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Poll: AN Side
Is/was your acoustic neuroma on your left side or right side?
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Employment Considerations
We’ve created this employment reference guide as a starting point for you. The information comes from patients, volunteers, and caregivers. Each AN journey is unique, and employment situations can certainly be distinctive. We encourage you to use this resource to consider a variety of situations, questions, and options. This is not meant to be comprehensive, nor should it be considered legal advice. Please reach out to us with comments/suggestions at info@anausa.org.
At Diagnosis
- I’ve just been diagnosed with an Acoustic Neuroma (AN) sometimes called a vestibular schwannoma. How will this affect my job? Who do I need to inform and how much should I disclose?
- Determining what to share and with whom should be considered carefully, and will vary depending on what you and your medical provider determine to be the best course of action to manage and/or treat your AN. It will also depend on your job function and responsibilities at your place of employment.
- Thoughtfully consider how and when to have these conversations. For example, if you and your provider decide the “Watch and Wait” approach is best for you, you may find there is no need to discuss your diagnosis with anyone at work, especially if you are symptom free.
- Consider reviewing your healthcare/benefits plan annually.
- Check deductibles, out-of-pocket expenses, available providers (in/out of network), Flexible Spending Account (FSA), Health Savings Account (HSA) if applicable, etc.
- If you are able to travel for your treatment, will your insurance cover your treatment out of state?
- Does your company offer an EAP (Employee Assistance Program) or similar service for initial support or recommendations for legal, mental health, etc. resources?
- Your Human Resources (HR) department can help you understand what time off allowances are available to you. You may receive the following:
- Paid Time Off (PTO)
- Sick Days
- Vacation
- Short-term Disability (STD)
- Long-term Disability (LTD)
- Leave of Absence (LoA)
- My AN treatment has been scheduled. What should I consider next?
- How much time will I need to take off for my AN?
- Each treatment option will impact your ability to work and when differently. Speak with your medical provider about your specific role and responsibilities to get additional insight that will guide your time off decisions.
- Ask your provider if there is a patient navigator on staff with whom you can consult. If so, their help can be invaluable in assisting you with returning to your normal work routine.
- You’ll want to evaluate any potential financial impacts of your time off, e.g. out-of-pocket medical and prescription (Rx) expenses and potential reduction in or loss of income.
- It’s important to discuss with your provider if your treatment choice will impact your professional capabilities and how. Depending on what you do, there may be minor accommodations necessary to return to work. Depending on treatment, some patients have experienced lower stamina for a period of time post-treatment, potentially affecting their ability to work long hours. Consider discussing this with your employer to review any specific plans for your return to work.
- How much time will I need to take off for my AN?
- My AN treatment is next week. What should be on my to-do list for work?
- Confirm your projects and work responsibilities are in order.
- Confirm any out-of-office notifications and chain of custody/responsibilities are set and communicated.
- Confirm your time off (PTO, short-term disability, etc. as needed) has been properly scheduled and approved.
- Consider providing updated personal contact information (during recovery/post-op and/or if traveling if you don’t expect to be focused on screens). Some patients have found it helpful to identify a point of contact ahead of a particular treatment or procedure and/or during the initial recovery phase. This proxy could help relay important information back and forth with specific people so that the patient can remain focused on recovery.
- Document all of your usernames/passwords so that you remember them upon your return to work.
- Work with your HR and IT teams (where applicable) to let them know that you'll be away from your computer/systems access for a certain amount of time and to understand if there are any system/organizational changes that will be happening during that time (new tool rollout, new time reporting systems, etc.) to ensure that you will have access to training and support upon return.
- Potentially consider if they are able to preemptively update your systems and tools while you are available to get ahead of any known security updates or forced password expirations, etc. so that you are less at risk of being locked out upon return.
- Confirm with your company that any important meetings or educational/informational sessions will be recorded and collected for you so that you can review once you are back or potentially as part of your return process.
- Confirm your projects and work responsibilities are in order.
During Treatment
- It’s important to focus on your health and healing as much as possible and follow the recommendations and treatment plan as established with your medical provider.
- If you have decided to take FMLA-approved leave (Family and Medical Leave Act), your employer should not contact you regarding any work related issues while you are out.
- Many patients agree, in the first few weeks after treatment, reducing or eliminating as much screen time as possible can help considerably to prevent headaches, nausea, dizziness, etc.
After Treatment
- Follow the medical recommendations as outlined by your provider.
- Many patients have found working with a physical, occupational, and/or vestibular therapist to be beneficial. Consider discussing your specific needs with your employer to communicate and coordinate any support you might need and align on any impact to your expected work routine.
- Review your current work setup to ensure it matches your needs.
- Evaluating when to return to work will depend on a range of considerations. Consider sharing the impacts of your AN with your co-workers, business relationships, and managers. Some side-effects have included, but are not limited to, the following:
- Fatigue
- Headaches
- Hearing Loss or Single-Sided Deafness (SSD)
- Facial Paralysis/Weakness
- Dry Eyes/Eye Weight and future surgeries
- Mental/Emotional Fatigue
- Stress or Anxiety
- Balance
- Mood
- Sensitivity to light/sound/stimulus
- Difficulty locating origin or direction of sound.
- Keep in mind, what you experience in the first three months after treatment will likely change in the next year.
- Evaluate the long-term impacts of the AN side effects on your career. Consider the following questions:
- Are you still able to meet the demands?
- Are you experiencing any dips in performance?
- Are there any role changes or professional duties that have been changed?
- Were you part of that discussion?
- Do you feel supported or discriminated against?
- If you find yourself without the feeling of support professionally, or the target of discrimination, we encourage you to speak with your HR department, seek professional legal counsel, and/or union representation where applicable.
- Are there any role changes or professional duties that have been changed?
- How have your side-effects changed your professional relationships?
- How can I help my co-workers understand?
- Consider getting support from your HR department.
- How can I help my co-workers understand?
- Many patients have found the desire to reflect on their happiness and satisfaction with their current profession to accommodate any changes to their new lifestyle. As with any major event in your life, consider carefully before making any significant decisions too soon after treatment.
- How might I prepare for any lasting impacts as a result or side effect of my AN or treatment?
- If your hearing, balance, or facial nerve function has been disrupted due to your AN or related treatment, there may be special accommodations needed for you to perform your best at work. Open communication with your supervisor and HR Department is usually the best way to go.
- Coping with hearing loss, facial paralysis, and/or loss of balance is difficult and potentially overwhelming emotionally, physically, and from a sensory standpoint as well. Loss of orientation/sound origination difficulty is common.
- If your hearing, balance, or facial nerve function has been disrupted due to your AN or related treatment, there may be special accommodations needed for you to perform your best at work. Open communication with your supervisor and HR Department is usually the best way to go.
- Many patients have found asking for these potential solutions can help significantly. Consider speaking with your manager about any accommodations you believe would be helpful to your situation such as the following:
- Quieter work space
- Optimized desk set up for single- sided deafness (i.e. Not having a co-worker on deaf side, phone on the optimal side of the desk).
- Asking for different seating during meetings or perhaps use of closed captioning during video conferences can be helpful to those with hearing loss or SSD.
- Other auditory supports (headsets/mono-speakers, etc.)
- Temporary or permanent schedule adjustments (to support treatment/therapy needs or impact of fatigue, etc.)
- Reviewing any video conferencing etiquette expectations - Fatigue, hearing-loss, and/or facial paralysis can change how comfortable some are with being on video calls or having in person meetings - especially in the early stages after treatment.
- Reviewing travel needs and expectations - Fatigue, hearing-loss, facial paralysis, balance changes, etc. can impact
- Telecommuting opportunities - Potentially more acceptable and commonplace in many industries given recent global conditions. Remote work can help bridge the gap for you to transition back to your previous worksite or potentially be a longer term or hybrid arrangement to help accommodate your needs.
Gamma Knife/CyberKnife/Radiation Therapy/etc.
- Partner with your medical provider to understand the potential impact of this treatment course and determine what communication plan is needed.
- Some have a one-time treatment while others might have a series.
- Consider your situation and discuss with your manager/HR representative as needed to plan for any out of office or coverage needs.
- Evaluate your symptoms pre and post treatment and consider discussing your situation with your HR representative and/or manager.
- Working with a therapist to manage the emotional burden of having an AN has been beneficial to many.
- You may decide not to disclose anything related to the diagnosis, in particular if you are symptom free.
Watch & Wait - Active Surveillance
- The emotional burden of living with an AN in Watch and Wait can be difficult. Some have found the ANA support groups to be beneficial as well as seeking counsel from a therapist.
- Review your healthcare/benefits plan (HSA planning), check deductibles and out of pocket maximums to consider how your needs could change year to year around open enrollment.
- Similarly to other situations, you may decide not to disclose anything related to the diagnosis, in particular if you are symptom free.
Additional Resources and Reference
Glossary of Terms
FMLA - Family and Medical Leave Act - The FMLA entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons with continuation of group health insurance coverage under the same terms and conditions as if the employee had not taken leave.
LTD - Long-term Disability
Reasonable accommodations - any change or adjustment to a job, work environment, or the way things are usually done that would allow an individual with a disability to apply for a job, perform job functions, or enjoy equal access to benefits available to other employees.
STD - Short-term Disability
SSD - Single-sided Deafness or asymmetrical hearing loss.
Useable or serviceable hearing - A degree of hearing most likely not considered profound or severe hearing loss. Discussion with an audiologist is recommended.
Vestibular therapy - a type of physical therapy designed to help reduce effects of dizziness and improve balance.
Watch and Wait (W&W) - active surveillance and monitoring of an acoustic neuroma to observe how things progress over time to determine if a particular treatment or alternative course of action is needed.
Links and Other Resources
Equal Employment Opportunity Commission (EEOC)
Family and Medical Leave Act - Employee Guide
Americans with Disabilities Act (ADA)
ADA - Fighting Discrimination - Employment Resource
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Calling all artists!
We want to highlight artwork from the AN community to commemorate this momentous occasion. If you are an artist - painter, graphic designer, photographer, sketch artist, whatever! - we would love it if you sent us something to be displayed here in our Showcase. Our hope is that by creating a collection of these wonderful pieces, we might tell a great, patient-focused, artistic story for our 40th anniversary. More Information.
The sunset bicycle photo symbolizes my joy in recovering bike riding for work commuting as well as for enjoyment. I also really love this quote for the AN journey, "Life is like riding a bicycle: to keep your balance you have to keep moving." My day job is painting large, outdoor murals with my daughter. This mural is all about nourishment. Being the portal to a roof top community garden, the association with food is obvious. But we recognized that the soul needs nourishment, our emotions need to be fed in positive ways, what is sapped from us just through daily living needs replenishing…this would require a good dose of inspiring beauty: art as nourishment. My day job is painting large, outdoor murals with my daughter. This mural is all about nourishment. Being the portal to a roof top community garden, the association with food is obvious. But we recognized that the soul needs nourishment, our emotions need to be fed in positive ways, what is sapped from us just through daily living needs replenishing…this would require a good dose of inspiring beauty: art as nourishment. “Interiority" - the surgery brought my attention even deeper into the interior of my body: my brain, ear, balance mechanisms and abilities, overbearing sounds (tinnitus), and a gigantic feeling of isolation from others and the world. I had to move slowly and carefully at first as if the cellular matrix of my being was, for the first time, making me take notice. I no longer could take any movement or bodily ability for granted. All of me was on alert and highly sensitive. My handling of paint changed and still keeps changing. I don’t really know why but only know my focus is somehow different and my stamina/force has been modified. I used to paint with large paper or canvas on the floor. I no longer feel good doing this, putting my head lower than the rest of my body. I now need more rest and sleep is good for me. If I push myself too hard I get very edgy. I don’t like this anymore whereas before for maybe 40 years, I thrived on my edginess and force. The nature of all these things are morphing. So be it.Emily
Mary Ann 1
Mary Ann 2
Mary
Jilliann
Robert 1
The entranceway is designed as a portal, a fantasy transition from the ordinary to the fanciful. To have our passage bear fruit, we often need to let go of what was, to allow for what may be. The AN, and the resulting SSD, robbed me of the ability to be the kind of musician I was, a performing percussionist, who also blew the shofar at my synagogue. But the letting go, sometimes forced on us, allows us to focus on what is behind the particular form of doing, to uncover what is the essence of our being. I now have a ministry in hospice care, sharing songs intimately with our patients and families…totally unexpected and both gratifying, and humbling.
All doorways are like this, we go from what we know to what awaits. The poet Rumi says it well, as he concludes in his poem, The Guest House: “Be grateful for whoever (whatever) comes because each has been sent as a guide from beyond.”
Finished mural: FOOD ROOF, my partner-daughter is in the doorway celebrating. The interior, except the roof, is a UHaul, self storage facility.
Robert 2
The entranceway is designed as a portal, a fantasy transition from the ordinary to the fanciful. To have our passage bear fruit, we often need to let go of what was, to allow for what may be. The AN, and the resulting SSD, robbed me of the ability to be the kind of musician I was, a performing percussionist, who also blew the shofar at my synagogue. But the letting go, sometimes forced on us, allows us to focus on what is behind the particular form of doing, to uncover what is the essence of our being. I now have a ministry in hospice care, sharing songs intimately with our patients and families…totally unexpected and both gratifying, and humbling.
All doorways are like this, we go from what we know to what awaits. The poet Rumi says it well, as he concludes in his poem, The Guest House: “Be grateful for whoever (whatever) comes because each has been sent as a guide from beyond.”
From a drone, you can see the gardens on the roof, and how much all the color enlivens this area just north of downtown St. Louis.
Manjusha
Julia - I FEEL vs YOU SEE
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As the ANA turns 40, we want to hear from patients, family members and caregivers. Tell us how the ANA has impacted your AN journey - just a quick snippet about some unique part of your experience or something that made a significant difference for you. Include a photo! Submit your impact story.
Congratulations to the ANA on its 40th anniversary! It is a joy to see how ANA has grown, and to remember that I was fortunate to be one of many who were part of its development. I was the ANA’s Executive Director from July 1996 until March 2005. I truly admire the work of the Executive Directors that followed me and it’s evident that the ANA continues in good hands, moving forward and effectively serving the needs of acoustic neuroma patients. Sincere thanks to all those who have continued to advance the organization. When I was first diagnosed with my AN, I had researched online and discovered the ANA. I phoned the office. I spoke to wonderful people who listened, cared, sent me information, thus, I was able to reach out to others that also endured AN journeys. Congratulations on this anniversary and all your great work. I know that for me, you being there, always more than helpful, with information and support has always been appreciated. I know that I am also speaking for my sister Sara. I had surgery (successful) for an acoustic neuroma in 1980! Just as ANA was beginning. At 82 years old I am alive and well.😊 It has been two and a half years since my AN diagnosis. My husband (pictured with me) discovered the ANA website and materials that guided my treatment choice. We would have been lost without the valuable resources of the ANA. The discussion forum, peer support volunteers, support group and countless outstanding online presentations have
guided us throughout this journey. We are still learning and I am now a peer support volunteer. I hope to give back to the organization through this work. My husband and I are now enjoying a wonderful retirement. I am so thankful for this organization and offer congratulations on 40
years of success! The ANA was there for me at several critical points in my journey. I found their information on their website on my way to meet with my ENT to get more information about the brain tumor I had just found out I had. Reading the ANA's resources in advance of that first meeting helped prep me with questions to ask and have an idea of where this diagnosis was going. I also used the Peer Mentor program and the discussion forum to ask questions of other AN warriors as I was going through my recovery. I have now been volunteering with the ANA for several years and it has been a fabulous experience getting to meet other AN warriors and support them on their journey. I have so enjoyed being a Peer Mentor, hosting a Community Connections meeting, and leading the Young Adult Support Group. It has been so rewarding to take a difficult experience and use it for the good of others, and the AN community is full of spectacular people I feel so lucky to be able to connect with. I received my AN diagnosis the Friday before Thanksgiving in 2012. I came home in a fog and immediately googled Acoustic Neuroma and found the ANA. Within 24 hours I had the Peer Mentor List and began calling everyone on it and was so grateful for how open everyone was about their experiences and making a treatment decision. I chose Gamma Knife In January 2013.
Fast forward to today and I am happy to say I am a peer mentor and a board member. And I can say I am in the best health and fitness shape of my life! I was diagnosed in July of 1990. My doctor put me in touch with the founder of ANA G. Fickel, who I spoke with over the phone which helped to calm me down, which I needed at the time. My miraculous recovery from a medium to large tumor involved loss of some hearing in the affected ear and some facial and right side weakness. I am 78 now and thank God for the extra time to live a full life. My diagnosis came in 2004 when the internet was still finding it's feet. The ANA site provided some great information but finding out what to expect written by people who had experienced AN rather than just medical facts was difficult to find. I was diagnosed with an acoustic neuroma when I was 22 after sudden onset dizzy spells. It was the scariest time of my life. Prior to that first dizzy spell, I was a perfectly healthy 20-something year old, and a newlywed to boot. I was just enjoying my life, and suddenly I had this thing growing in my head. I support the ANA because of what a huge resource and network it was for me from finding out about my tumor as well as getting me connected to others in a similar situation. I have a heart for the community especially when there are amazing organizations like yours who are supporting people going through something so shocking and life altering. I want to support the ANA so that you can continue to reach more people and continue to come alongside us who are diagnosed. Lois
Phyllis
My hope for the next decade of the ANA is to find out why AN’s develop through research, which hopefully will also lead to enhanced treatment options to minimize post-treatment impacts, and also continue being a lifeline to those of us with AN’s. Congratulations to the ANA for 40 years… and to Ginny Fickel Ehr, thank you! Paul
I wish you and everyone at the ANA, many, many more years of success.Martha
I have no facial paralysis. Deaf in the right ear and impaired balance. You won’t hear me complain. I have been alive to raise our two daughters, have three grandchildren. Vince and I have been married 58 years. I am grateful every day and I hope this will bring encouragement to some.Mary Ann
Emily
Robin
Joe
Russell
I came across a link to a web diary (blogs weren't a thing yet). A guy from the US had journaled his experience from pre-op to several months post-op. It was an uplifting diary that helped me learn what to expect regarding mobility, pain, hearing loss, and facial paralysis post-op and to keep positive about life beyond AN.
It inspired me to do the same, so I began my own web diary starting from a week before my procedure in May 2004 and continued it for the next few years, updating it daily, weekly, monthly then yearly as time went by.
In 2019 I published a book with the full diary of 15 years of experience along with the ups and downs of having a BAHA.
I still have single-sided deafness from the op and occasionally the lack of balance on the right side causes a tumble. My face only looks slightly paralyzed when I yawn but all these are nothing compared to what might have been. I value life and never take anything for granted.
Thanks for your great organization and the help you give. Kalie
When I went in for consult, my surgeon told me I'd probably had the neuroma for 10 years or more. It had grown so big, it was cutting off the flow of my spinal fluid, causing the intense dizzy spells. He estimated that I probably had about six months left before the tumor cut off the flow of fluid completely, leaving me in an irreversible coma.
They removed the acoustic neuroma 19 days after my 23rd birthday, leaving me deaf in the right ear and without a right balance nerve. My facial nerve was doing some insane acrobatics to avoid the tumor though, curling up and over and away from it. Though I did have temporary paralysis, I regained total motor control in my face with therapy, and learned how to re-balance myself.
I am forever grateful to my medical team that took care of me pre-surgery, during surgery, and post surgery. Because of their care, I went on to give birth to two perfect boys and am expecting a beautiful little girl any day now. Because of their dedication, my husband and I are about to celebrate our 10th wedding anniversary. Because of their compassion, I am alive, and I am grateful for it every single day. Borah
I love the ANA and what you do for us and our loved ones. I want to help make a difference for those that come after me in diagnosis.
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The ANA At A Glance
Together For Better
Together for better care
Together for better outcomes
Together for better discoveries
The Acoustic Neuroma Association, the premier resource to the acoustic neuroma community, informs, educates and supports those affected by acoustic neuroma brain tumors.
The ANA offers several partnership opportunities for medical providers.
Read more about our Ways to Partner.
