hearing

Challenges for People with Hearing Loss

joanne — Tue, 19 Apr 2022 00:56:25 +0000

Challenges for People with Hearing Loss joanne Mon, 04/18/2022 - 20:56

Sheri Eberts

What Covid-19 Has Taught Me about Hearing Loss

As a hearing loss advocate — and a person who has lived with hearing loss for more than half my life — I pride myself on knowing a lot about the challenges it brings. Over the years, I have become skilled at self-identifying, using assistive listening technologies, adjusting the environment for better hearing, and asking others to use communication best practices. But as the pandemic has shown me, there is always more to learn.

I rely on lipreading more than I thought

I have always used speechreading cues to help me fill in the blanks of my residual hearing, but I didn't know to what extent until they were gone. Trips to the grocery store, the doctor, or an outdoor restaurant have become increasingly challenging with everyone's face hidden. Asking people to face me when talking to me, one of my go-to strategies, is no longer effective. I never expected to long for the days when only facial hair was the barrier between me and the information carried by someone’s lip movements and facial expressions.

With only my residual hearing available (boosted by my hearing aids, of course), I feel awkward and ill at ease when running errands or trying to socialize. Keeping six feet apart only adds to the discomfort, as this distance is often the outer limit of usefulness for many hearing devices.

Everyone’s hearing loss is different

Masks do more than block speechreading cues; they also muffle sound, especially higher-pitched sounds critical for speech understanding. A recent study showed that sound dampening effects vary significantly by type of mask. Surgical masks had the least impact, blocking only 5 dB of sound, while clear masks, popular with people with hearing loss because they allow speechreading, block 12–14 dB, depending on the brand.

For people who rely on residual hearing to communicate more than speechreading, clear masks may actually make it harder to communicate. But if you are primarily a speech reader, they are of enormous benefit. The vast differences in how people experience hearing loss make it hard to find one solution that works for us all.

My hearing loss confidence has taken a hit

Hearing loss exhaustion is a common side effect of hearing loss. I describe it as the feeling at the end of the day that you cannot bear to interpret even one more sound. When you have hearing loss, understanding speech takes effort to combine the sounds that we hear, context clues, visual clues, and body language to determine what is being said. It's not easy, mainly because the conversation does not pause while doing all this mental processing. And then, you may need to reply!

The pandemic has only made this phenomenon worse, given the added strain of communicating with masks. The fear of not understanding adds to the exhaustion of each communication encounter — whether online or in person. My hearing loss confidence falters at times, but I am rebuilding it by embracing new technologies, including speech-to-text apps like Google's Live Transcribe (Android only) or Otter.ai.

Hearing loss is invisible

Most people take their hearing for granted, so they assume everyone else can hear too. Grocery check-out workers speak at a normal volume despite being masked and behind plexiglass, as do doctors and nurses, and almost everyone else. This is only natural given their life experience. And because hearing aids are small and hard to see, people may not realize we do not hear well unless we tell them.

Wearing a button or a pin declaring your hearing loss is an easy way to make your hearing loss more visible. Some people have even embroidered “Please speak louder” or “I am deaf” onto their masks. How we choose to let people know about our hearing loss is our choice, but we must do it. Self-identification is the first critical step toward better communication.

Self-advocacy is the key to success

Self-advocacy has always been the key to success with hearing loss, and it continues to be. Once we identify ourselves as a person with hearing loss, we must let others know the specific things they can do to help us understand. The more detailed we are, the higher the chances are for successful communication. Making our requests with a smile, even one hidden behind a mask, is more likely to get results. Everyone is struggling in these challenging times. When we ask for what we need with kindness, there is a much higher likelihood the person will do as we ask.

Shari Eberts is a hearing health advocate, writer, speaker, and avid Bikram yogi. She is the founder of LivingWithHearingLoss.com, a blog and online community for people living with hearing loss and tinnitus. She has an adult-onset genetic hearing loss and hopes that by sharing her story, she will help others to live more peacefully with their own hearing issues.

Shari serves on the Board of Hearing Loss Association of America (www.hearingloss.org) and is the former Board Chair of Hearing Health Foundation (www.hhf.org). She serves as Lead Patient Advocate and Co-Lead of the Stakeholder Advisory Team for the PCORI study "Addressing the Clinical Dilemma and Patient Preference for Unilateral versus Bilateral Hearing Aids.

40 years Post-Op: Rosaline's Story

joanne — Wed, 19 Jan 2022 23:51:43 +0000

40 years Post-Op: Rosaline's Story joanne Wed, 01/19/2022 - 18:51

Rosaline Christensen was 39 years old when her AN was diagnosed. This is an excerpt from her memoir "Walk"

Rosaline Christensen

My husband Casey and I were out for an evening walk when I felt a sharp pain in my left ear. The next day I made an appointment with an ENT. He said, “You could have an acoustic neuroma. Come back in six months.” I went into denial. No way! Foolishly, I didn’t go back for more than a year and when I finally got there, he confirmed his earlier suspicion that it was indeed an acoustic neuroma. He referred me to Dr. Griesdale, a neurosurgeon at St. Paul’s Hospital in Vancouver, B.C. (Dr. Griesdale passed away in 2010)

I was thirty-nine years old, stood five feet four inches tall, weighed one hundred and twenty-five pounds, had blonde hair, and hazel eyes. Some people would say my smile was infectious and that my whole face lit up when I smiled. This changed after surgery. Instead, people looked away, or down at the ground, pretending they didn’t see my crooked face. A few asked if I’d had a stroke.

Dr. Griesdale greeted us at the door with a warm handshake and later said he too was thirty-nine years old. I had imagined a neurosurgeon as being old. Instead, his stature was youthful and sturdy, instead of grey or balding hair, it was brown, nicely cropped, and curly. He pointed with a pointer stick to the CT scan that hung on the screen behind his desk. There was a lighter image, in the shape of a golf ball, hovering above the brain. He said, “See it there? What you have is an Acoustic Neuroma. It’s about three and a half centimeters in diameter. It’s growing on the eighth cranial nerve and it touches the seventh nerve.”

He explained there were two options: one was to leave it and let it grow, the other was to surgically remove it, then he quickly added, “YOU have no choice but to opt for the surgery because you have a two-year-old daughter at home. If you let it grow, you could become incapacitated.” He said, “The surgery is lengthy and delicate, anywhere from twelve to twenty- four hours, and because they are so long I only do them on Mondays and Wednesdays. We WILL sever the eighth nerve and as a result, you will lose your hearing in the left ear. There is a fifty percent chance the seventh nerve will be damaged causing permanent facial paralysis.”

I had no comprehension of the loss and change involved in having unilateral hearing and facial paralysis. He neglected to mention possible residual effects of cognitive, vestibular, and left eye damage.

Unshaken and to my later embarrassment, I asked, “Will I have to have my head shaved?”

He said, “yes, your head will have to be shaved, but I’ll do it personally when you are under anesthetic.” I replied, “Thanks, and I’d like to have it done on a Wednesday, just in case you have a weekend party.” How cheeky of me!

Casey and I went down the elevator to the sidewalk, we silently walked to the car. I looked up through the tall buildings to the sky above. I felt like a tiny speck in a very big universe. We said nothing until midway home when I looked over to where he sat in the driver’s seat and with tears in my eyes, I said, “I guess it’s malignant.” I’d never heard the word tumour unless it referred to cancer. The color drained from Casey’s face, his chin quivered as he said, “I don’t think so. I will give Dr. Griesdale a call in the morning and ask.” It was benign.

The night before surgery, I was very nervous. Dr. Griesdale came into my room and sat at the end of my bed. He went over the procedure and reassured me he would shave my head in the morning after I was asleep. I bathed as instructed, and as I lay in bed I reached for the Bible in the bedside stand. I thumbed through the pages until I settled on a verse, Isaiah 40:31 - “They that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; they shall walk, and not faint.”

The next morning a nurse came into my room and said, “It’s time.” She transferred me from my bed onto a stretcher, and wheeled me to the operating room door, and left me there. I lay alone and waiting. I tightly clutched a brown washcloth to my chest like my security blanket. Soon they wheeled the stretcher under bright lights and transferred me onto the operating room table. People dressed in green were scurrying about. Someone said, “You’ll feel a prick as I start the anesthetic.” “Now, start counting from one to one hundred.” I think I got to eleven . . .

My childhood friend Lila came to visit me in intensive care, and as always, the essence of our friendship was laughter. My left eyelid hung wide open and didn’t blink. Without tear production, it was very dry and very painful. I held my hand over my eye. Lila grabbed a damp washcloth and plopped it on my eye. It kept falling off to the side, she wrapped it around my nose saying, “There, now that’s putting that big nose of yours to use.” We laughed.

It was October 7, 1981, I had a fifteen-and-one-half hour surgery. It was autumn, and the leaves were changing color. The landscape was changing and so was I. The lengthy surgery and long recovery left me with significant changes. It had a huge effect on me and my family. My children lost the mother as they knew her. My husband lost the wife he married. It was like a death that none of us were ready for. Grief never occurred because I was still alive.

The transformation pushed me to face the truth of an unhappy marriage. Eleven months after surgery, my twenty-plus-year marriage came to an end. My recovery took two years after which I took up the challenge of going to university and getting myself into the workforce as a pre-school teacher. I’d been an at-home mother for over twenty years. I could have gone back to work in the hospital where I worked before having children. The personnel officer said there was work for me, but I knew my cognitive ability was not what it was before surgery. I chose not to accept her honourable offer.

Now, forty years later I still struggle with the severe dry left eye, and visual memory loss. Frequently forgetting words and where I’ve left things. Keeping a writing pad near at hand, and writing things down helps. Leaving visual markers, here and there, is helpful. Often when I would be madly searching for an item my daughter would giggle and say, “I guess the cat took it.”

When I worked with children, one day a little boy was sitting on my knee, he looked up at me and said, “Why do you wear an ear-ring in that ear when it’s broken?” I immediately took that earring out. The children henceforth came to the side with the earring, the side that in children’s terms, the ear that worked, my hearing ear.

A favorite quote from a favorite person of mine – M.K. Gandhi: “I do not believe India to be helpless...I do not believe myself to be a helpless creature...Strength does not come from physical capacity. It comes from an indomitable will.” Yes, I had an indomitable will.

My eldest son’s wise words to me were, “Mum, your willfulness needs to become willingness”. Thank you, son, thus I learned to let go, let go, and let go of my willfulness, and became willing to accept my limitations along with my strengths.

If I were to offer words of inspiration they would be: Believe in yourself and the universe and keep putting one foot in front of the other even if you wobble when you walk.

If I were to choose a word to share it would be - ‘remember’. Remember our life lessons, remember gratitude, and remember love.

“Life is our teacher. Love is the answer.” R.F.C. © February 2021

www.expressionsbyrosaline.com

Rosaline lives with her P.A.D.S. (Pacific Assistance Dog Society) hearing dog. She believes we connect through story and through story we do not feel alone. In retirement years it seems a natural progression for her to transition into writing. She hopes that writing and sharing her life story, “WALK” will give others encouragement and hope.

facial paralysis

hearing

surgery

Tumour of Opportunity: Brittany's Story

joanne — Mon, 30 Aug 2021 21:28:20 +0000

Tumour of Opportunity: Brittany's Story joanne Mon, 08/30/2021 - 17:28

Brittany Blanchard was only 25-years-old when she was diagnosed with an AN. She used her experience to her advantage and is now a Hearing Instrument Specialist.

Brittany Blanchard

In early 2017, I had never heard of an acoustic neuroma, nor considered that one day I would be having brain surgery. By the end of 2017, I was living a totally different life! This is the story of how a tumour, which almost stole my life, instead ended up illuminating my path to success.

In January 2017, while watching TV, I suddenly realized, I think I’m losing the hearing in my left ear. With that ear on a pillow, I was able to hear well; however, with my right ear on the pillow, I was unable to hear any sound on the TV. Concerned, I spoke to the only person I knew who wore hearing aids. She told me about a nearby clinic where I could have my hearing tested . . . I was only 25-years-old!

A few weeks later, I started having tinnitus in the left ear, so I scheduled a hearing assessment at the clinic. It was almost two months since I first noticed my hearing loss, and three weeks since the unilateral tinnitus first began. Upon filling out the case history form, I came across a question about vertigo, something I had developed about five years prior, but never looked into as it was so mild. Seeing it on a form for a hearing test, I found both intriguing and disconcerting.

The results revealed normal hearing in my right ear, with a mild loss in the high frequencies, and a mild hearing loss in the left ear, with a severe loss in the high frequencies. I was then referred to an ENT, who retested my hearing. As there was further decline, the ENT ordered an MRI. During the MRI, they pulled me out and said they had to inject me with dye so they could see more information in my brain. This is when I knew something was really wrong.

Three days after my MRI, I learned that I had a very large acoustic neuroma and required brain surgery. The ENT referred me to Dr. Izukawa, a neurosurgeon in Mississauga, and to Dr. Joseph Chen, ENT surgeon. I had my first appointment with Dr. Izukawa in August 2017. He showed me and my parents the MRI images revealing my 4.5 cm tumour, which was crushing my brain, bending my brainstem, and pressing on my optic nerves. He told us that although this tumour is benign in nature, its sheer size was threatening to snap my brainstem. To put into perspective just how large this tumour was, it was about a quarter of the size of my brain.

I met Dr. Chen for the first time ten days before the surgery, in October 2017. Having lived with the knowledge of my tumour for a few months, I had had a chance to tell my family and friends about it. Naturally, they wanted to discuss it extensively and the word “tumour” became a source of panic in itself. As a result, I decided to give it the least threatening name I could think of, Winnifred!

Dr. Chen informed my mother and I that he would be severing my 8th nerve on the left side, and I would become permanently 100% deaf in that ear. Due to the size of my tumour, there was also an extremely high chance that he would have to sacrifice my 7th nerve, which would result in the left half of my face being paralyzed. As a now 26-year-old woman, I was devastated, terrified, and lost. Although I was surrounded by love, I felt alone and isolated. I had had reconstructive knee surgery a year prior and comforted myself by thinking, “at least it’s not brain surgery!”. And then it was.

The morning of the surgery, I woke up feeling an almost unsettling sense of calm, likely because, for about three months, I was afraid to sleep because I did not know if I would wake up or not. My dad picked me and my boyfriend up at 6 a.m. to drive us to the hospital where we met my mom and grandmother. Walking to the operating table was surreal. As I climbed onto it, I couldn’t help but think, “this is brain surgery . . . I might not leave this table alive.” My wonderful little support team patiently waited 12 hours while I had the tumour removed.

Although I was dizzy, no longer had hearing in my left ear, the left side of my face was paralyzed and my vision was impacted, I was grateful for the surgeons and the nurses who took care of me.

About six months post-op, I was fitted with a CROS system, and my life changed again. I fell so deeply in love with my hearing aids that, within a few weeks of wearing them, I registered for college to become a Hearing Instrument Specialist. I knew that I had to help other people. Just ten months after surgery, I was sitting in a classroom. Still experiencing dizziness, and having to undergo surgery to correct vision complications, I had the feeling that I may have rushed myself. Nevertheless, I knew I had made the right decision because helping people has always been a passion of mine, but I had not been able to decide on a career . . . until now.

I graduated in April 2020, completed my internship and passed the International Licensing Exam in 2021. I am now a certified Hearing Instrument Specialist, on top of being an acoustic neuroma survivor. My next goal is to support other young individuals diagnosed with this tumour and ensure that they never feel they have to face this diagnosis alone.

My acoustic neuroma threatened my life but, with the help of my family, friends, and phenomenal surgeons, I overcame it and have now been tumour-free for four years! It is extremely easy to feel alone when you have an acoustic neuroma, so it is fantastic that there is an entire community for support within ANAC!

facial paralysis

hearing

tinnitus

Docs Team Up for a Kid: Ben's Story

joanne — Wed, 05 May 2021 15:41:28 +0000

Docs Team Up for a Kid: Ben's Story joanne Wed, 05/05/2021 - 11:41

Ben was only 15 years old when his hearing loss was discovered to be an AN.

Ben Espey with Tessa

It all started in my Grade 9 homeroom classroom. The teacher didn’t mind if we listened to music so I had both my headphones in but realized that I couldn’t hear much of anything in my right ear. I assumed that my right headphone must be broken. For the next few months, I only ever used my left headphone. I finally realized that it wasn’t a problem with the headphone at all, but with my actual ear. I didn’t tell my parents right away because I didn’t think it was a big deal; I thought that my ear might just be plugged because of a cold or allergies. Boy was I wrong!

After a few weeks I finally told my parents about my hearing issues. We went to my family doctor to see what was the problem, thinking it would just be a wax build up. The doctor looked in my ear but couldn't see any visible problems. He suggested that I go for a hearing test and also referred me to an ENT specialist. The hearing test didn’t go too well and the ENT ended up sending me for an MRI. The results revealed the problem: a 2.5 cm mass on my acoustic nerve. An acoustic neuroma was a term I’d never heard before but one I would become far too familiar with. I just kept thinking, “How can this be possible? I’m a kid!” My parents and I did a lot of research about my condition and found ANAC, which turned out to be a huge support.

Since I was still a minor, I was sent to the Hospital for Sick Children in Toronto (SickKids), where I stayed for a few nights. During my stay at SickKids, they ran different tests and monitored me to confirm the diagnosis. This was very weird for me as I felt completely normal and like myself. The doctors explained that although the tumour was benign, it was extremely rare in children and could be very serious. After a lengthy discussion with the physicians, myself and my family, my doctors recommended waiting and monitoring what happens, as this type of tumour is slow growing. Every three months, I would go to SickKids for a series of tests, which included an MRI and a hearing test.

After my mom reached out to ANAC, its executive director Carole Humphries suggested she attend the World of a Vestibular Schwannoma Symposium in 2018, where she would have an opportunity to approach Toronto Western Hospital’s Dr. Gelareh Zadeh in person, one mother to another. The first request had been turned down based on the policy regarding care for children.

As a result, Dr. Zadeh, called by some a rock star in neurosurgery now head of neurosurgery at the University Health Network and Director of Krembil Brain Institute, was brought on to work with a team of doctors at SickKids. I felt very lucky to have so many experts taking care of me. The tumour continued to grow but I was having no symptoms other than hearing loss. Being an active 15-year-old kid, I went on with my life: going to school, playing hockey and hanging out with friends. Over the years, I never felt like this tumour was holding me back from doing anything; it was just something that I lived with. My hearing never got much worse and I just learned to deal with it. The scary part was that I knew at some point I would need to get surgery to remove this tumour but I didn’t know exactly when.

It wasn’t until I was seventeen that the doctors at SickKids Hospital and Toronto Western Hospital agreed that we should go ahead with surgery. I was very nervous in the weeks leading up to my surgery but the doctors and my family were very reassuring. The uncertainty of what would happen post operatively – was what scared me the most. I had come to terms with the fact that I would most likely lose some if not all of my hearing in my right ear but there were many other complications that could occur.

On the day of the surgery, I tried to stay as calm and level-headed as possible. I walked in through the hospital doors with my head held high, ready for anything. On the inside I was freaking out. Once I was in the operating room, the surgeons and nurses were very friendly and kind. I remember them asking me what I would be doing at that moment if I wasn’t at the hospital. I said I would probably be out golfing with friends. The conversations that I had with the nurses in the minutes leading up to my surgery comforted me and reassured me that I was in the right place to get this surgery done. Within ten minutes, I was asleep.

For me it was a very quick procedure; I went to sleep, then woke up. ln reality, it took close to ten hours. I woke up in the ICU and was asked to perform different exercises with my face to see if I had lost any facial function. Luckily, I had not. At this point I could barely keep my eyes open; I was so tired. I was taken to the recovery room, where my mom was waiting for me. Since my surgery was done during the Covid-19 pandemic, I was allowed only one visitor at a time. Because we live in Uxbridge, my parents took time off work and booked a hotel close to the hospital so they could be there at this very important time in my life. This meant that my mom and dad were able to take shifts to be with me. They would each spend 24 hours with me and then switch over.

After a day in the recovery room, I was up and walking, I didn’t have much energy at that point and could only stay awake for a few hours at a time. I was discharged from the hospital after only three days and went back to my home. I wasn’t able to do much physically for about a month. But now almost three months since my surgery, I’m feeling almost 100 percent except for my loss of hearing. I’m “learning to live with it.”

I am going to school, working and going to be able to get back on the ice to play hockey in 2021. I am getting ready to go to university this coming year and hope to attain a business degree. I just had another MRI done at Markham Stouffville Hospital and had a consultation with Dr. Zadeh over the phone. She said that it is looking very good and healing properly. From now on, I will only need to get MRIs done every six months to a year for the time being.

I am just very thankful for all the doctors and nurses that helped make this process as good as it could be, and, of course, to my parents for going the extra mile to support me. I was very lucky and blessed to come out of this surgery with very few issues. What I have learned through this process is that by staying positive and surrounding yourself with positive people, you can get through anything.

Shelley's Story: A Journey Toward an Acoustic Neuroma Treatment Plan

joanne — Wed, 05 May 2021 01:58:25 +0000

Shelley's Story: A Journey Toward an Acoustic Neuroma Treatment Plan joanne Tue, 05/04/2021 - 21:58

Shelley Lacroix is an Ottawa resident who explored treatment options available throughout the world.

Shelley Lacroix

My story began with a simple ear ache that would not go away. After trying an off-the-shelf antibiotic and, subsequently, a cortisone prescription to no success, I was referred to the ENT clinic at the hospital.

The doctor at the clinic told me that I had age-related hearing loss. I had a hard time accepting this. My hearing up to that point had not been an issue. My tests showed 60% hearing in one ear and 80% in the other with 100% speech recognition. On the off-chance that my condition was attributable to sudden hearing loss, my doctor treated me with four intratympanic dexamethasone injections in my middle ear. I assure you that was not a pleasant experience!

I continued to experience pressure and aural fullness in my ear. At times, it felt like something was pushing against my tympanic membrane. I was then prescribed a course of Prednisone which led to no change in my condition. At this point, another doctor in the clinic referred me for a contrast MRI. In spite of the doctor’s request, the technician refused to give me contrast. As a result, I had to return for a second MRI after the first one revealed there was indeed a problem!

My contrast MRI report indicated that I had an acoustic neuroma (AN) measuring approximately 2 x 1.8 x 1.4 cm, approximately the size of a pecan half. I was relieved to learn that it was benign. During a video-conference with an ENT surgeon and neurosurgeon, the ENT surgeon informed me that I was not a suitable candidate for middle fossa surgery because my acoustic neuroma was too big.

Alternatively, the neurosurgeon proposed translabyrinthine surgery which would result in complete hearing loss, a severed vestibular nerve and could lead to partial facial paralysis or numbness and the possibility of a permanent or temporary palsy (droopy eye and droopy lip). Who wants to gamble with that I thought?

I bought myself time by agreeing to accept a “wait and see” approach in monitoring the growth of my AN. I made it my personal goal to learn as much as I could on the topic of ANs and treatments available in Europe, Canada and the USA. I am glad that I did this as soon as possible as I discovered that my treatment options would become limited if I waited too long to address my condition.

I read journal articles from the Journal of Ontology and Neurotology including a study about Aspirin halting the growth of sporadic vestibular schwannomas. I came across a study from Harvard where stem cells had been injected in the cochlea of mice to restore cilia and hearing. Unfortunately, no human trials have been undertaken.

I also explored whether the palsy could be surgically treated and consulted two independent doctors. The otolaryngologist, specialist in head and neck surgery, told me about the problems related to droopy mouth surgery and facial paralysis, and recommended the CyberKnife as the best course of treatment. I also consulted an ophthalmologist who said it was impossible to correct a drooping eye and achieve a natural look.

After receiving this information, I proceeded to conduct extensive research to explore alternative treatments. Through my research, I found out that Munich, Germany, has the most current CyberKnife S7. According to Medical Device News Magazine, the S7 offers “advanced precision, real time artificial intelligence, motion tracking and delivers radiation treatment in as little as 15 minutes”. I contemplated flying to Munich for treatment but then...COVID made things very complicated to do that safely. Along the way, I learned that Canada doesn’t have a CyberKnife S7 (2020 generation) and my city has the CyberKnife VSI (2009 generation). Also, I discovered that Hamilton and Montreal have CyberKnife M6 (2012).

Determined to find a better solution, I explored various US options in California, Colorado, Florida, Connecticut, and Pennsylvania, among others. During this research, I discovered a link to the American Acoustic Neuroma Association (ANA) and read the information provided by this group. By this time, my husband engaged in my research and stumbled upon the Acoustic Neuroma Association of Canada (ANAC). What a revelation! I became a member and immediately received a phone call from Carole Humphries, Executive Director, who offered both research and evidence-based data. The publications answered most of my questions, but not all. Within 24 hours, Carole connected me with dozens of people across Canada who shared their experiences. This made me realize I was not the only one facing this rare tumour.

It was through ANAC that I learned about Gamma Knife. Carole indicated that Gamma Knife was an alternative to CyberKnife. It was then that I realized that I had been far too focused on CyberKnife.

From that point on, I channelled my energy into exploring the pros and cons of both CyberKnife and Gamma Knife. From the University of Virginia Medical School website, I learned that Gamma Knife is far less invasive than surgery, uses 100X less radiation than CyberKnife and has a radiologic accuracy better than 0.3 mm. The Rocky Mountain Gamma Knife Centre website in Colorado indicated that Gamma Knife has a radiological accuracy down to 0.15 and that Gamma Knife Perfexion is safer because of its tissue-sparing characteristics, and its headframe prevents patient movement during treatment. According to the Mayo Clinic website, Gamma Knife is 95-97% effective and requires only one session to treat an acoustic neuroma. I gained insights

from the Journal of Neurosurgery about long-term outcomes following Gamma Knife radiosurgery (GKRS). The low incidence of developing hydrocephalus after GKRS and the preservation of hearing 15 years post Gamma Knife radiosurgery confirmed that Gamma Knife was the right option for me.

According to the Orange County CyberKnife and Radiation Oncology Centre website in California, the CyberKnife requires multiple treatments, is 90% effective, and could damage the outer targeted area. The odds associated with Gamma Knife were in my favour.

After completing the bulk of my research, I requested that my family doctor make a referral to Toronto Western Hospital. I compiled all of the paperwork that she required for the referral (i.e., audiology testing, MRI reports, MRI CD, medical history) to facilitate my Dr.’s task and expedite the referral process to Dr. Zadeh, head of neurosurgery of the University Health Network.

Dr Zadeh offered me two treatment options during a telephone meeting: 1) Rectosigmoid surgery which would preserve my existing hearing in combination with Gamma Knife six months post surgery to treat the remaining tumour; or, 2) Gamma Knife. I opted for the least invasive surgery, and I am currently awaiting word from the Gamma Knife Clinic for the date of my treatment.

During my discussion with Dr Zadeh at Toronto Western Hospital, I was comforted to know that the hospital staff focuses on the quality of life of the patient and that their goals are congruent with those of the patient. I knew my goals and shared them with the surgeon in order to ensure quality of life. My goals were simple: preserve my hearing, preserve my facial nerves, and preserve my vestibular nerve. From my standpoint, any treatment satisfying these goals would allow me to live my life to the fullest.

My journey made me wonder how many people out there would have relied on one opinion and had the translabyrinthine surgery with its inherent risks, as proposed by the first surgeon. I was thankful that I connected with ANAC and was able to be guided in the right direction to a team of leading neurosurgeons and researchers in the area of acoustic neuromas and brain surgery. It is important for us to realize that perhaps surgeons recommend surgery because that is their specialty. I was so pleased to learn that Dr. Zadeh and her team do both microsurgery, and stereotactic radiation surgery based on the individual needs of the patient and the size of the neuroma. I was happy that I was given alternatives to my treatment plan.

To close off, I would like to leave you with this final thought. It is important to make an informed decision about any recommended medical treatment plan.

You, alone, control the journey and must research your condition and critically examine all the options available. It is critical to formulate precise questions so that the experts can fill in your knowledge gaps. Once you are confident with your understanding of your condition and possible treatments and their associated risks, you can then, if given a choice, select a treatment plan that satisfies your goals.

The Silver Lining: Nicole's Journey with an AN

joanne — Fri, 04 Dec 2020 15:48:32 +0000

The Silver Lining: Nicole's Journey with an AN joanne Fri, 12/04/2020 - 10:48

Nicole Poulin is a Retired Registered Nurse living in Hawkesbury, Ontario with her two daughters.

Nicole Poulin

I was asked to share my journey with an acoustic neuroma and I agreed because if this could only help one person, it was totally worth it. First, let me share with you a little bit about me. I am a single mom of two beautiful daughters I adopted from China who are now both university students. They are my pride and joy and cannot imagine my life without them.

I worked as a registered nurse for 39 years in different departments such as ICU, and dialysis followed by 5 years, in a diabetic clinic of a hospital in my hometown in Eastern Ontario. I was still working when I started my AN journey in July 2017.

I was enjoying a beautiful summer with my girls and friends and by mid-July I started feeling a numbness on the right side of my tongue. I had been to the dentist a few weeks before so I thought it was probably related to the freezing for the tooth repair. I was feeling good except for headaches, but this wasn’t unusual to me so I thought nothing of it. A few more weeks went by and the numbness became more pronounced. I consulted my dentist as the numbness was on the same side the freezing was done. After some x-ray and exams, the dentist told me he did not think it had anything to do with the freezing. I still believed nothing serious was going on, a s I was feeling good except for the numbness. For a few months, I had noticed some slight balance issues when I was walking to work but I had not related that to the numbness. I became concerned at the end of August, when the right side of my face also started to be numb and there was a feeling of fullness in my right ear.

I had been planning for retirement, so at the end of August, I notified human resources that I was officially retiring January 1st 2018 and taking the month of December for holidays. I was so excited about the last few months left at work after 39 years. Suddenly, one morning, getting ready for work I started having tinnitus in my right ear. At that moment, I knew it was time to call my doctor and after listening to my symptoms, he wanted to see me at the end of my shift. My wonderful family doctor that I had known for the past 30 some years looked quite concerned and asked for an urgent MRI and audiogram. Since the beginning of the tinnitus I had started to be worried and now it was getting worse by the minute.

The next day, I called for an audiogram appointment. They had a cancellation that morning and they offered me the spot. As soon as the audiogram was done, the audiologist told me I needed to see a specialist asap. I came out of that office thinking the worst. Back in my department at work, I was in tears when I called one of my best friends at the hospital. After we hung up she happened to see two doctors who I had worked with before and they arranged for me to see an ENT that same day.

I was very anxious. My MRI which was scheduled for Sunday September the 24th. I am sure that all of you know it can be quite a claustrophobic experience. As I was leaving the x-ray department, the technician looked at me and in a very soft voice she said, ‘’ Good luck madam, your doctor will get the result within a week.’’ Right then I had a feeling it wasn’t good news. The next day, I went to work and in the afternoon my doctor called and asked me to drop in at the office at the end of my shift. I was so anxious but managed to finish my work, and got my charts ready for the next day not knowing that would be my last day at work. I called my sister and asked her to come with me to my appointment as I knew I needed support. As I entered my doctor’s office, being the last appointment of the day, it was very quiet. The lights had been dimmed and as I sat in the waiting room, I told my sister, that this was not normal. The secretary and nurse I had known for many years were also avoiding eye contact with me. After a few minutes, my doctor, not the nurse, came to get me and I knew it was not going to be good news. I had shared many things with my doctor, we worked together, he helped me with the adoptions of both my girls and had always been very good to me and my family. He told me the MRI showed a brain tumour but he could not tell me what type of tumour at that time. He told me he would arrange for me to see a neurosurgeon in Ottawa, gave me a note for sick time for my work, and told me we would keep in touch.

Leaving the office, I was devastated. I tried very hard to calm down as it was time to go home to my youngest daughter. She could not see me like that as we were still not sure of the final diagnosis and I didn’t want to worry her too much. I will spare you the next few weeks where I had very bad days thinking the worst. I had a lot of support from my family and daughters but especially from my oldest daughter who was studying biology at university and said that all

my symptoms looked more like an acoustic neuroma, something I had never heard about before. Doing some personal research, I had hope. By now however, I had completely lost my hearing on the right side.

Finally, my appointment on October 2 with the neurosurgeon, Dr John Sinclair at the Ottawa Hospital arrived. I was so anxious waiting to see him because in a few minutes I could receive the worst news ever and my life would never be the same BUT it turned out to be one of the best days of the last few weeks. He was one of the most reassuring doctors and proceeded to tell me all about my tumour, which was most probably an acoustic neuroma. The tumour was approximately 3 cm and compressing my brainstem. He ordered an MRI with contrast. He indicated the need to proceed to surgery urgently due to the compression if the next test confirmed his diagnosis. He discussed radiosurgery but according to him, the tumour was too large and the compression of the brainstem was too severe. He indicated surgery would be done with facial nerve monitoring to protect the facial nerve function and that they would most probably have to leave a small residual tumour to protect my facial nerve.

Depending on the size of the remaining tumour and further MRI post-surgery there could be indication for radiosurgery called CyberKnife to make sure the remainder of the tumour would not grow back. I was told that I would most probably not regain my hearing, but believe it or not I left the office in a state of euphoria thinking I will get through this. I did not have a glioblastoma (cancerous tumour), something that had been on my mind for the past few weeks. I did not mind the surgery at that time, as there was a cure and I was so relieved. I called my girls, my family and friends and from that point on I felt positive about the whole thing. Life was good to me after all.

Within the next few days, I had another MRI with contrast, a scan, and I was back in Dr Sinclair’s office a week later; on the 19th of October to get the final diagnosis of a 3 cm vestibular schwannoma with compression on the brainstem. I was told the surgery would be booked within the next few weeks but to go to the emergency room if I ever got worse headaches, nausea and vomiting. I came home, got ready for the surgery, and spent time with friends and family.

Finally, on November 9th, I underwent surgery for eight hours. Everything went smoothly, 92% of the tumour was removed with no facial nerve damage. I spent the first 24 hours in an acute care recovery room. I was a little nauseated and the pain was well managed with the medications. I was transferred to an intensive care neuro floor for the next three days and things continued to improve. Six days post operatively I was discharged home.

The road to recovery went well. By January 2018, I officially became a retired nurse and I started to walk on a training track in my hometown to regain my strength. In late January, I got another

MRI and at my second post op follow up appointment, it was discussed that the CyberKnife radio treatment could be a good option for me to make sure the remaining tumour would not grow back. Six months after the surgery, on May 1, 2018, after more scans and a head mask molding done, I received a 45-minute CyberKnife treatment. I was a little apprehensive but the technician took her time explaining what was going to happen throughout the treatment. She was very reassuring. It was pain free, and time passed quickly as I was invited to select a movie to watch on the ceiling during the treatment. I experienced no side effects.

MRIs have been scheduled every 6 months since my surgery, and on my last one it showed the remaining tumour was now getting slightly smaller and I have graduated to once yearly. I cannot thank enough both my doctors for the great care I have received. I am now enjoying my retirement; life is really beautiful. The deafness on the right side is not a big problem for me at the moment so I have not yet looked into any kind of hearing aid. As time goes by, my balance is getting much better and I can say I feel like my own self again.

Bridging the Gap: Nick's Road to Enhanced Hearing

joanne — Fri, 15 May 2020 21:58:21 +0000

Bridging the Gap: Nick's Road to Enhanced Hearing joanne Fri, 05/15/2020 - 17:58

Nick Kucharew is an ANAC board member. He elected to have complete surgical removal of his tumour in 2013. Although he still experiences minor balance issues, Nick is grateful for the support he received from ANAC through his diagnosis and treatment.

Nick Kucharew

My story begins in 2011 when I discovered I had an acoustic neuroma. I suddenly lost my hearing in the right ear. Next came an MRI, appointments at Sunnybrook Hospital, and the decision to Wait and See . . .

In September 2014, I had surgery to remove the tumour using the translabyrinthine approach. The result, successful removal!!! However, this meant that my balance nerve* was also removed, and I was left with single-sided deafness [a necessary result of translab surgery].

Jump forward to early 2015: after researching various options to help with my lost hearing on the right side, I came across the Bonebridge Bone Conduction by Med-EL. The Bonebridge, an active bone conduction implant, is inserted under the skin on the tumour side of your head, and an external SAMBA audio processor is magnetically coupled to the implant’s coil.

How Does it Work?

In a person with normal hearing, sound vibrations are sent through the outer and middle parts of the ear and on to the inner ear.

If you have single-sided deafness like me, the BONEBRIDGE can pick up the sound vibrations on your bad side and send them through to your inner ear on the good side. This results in much-improved hearing on the damaged side.

The system consists of the SAMBA Audio Processor and a Bone Conduction Implant.

Click to see a video that illustrates how it works

The audio describes conductive or mixed hearing loss, which is where your outer (or middle ear) is damaged, but your inner ear to hearing nerve is intact. As I had single-sided deafness and my inner ear to the hearing nerve was not intact, sending the signal to the damaged side’s inner ear would not work. But it does work when sent to the inner ear of the “good side”, which has an intact inner ear to hearing nerve connection.

What Does This Mean for the Wearer?

The Pros

I would like to note the BONEBRIDGE Bone Conduction Implant surgery I had in 2015 was a quick one, about one hour. It went very well with no ill side effects.

I remember driving home with my wife, and we decided to stop for lunch at my favourite breakfast place. It was EXTREMELY noisy and normally that would have hurt and been intolerable. I sat there and could not believe how well I was handling the noise all around me. That is a most welcome benefit of the implant with an audio processor.

The other thing I noticed after months of wearing it was that I was not as tired by midday. As many of you know, when you are deaf on one side, trying to hear people talking and make out what they are saying is very tiring. It was significantly better with this device.

Also, the device attaches easily as it has a simple magnetic coupling, and the implant is completely under the skin, so no infections, irritation, and so forth. Batteries are about 25 cents apiece, last a week, and are easy to replace.

Finally, the audio processor can be upgraded. This is a particularly nice benefit as new features, better processing, etc., become available. Although the device is not perfect, it is comfortable, works well in picking up sounds and pretty good overall.

The Cons

The biggest downside I find is that while the Bonebridge picks up sound on my deaf side, the volume I get is perhaps 20% or so. I wish it were closer to the volume I hear on the good side.

Sometimes it has fallen off, even with the safety clip, and at a cost of approximately $5500, you do not want that happening too much!!

The audio processor is capable of using wireless and Bluetooth, but through another external device, the Siemens MiniTek. I found it worked well with some things such as a personal mic headset my wife wears and listening to the TV with a transmitter attached. But, all in all, it is more trouble than it is worth to continually set up the equipment to make it work. Needless to say, I don’t use it that way much anymore.

Wearing the device with hats is somewhat problematic as you must play with the fit of your hat, and usually, there is still some feedback, which can be a bit bothersome. You also need to be careful to not wear it into the shower, swimming, etc. I have got it wet on occasion and, fortunately, it held up quite well.

The Net Results

In summary, the Bonebridge has allowed me to handle day to day life much better. I am less tired, have better speech discrimination, and I’m much better able to handle noisy environments.

Note:

Determine what support is available for hearing devices in your province from an audiologist/hearing devices specialist.

More of Our Stories

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Hearing Aid Basics for Patients with an Acoustic Neuroma

admin — Fri, 15 May 2020 19:25:04 +0000

Hearing Aid Basics for Patients with an Acoustic Neuroma admin Fri, 05/15/2020 - 15:25

There are many things to keep in mind when looking into getting hearing devices. The duration and the severity of the hearing loss in the affected ear (the ear which has/had the acoustic neuroma), and in the non-affected ear, will influence your experience with amplification. The most important thing to keep in mind is that it always takes time to get used to amplified sound. It is quite common for certain environmental sounds (for example: water running in a sink, dishes clattering, papers rustling) and certain speech sounds (for example /S/ and /SH/) to sound louder and unnatural. You may find that amplified sound is too sharp or too tinny, that your own voice may sound loud or echo, and that familiar sounds in the environment may sound very different than before. It can take several weeks to several months of regularly using hearing aids for these sounds to become more normal.

This brings us to another important point; be patient with yourself and go at your own pace. Ideally, you would wear the hearing device most waking hours of the day, apart from when you are showering or going for a swim. However, every person is different - if you feel comfortable wearing the hearing device for 16 hours a day, that’s great! If you prefer to take it more slowly, you can gradually work your way up to a full day of wear. Try to wear the devices for at least six hours a day. You can always wear them in quieter environments to get familiar with the sound quality before wearing them in a more challenging environment, like a restaurant.

Even the best hearing aids are never going to sound as good as normal hearing. For most people with age-related hearing loss, their ears are like radios with the volume turned down - a hearing aid is like turning up the volume, the sound will be loud and have good clarity. For most patients with acoustic neuromas, their ears are like a radio with the volume turned down and the dial tuned slightly off-station. Just like a radio, there is some ‘fuzz’ or distortion. When a hearing aid brings the volume up, it is definitely easier to hear, but the quality of the sound isn’t perfect. Amplified sound coming from a hearing device cannot fix the damage in the ear and the nerve.

The ability to localize sounds (or determine where sounds are coming from), the ability to hear speech when there is background noise, and even the clarity of the sound can be impacted when there has been an acoustic neuroma or hearing loss from other causes. While hearing devices can make it easier to hear some sounds that were not heard before and easier to hear in more difficult environments, it is no replacement for a healthy auditory system. It is important to have realistic expectations when getting used to a new device.

Now let us look at the three different types of amplification available. Among the following types of amplification, there are different manufacturers, models and costs. All of these factors should be discussed with your audiologist when it comes time to make your decision.

Hearing aids
This is the type of amplification most people are familiar with. There are hearing aids that fit into your ear canal (invisible in the canal, completely in the canal, in the canal and in the ear styles) and others that sit behind your ear with a piece fitting in your ear canal (behind the ear or receiver in the canal styles). Depending on the degree of hearing loss and the clarity of speech in the affected ear (among other things) as well as the degree of hearing loss in the non-affected ear, either one or two hearing aids may be recommended.
Masking devices
Approximately 60%-70% of people with tinnitus (perception of ringing, buzzing or other noises in the ear) will notice some improvement in their tinnitus when wearing a hearing aid. However, if a hearing aid alone is not enough to manage the tinnitus, a masking device can help. Some hearing aids have a masking feature which essentially will produce a soft sound (white noise, water noise, chimes etc.) to help distract your brain from the tinnitus. Not all hearing aids have this masking feature available. If your tinnitus is bothersome, this is something to discuss with your audiologist when choosing which type of device will be best suited for you.
CROS and Bi-CROS
These devices are used when the affected ear isn’t a good candidate for a hearing aid. The amount of hearing loss or remaining clarity may be so poor that a hearing aid on that ear wouldn’t help you understand speech. A microphone on the poorer ear picks up the sound and sends it over to a hearing aid on your better ear. A CROS is used when the better ear has normal hearing. A biCROS is used when the better ear has some hearing loss and needs some additional amplification. CROS and biCROS systems sometimes take a bit of time to learn to localize sounds, as the brain has to retrain itself hearing all of the sounds coming from the better ear.

Most hearing aids have options for rechargeable batteries, streaming calls and music from your smartphone, and acting as a wireless headset for your television. These are all things to discuss with your hearing care professional.

Some people who are not successful with hearing aids or CROS/biCROS systems are candidates for other devices - such as a bone-anchored hearing aid (BAHA) or a cochlear implant (CI).

This is not something that you will be doing alone. Make sure to find a hearing care professional that you feel comfortable working with. There are usually a few visits needed to get things sounding right. It is also important to educate your family, friends and co-workers. Even if you have done everything up to this point perfectly, you will still have difficulty understanding speech if the people around you do not communicate correctly.

In all environments, but especially in challenging ones (for example restaurants, parties and family gatherings) make sure everyone is using the correct communication strategies. Ensure that the person talking to you gets your attention before they begin speaking, that they are looking at you and that you are looking at them. Someone with no formal training can still get some benefit from lip reading. Ask people to speak slowly, clearly and loudly (without shouting as that can make it harder to understand what is being said).

If you need to have someone repeat themselves, you can ask them to rephrase rather than repeat. You are doing your part by wearing a hearing aid - they need to do their part by having good communication habits and understanding that hearing aids don’t give you normal hearing. Lastly, be patient with your family, friends and co-workers, as they may need some time to learn better communication habits.

Christine Kennedy grew up on Vancouver Island, where she obtained her Bachelor of Science in Neuropsychology at Vancouver Island University. She moved to Ottawa to pursue her Master's in Health Science in Audiology at the University of Ottawa.

Emily Dawber graduated from Queen's University with a BAH in Psychology and completed her Master’s of Clinical Science in Audiology at the University of Western Ontario.

Christine and Emily have both been with Costco since 2015, currently practising in the Ottawa area.

hearing

What a Difference a Day Makes! Ruth's AN Journey

joanne — Wed, 05 Dec 2018 22:08:08 +0000

What a Difference a Day Makes! Ruth's AN Journey joanne Wed, 12/05/2018 - 17:08

Ruth Toskas was in her 40s when she was diagnosed with a large acoustic neuroma.

Ruth Toskas

What a difference a day makes! I have heard this little saying many times in my young 49 years of age and I can certainly hum the tune as Dinah Washington croons these words in my head, but I didn’t realize the impact these few little words and meaning would have on me, until this year. More to come on this later in my story . . .

I awoke one night in September 2016 with a loud ringing in my ear and that’s where it all started. I won’t bore you with all the details of my various doctors’ appointments, hearing tests and ultimately the confirming MRI, but fast forward to February 2017, a Valentine’s Day that I will never forget, where I was diagnosed with a left-sided acoustic neuroma. I couldn’t believe the words I heard from the ENT that I have a “rare brain tumour”. I have two young daughters and they were my first initial worry and how this news and outcome would affect my family. I was devastated. I tried to carry on every day as normal as possible but at the end of the working day and when my family went to sleep, that’s when I would really think about it and I admit, I cried myself to sleep many nights.

My husband, Demetrios, and I spent a lot of time researching what an acoustic neuroma is and by the time I initially saw a neurosurgeon in my home town of Hamilton, Ontario, I was prepared with a list of questions. Unfortunately, my appointment did not go as well as I had hoped, and I was left with more questions. I did however find out that my tumour was on the larger side, being almost 3 cm, and that my brainstem was being compressed.

I continued reading and researching everything I could about my AN. I reached out to close family and friends and those in the know in professional circles. I had decided that I also wanted to explore other options such as advanced radiation techniques. After a couple of meetings, including a much appreciated one by a close connection, my quest eventually led me to Dr. G. Zadeh’s name at Toronto Western. I politely insisted for a referral from my family doctor who gracefully indulged my request to see Dr. Zadeh. I had also found the Acoustic Neuroma Association website and sent a quick email. I immediately received a call from Carole Humphries and felt, for the first time, that I was not the only person in the world dealing with this kind of tumour.

I met with Dr. Zadeh and knew immediately she was the doctor I was looking for. Dr. Zadeh exuded competence and confidence in a humble way and she understood our concerns and addressed them in a graceful, straight-forward, sincere manner. Dr. Zadeh‘s wealth of experience and knowledge and her calmness was exactly what I needed. I knew surgery, as scary as it seemed, was probably going to be the road I needed to take but, in the meantime, I still had a couple of appointments booked to explore radiation options. Ultimately, after weighing all the options and because of the size and location of the tumour, radiation was not the right choice for me. After meeting with Dr. Zadeh again, it was agreed that surgery was the best option for me. I waited for the date and surgery was scheduled for February 2018.

Almost a year to the day that I was diagnosed, the surgery day was upon me. For almost a year, I had tried to stay as positive as I could but there were days that the worry, stress and anxiety got the better of me. Although he hid it from me, I knew it took a toll on my husband, but he remained supportive and reassuring. I did, however, surprise myself that I was relatively calm the morning of surgery. I know that had to do with the fact that I was very confident in my neurosurgeon, Dr. Zadeh, and her very skilled surgical team, plus I had done everything I could do to prepare myself and be ready for this day. With my husband by my side, I was prepped to go and then rolled into the operating room.

The surgery was very successful. It was a long, almost 10-hour, surgery. When they woke me up in the operating room, I was told to smile and wink and told all looked good. I was taken to the ICU to be monitored. I had many tubes and wires hooked up and then of course the nausea set in. Needless to say, it was an incredibly rough night.

Well, back to the beginning of my story and what did I mean by that little phrase? The next morning, after only a couple hours of sleep, I felt different. Sure, there was the expected recovery, the risk of brain fluid leakage, which did occur, and other risks which did not. What I really mean by that is it was a new day, surgery was now done and all that worry, stress and anxiety I had leading up to the surgery, was now behind me. So yes, what a difference a day makes.

I lost my hearing on my left side completely and the tinnitus is still as annoying as ever. There is also some residual tumour which we will keep an eye on with periodic MRIs and follow ups. These of course are things that I expected and was prepared for, so I feel so very grateful.

I am still adjusting to a world of single-sided deafness and the fatigue that still hits me after I have taken on too much is still a gentle reminder of what I have been through.

My husband has been my biggest advocate and supporter during this journey. I can’t thank him enough and am blessed to have him by my side. We are also very proud of our young daughters as they handled this with such grace and positivity. We are all adjusting to the new us. As many have said before me, the love and support from family and great friends is truly a blessing. I have also made some new friends at the AN support group throughout this journey and they too have similar stories to share. They have given me great advice and insight with their journeys which

was appreciated, as it has helped me understand my journey and recovery. I am honoured to also be there to lend an ear (well at least my one good functioning ear) to newly diagnosed patients and hope sharing my story with them can help in some small way.

If there is one thought I can share with anyone going through this, it is this: Stay positive and surround yourself with support -- you will get through this and you are much stronger than you think you are!

Coping with Hearing Loss

admin — Thu, 12 Apr 2018 21:04:11 +0000

Coping with Hearing Loss admin Thu, 04/12/2018 - 17:04

Single-Sided Deafness (SSD), or unilateral sensorineural hearing loss, refers to significant or total hearing loss in one ear. The hearing loss is usually permanent and may be the result of a variety of conditions including:

Acoustic Neuroma

Sudden deafness – can occur at any time, often for unknown reasons
Physical damage to the ear
Pressure on the hearing nerve
Inner ear problems including infections (viral or bacterial)
Diseases such as measles, mumps, meningitis
Disorders of the circulatory system
Severe Meniere's disease
Trauma – e.g. head injury

Head Shadow Effect

An issue which affects communication for people with SSD is the “head shadow effect." Sounds that originate from the side of the deaf ear fall in the shadow of the head.

Head shadow

Vowel sounds which have longer wavelengths may still travel from the deaf side to the hearing side, but consonants which have a shorter wavelength and carry the most meaning for speech and conversation, don’t do as well in terms of making their way from the deaf ear around the head to the hearing ear.

This can cause a great deal of frustration for the individual with SSD especially when trying to communicate in the presence of background noise.

Another issue for people with SSD is directionality. Directionality (or sound localization) is an important aspect of managing communication and environmental cues. When you’re unable to hear out of one ear, crossing the street, cycling and jogging can all become difficult and even dangerous. Unexpected communication challenges arise in situations such as:

Communicating in the car (deaf side facing driver)
Interacting in circular group meetings (can be difficult even if participants are speaking

one at a time and even worse if distance is a factor for large circular discussions)
Whispered communication into the deaf ear in quiet environments such as church, lectures, movies or training

All of the above situations can greatly affect day-to-day life. As a result, some people with SSD find themselves exhibiting irritability and jumpiness, have frequent headaches (due to stress), feel socially isolated and experience chronic interpersonal communication difficulties. Undetected SSD in children may even be misdiagnosed as ADHD.

CROS and BiCROS Hearing Aids

In cases of SSD, the deaf ear receives no clinical benefit from amplification. This means that no matter how loud we make things through a hearing aid, speech is not clear or usable in that ear. The other ear often has typical or regular hearing ability, but not always.

As with any hearing loss, we cannot restore the hearing once it has been lost. For SSD, there are treatments available which can restore the sensation of hearing to the deaf side. One treatment option available for SSD is a CROS or BiCROS hearing aid system.

CROS/BiCROS

CROS hearing aids systems are worn by individuals with one deaf ear and one ear that is unaffected by hearing loss. With a CROS hearing aid system, a transmitter (which looks like a behind the ear hearing aid) is worn on the deaf ear. The transmitter’s microphone picks up sound from the deaf ear and sends it to a receiver (hearing aid) that is worn in the ear that has hearing.

BiCROS hearing aid systems are worn by individuals with hearing loss in both ears, but one ear is deaf and unaidable. In this case, a transmitter is worn on the deaf ear. The transmitter’s microphone picks up sound from the deaf ear and sends it to a receiver/hearing aid that is worn in the better ear. But as the better ear still has hearing loss, amplification is provided to that ear along with the information coming from the deaf ear.

Communication Styles

Having a hearing loss doesn’t mean you need to take a backseat in life. One important step is to understand the type of communicator you are and with the right adjustments, you’ll be on the road to a lifetime of good communication. On the most basic level, there are three kinds of communicators: Passive, Aggressive and Assertive.

Communication styles

Passive communicators often start out in denial about their hearing loss before comfortably sliding right into the background – not wanting to call attention to their problem or ask for help. “Passives” will avoid situations and conversations where they may need or want to participate.

“Aggressives” have no problem letting you know that they have a hearing loss or that you may need to modify some aspects of your communication. Aggressive communicators tend to dominate conversations – the more they talk, the less they must try to listen.

"Aggressives" often place blame on others during communication rather than accepting their own role and responsibility to ensure that they understand. They may even go as far as ignoring their communication partners when they don’t understand.

Unlike passives, “assertives” ask for communication help when necessary, but don’t demand it like "aggressives." Assertive communicators stand up for themselves to ensure that their needs are met. They do this through a blend of mastering effective communication strategies and advocating for themselves.

The Basics of Being an Assertive Communicator

Let others know that you have a hearing loss upfront.
Don't be afraid or embarrassed to ask for what you need.
Keep background noise low.
If you are unsure you understood, summarize what you think was said so the speaker

can confirm or explain again.
Face the person you're speaking with.
Try to keep a sense of humour.
Don't be too hard on yourself and give yourself a break in a quiet area to regroup.
If you're too tired or distracted for a conversation, ask to postpone.

Things to Consider About the Environment

Do your best to have a conversation in a place with good lighting, so you can see the speaker's face, gestures and body language.
If you're going to a restaurant with friends or family, try to arrange a time that is not during peak dining hours. Try to sit somewhere away from noisy spots such as the server’s station or kitchen.
When you're with a group of people, try to position yourself in the middle of the room or group so you have visual access to most people's faces.
If you're joining a conversation with a group, ask for the conversation topic so you have contextual cues.

Communication Repair Strategies

Get your attention before starting a conversation
Face you when speaking
Repeat more slowly
Rephrase what he or she has said
Give you the keyword or subject of conversation
Spell a word
Write something down, especially important dates, times or appointments
Use gestures
Simplify or shorten the sentence

Ask for Help When You Need It!

Use "I" statements (e.g., “I need you to please repeat that last number”)
Explain why you need an adjustment
Be specific
Be polite

Canadian Hearing Society (CHS)

If you live near an office, CHS may be able to help you in the following ways:

Audiology - hearing tests, hearing aids, tinnitus help
Connect Counseling – mental health challenges
Hearing Care Counseling – In-home hearing counselling help for 55+
Employment Services – Job search activities and workplace accommodations
CART – Communication Access Real Time (CART)
Hearing Help Classes (communication strategies, hearing aid workshops)
ANAC Support Group – Toronto

Although being diagnosed with an acoustic neuroma can and often is an overwhelming experience for most people, understanding how you can make the most out of your communication options can help you cope better and stay connected to others.

Rex Banks

Rex has been an audiologist since 1989 and is the Director of Audiology at the Canadian Hearing Society. In addition to being registered with the College of Audiologists and Speech Language Pathologists of Ontario (CASLPO), Rex is also a certified member of the American Speech Language Hearing Association (ASHA) and holds the Certificate of Clinical Competency in Audiology (CCC-A) designation.

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