for cochlear implant and October of last year after my one year MRI follow-up I decided to go ahead and get the cochlear implant. My hearing is still a work in progress but it is getting better little by little.

I chose to show me jumping on the trampoline because 1) it shows I can do just about anything physically even though I’ve had to re-learn my balance and 2) it’s something I do most days with my little two.

I had my surgery last year during stay at home orders. It was quite a different experience being in the hospital with no family or visitors. But the advantage is I spent the summer with my mom, recovering. It turned out to be our hottest summer on record!
My AN journey has lead me to learn more about myself. I’ve had some undesirable side effects as the result of my AN. But I have family, support, my local AN group, and a wonderful team of doctors and therapists to help me along. I’m grateful to God to be here today and be able to share my journey, experience, and hope with others. #ANwarrior

My name is Bonny and here I am in Florida this past January with my husband Bryan, my Team ANA Hero. I like this photo b/c I think I look relaxed! I had retrosigmoid surgery in the summer of 2017. It means a lot to me to be able to travel. Next up: Colorado in 2 weeks!

Post surgery 5/6/21. So thankful for ANA and Vanderbilt University in Nashville.

I am 17 months post-op and 9 months from gamma knife. I had house grade VI facial paralysis....but my face is still healing!!!

18 months post-surgery

This week is #spotlightonAN during AN Awareness Week 2021. I was diagnosed with my AN (acoustic neuroma) one year ago this week. I remember the MRI and exactly where I was and what I was doing when I received the "There is a mass pushing on your brain stem" phone call. I remember the doctors' appointments, excel spreadsheets, and endless Googling. I'm grateful to the Acoustic Neuroma Association (ANA) for the copious amounts of information they had readily available for me to consume. At the time, there were 58 webinars available for viewing, and I watched every single one. Two months from the day of my diagnosis, I had surgery across the country, alone, due to Covid-19 restrictions. I went from no hearing loss to single-sided deaf and from a 30% balance deficit to 100%. My AN changed everything. I went back to work two weeks post-surgery, juggling vestibular therapy, physical therapy, massages, osteopathic manipulative treatments, and the final two classes for my play therapy certificate. Life was busy, and recovery was hard. During this time, I reflected upon my experiences and felt a great dissatisfaction with aspects of my care, leading me to shift my professional experiences into a new field. I took the grief and pain I was feeling and channeled it into the doctoral application process. Fast forward to the present - I begin the University of Florida's doctor of audiology program this Fall, and I completed the DriTri (2,000-meter row, 300 bodyweight exercises, and a 5k run) at Orangetheory Fitness last month. I am still frustrated by my single-sided deafness. I have a preoccupation with my medical history that borders on pathological. Still, I am excited for the opportunities that lay ahead - a field I never would have entered if not for my AN. I hope to help positively impact the AN community and give back because the ANA has meant so much to me.

I had my surgery to remove an AN in September 2020 and my favourite photo post op shows off my 6 month tuft, which to me is a physical representation of how much I’ve grown and accomplished since then!

. I was diagnosed with AN a few days after my 50th birthday in October 2018. My youngest child of six children was 10 at the time. I had retrosigmoid craniotomy on the large tumor November 2018, about 6 weeks later. I did vestibular therapy for 10 months, and I've been in facial nerve therapy with Jackie Diels since May 2019. I started functional botox in March 2021 (due for a second round in early June.) at the Kellogg Center at U of M in Ann Arbor. This photo was taken on Mother's Day with my husband. Interestingly, Mother's Day 2018, when I tried to talk to my mother on the phone that day, was when I realized that I was losing hearing. I didn't really think that much about it. I haven't gotten to watch many of this week's videos, but a few. Always appreciate the information and support.

Surgery in 2015, almost 6 years out with a retrosigmoid approach. Deaf in my left ear, and doing awesome! I'm a letter carrier with USPS, and have been doing it for 20 yrs. Keep on keeping on my warriors!!

3.5cm tumor. Radiation 2015

Three months from diagnosis of an aggressive AN to microsurgery via MiddleFossa at UCSD in 2021. All went perfectly, except I am dealing with major balance issues. I am in vestibular therapy twice a week, and hope to see improvement soon. My goal is to be driving by 2022!

April 3rd, 2020, right side surgery. 5cm tumor. Dr. A. Samy Youssef and Dr. Samuel Gubbels. UCHealth, Anschutz Medical Campus.

My earliest symptoms, that I can recall, showed up more than 12 years ago- meaning my tumor was there probably 15 years. Most symptoms were brushed off as ‘common migraines’, sinus trouble, and depression for years by doctors. In early 2017, I was misdiagnosed with Ménière’s disease because I had severe positional vertigo, dizziness, loss of balance. It wasn’t until I woke up in late September almost completely deaf in one ear, that I was correctly diagnosed with an Acoustic Neuroma. In December of 2017, I had a 6 hour surgery to remove (de-bulk) part of the 3cm tumor that had grown into and was compressing my brainstem. I had CyberKnife Radiosurgery (radiation) four months later in 2018 that was supposed to kill the remaining tumor. My Acoustic Neuroma stayed level for a little while but by 2019, it started to grow again. These ‘slowing growing’ tumors don’t always behave. Occasionally, they become aggressive and grow quickly. Mine became very aggressive and grew to 5cm within the year. It grew into my brainstem again- causing it to become life threatening. In February of 2020, I had an 11 hour life-saving surgery with 2 of the best- Dr.‘s Lekovic and Slattery at the House Clinic. During this journey, I started writing about what was happening and how I felt. With God, my family, church family, and friends we got through the worst part. The thing about having health issues is- life keeps going while you’re struggling. I have many issues that make life difficult at times. Along with the balance issues, brain fog, single-sided deafness, and brain fatigue that came with my 1st de-bulking surgery, I now have complete facial paralysis on my left side. I had a 12/7 nerve graft at the end of 2020 to start the healing process. It won’t fix my facial paralysis but it’s the start of keeping my muscles active. I know there will be more surgeries in my future. As for now, having FP is difficult along with all the other issues this tumor left me with, but I am learning how to deal with them better everyday and I am just so thankful to be alive!

I was on a lot of pain meds but on my first outdoor walk post op, this sign was right out front and I thought it was so hilariously appropriate!

Middle Fossa 7-26-05 House Ear Clinic