surgery

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

Gavin's Story: Living with & Preparing to Evict My AN, “Frank”...but When?

admin — Wed, 19 Jan 2022 22:12:12 +0000

Gavin's Story: Living with & Preparing to Evict My AN, “Frank”...but When? admin Wed, 01/19/2022 - 17:12

Gavin Donatelli of Victoria, BC discovered he had an AN after suffering a concussion following a game of hide and seek. He was only 35 years old at the time.

Gavin Donatelli

Through a strange set of circumstances my acoustic neuroma (AN) was discovered in 2017. I previously worked for a youth criminal justice program offering an alternative to incarceration to help offenders get onto a positive life path. While playing an intense game of hide and seek tag, a favourite of both participants and staff, I was accidentally kicked in the head.

I suffered a concussion and, during the assessment of my injury, an MRI of my brain revealed that I had an AN on my left side. After hearing my diagnosis, I immediately recognized what they were talking about because

one of my parents also has an AN. However, we do not have NF2, the genetic binomial version of an AN, and I have been told that it is pure coincidence we both have ANs based on the existing research. I have also undergone genetic testing, performed by none other than a Dr. Blood, to see if she could detect genetic markers suggesting our ANs are hereditary. The testing came back saying that no genetic mutations were identified for NF2. However, an increased susceptibility to an AN wasn’t entirely ruled out. I looked it up and, if the odds of having an AN are 1 in 100,000, then by my calculations the odds of both my parent and me having an AN are 1 in 10,000,000,000. I suspect that there just hasn’t been funding to research other hereditary causes of single-side AN.

Fortunately, when my AN was discovered, it was small (11mm x 5mm), and it didn’t seem to be causing symptoms. I was told by my ENT that I would need to go for regular MRIs to monitor the size, but it would only be life threating if I lived in a remote area far from access to advanced medical care. While my ENT mentioned surgery as an option one day, he told me that “watching and waiting” was the best course of action. I decided I needed to make peace with my tumour, which I named Frank, and hoped that we could cohabitate and share the limited space in my brain for years to come. However, Frank had other plans and he has continued grow in size.

Eventually, I arranged a consultation with Dr. Vallieres, a radiation oncologist who outlined the costs and benefits. She said that this procedure carries a lower risk of losing my hearing on the left side, at least initially, no requirement to cut the balance nerve, and would allow me to have little disruption in my life. However, given my young age of 35, there could be long-term risks of developing cancer and other issues by exposing my brain to radiation. While there are no studies showing a link between these radiation procedures and developing brain cancer, these procedures are relatively new and the majority of patients with ANs are older. Therefore, there are lower risks for them using radiation because there is less potential time for negative side effects to develop in the life span of these patients. Dr. Vallieres said that given my age, which should help me recover better from the surgery, the talent of Dr. Akagami (the famed neurosurgeon in BC), and the additional risks for using radiation as a treatment, she would encourage me to consider surgery as an option. She was careful to tell me that both procedures are good choices and that ultimately, I would need to make a personal choice. I was struck by the fact that this physician was recommending a treatment option for me other than her own specialty. I really appreciated her candor and her empathetic approach to my situation.

At a subsequent consult with my ENT, my AN showed enough growth that he suggested I meet with Dr. Akagami. I saw Dr. Akagami in August of 2020. He said that both radiotherapy and surgery were viable options; however, he said the radiotherapy would provide less control of the tumour size and there is a very small risk of radiation-induced tumour growth. In addition, the radiotherapy typically provides about 15 years of control over the tumour at which point the effectiveness decreases. Since I hope to live significantly more than 15 years, this played a factor in my decision. The potential for complete loss of my hearing on my left side was more likely with surgery, but I could get lucky with a 40% chance of hearing preservation. I also understood that while there are risks to my facial nerves, chance of increased neurological deficit and other associated risks of the surgery, given my age and health, as well as the location and size of the tumour, I had a really good chance of a comprehensive recovery from the procedure. While the prospect of having brain surgery seemed daunting, I got a good feeling from Dr. Akagami and many people told me how highly skilled he is, including his ENT partner, who described his hands as “a gift from God!”

It was around this time that my mother did some research and discovered the Acoustic Neuroma Association of Canada (ANAC). Right when I really needed a lifeline, ANAC was there for me. I joined their support group and took comfort in the advice, community and collective wisdom they offered me. ANAC shared a list of top doctors I could contact for a second opinion and sent newsletters with the latest medical information. ANAC connected me with other people in similar circumstances who could share their experiences with the various treatment options, and gave me helpful tips for recovery and living with an AN. Carole Humphries, the Executive Director of ANAC, has been so kind and helpful. Carole has been a strong advocate and support for me, going above and beyond to let me know I’m not alone in this struggle.

I decided to have surgery and got my name on Dr. Akagami’s waitlist in September 2020. I was told that, given my tumour size, I would likely be on the wait list for about a year before I would have my surgery. This was a long time to wait, but I mentally prepared what I like to think of as my “ armour”. I started exercising more, I stopped drinking, and I started doing additional exercises to enhance my balance to prepare for when they cut my balance nerve on my left side to remove the AN. In the spring of 2021, I met with a new ENT who informed me that my AN hadn’t grown in the latest MRI. At ANAC’s AGM this past summer, I learned that tumours can potentially stop growing because they outrun their blood supply.

In May of 2021 my partner and I had been lucky enough to welcome our first child into our lives! Our son Ozzie has been such a blessing during COVID and a real inspiration to help me prepare and plan for recovery from the surgery. I did start wondering if I might be able to “watch and wait” again if my tumour had indeed stopped growing. I emailed Dr. Akagami and learned my ENT had incorrectly assessed my tumour which was in fact still growing at about the same pace. This was really hard news to take. I had been mentally preparing for surgery and the sliver of hope my tumour had stopped growing had weakened my resolve, I think in part because I’m now a parent and worried about how I will care for my son post-surgery.

My MRI in September 2021 showed that my tumour continues to grow, is 16mm by 14 mm, and I am definitely experiencing symptoms. My surgery has been postponed from September 2021 until at least the new year, because of the strain on our healthcare system caused by this pandemic. Nurses are burning out and retiring, and access to operating room time has been limited. This delay is disheartening since now I do not know when I will be able to get this tumour out of my head or if my symptoms will significantly increase before it’s removed.

British Columbia, like many other places worldwide, has seen a spike in the number of COVID cases and number of unvaccinated people in ICUs during the current 4th wave. Hospitals are being pushed to the brink and are having to cancel or delay all kinds of surgeries and medical procedures. This has forced people like me to wait longer for urgent medical procedures and suffer through symptoms.

My hope is that those who are unvaccinated will listen to the advice from the consensus of global medical experts and get vaccinated to bring this pandemic to an end. At the very least, I encourage you to speak with your local health care provider about your concerns and refrain from sharing anecdotal information about COVID-19 vaccines that is unsupported by scientific evidence. My quality of life depends on people getting vaccinated so that I can access the healthcare intervention I need.

radiation

surgery

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.

My Acoustic Neuroma Experience: Bill's Journey Down a Bumpy Road

joanne — Wed, 07 Oct 2020 20:02:21 +0000

My Acoustic Neuroma Experience: Bill's Journey Down a Bumpy Road joanne Wed, 10/07/2020 - 16:02

Bill Wood recently moved to Oakville, Ontario with his wife where he continues to drive and explore his new neighbourhood.

Bill Wood

During 2011 and 2012, I experienced four episodes of horizontal double vision while driving. An optometrist could not detect any eye-related problems and suggested that the cause could be medical. My family doctor arranged for testing at a stroke prevention clinic. An x-ray detected no abnormalities, but an MRI showed a growth in my right ear, which I was told would have to be removed. I was referred to a neurosurgeon, who told me that I had an acoustic neuroma about the size of a pea. As these tumours can sometimes stop growing and not require intervention, my options were active surveillance (Scan and Wait) or surgery.

Since the tumour was small and I was not experiencing any major problems, it was suggested that I have another MRI in a year and review the situation then. Apart from the vision problems, I had vague symptoms consisting of light-headedness, minor balance problems and sound distortion in the right ear. The neurosurgeon saw nothing in the MRI that would explain the double vision. A referral to a neuro-ophthalmologist resulted in the diagnosis of a mild sixth cranial nerve palsy, which resulted in a prism prescription being added to my eyeglasses to alleviate the problem. Apparently, there was no connection between the acoustic neuroma and the sixth cranial nerve palsy, which I find difficult to accept, since they both occurred at the same time.

I began to notice symptoms associated with an acoustic neuroma in 2013. Walking the dog was difficult when she pulled on her leash, and I was afraid of losing my balance. Head movements resulted in increasing dizziness, and hearing in the ear with the acoustic neuroma ear was becoming worse, as confirmed by an audiogram.

The second MRI showed that the tumour had grown considerably. Because I was having symptoms, the neurosurgeon suggested it was time to consider treatment options. Unfortunately, I had poor hearing in one ear from a childhood accident, and the acoustic neuroma was on the side of what was my good ear. He said that if he operated, I would lose hearing in that ear, and suggested Gamma Knife would be effective with the benefit of possibly preserving hearing for a longer time and a consultation was scheduled at the Gamma Knife Centre at Toronto Western Hospital.

When treatment possibilities for the acoustic neuroma had to be considered, I decided to learn more about acoustic neuromas. I found the ANAC website, became an ANAC member in 2013, and attended a Toronto Chapter meeting hosted by Kathryn Harrod and Lynda Nash, which was very informative and reassuring. Carole Humphries has also been in touch over the years and has sent me information and provided recommendations.

Following my assessment, I underwent Gamma Knife at Toronto Western Hospital on September 04, 2013 at 5:45 AM. I only experienced minor pain for a few days where the pins were used to attach the frame. However, during the next few months balance and dizziness during motion seemed to worsen. I contacted a nurse at Toronto Western and received a referral for vestibular therapy. The exercises were helpful, and I continue to do most of them at home. Hearing gradually declined in the acoustic neuroma ear to the point where a standard hearing aid would only amplify a distorted sound. A bicros hearing aid configuration, where a microphone is used on the bad side to transmit to a hearing aid on the better side, has been helpful.

My understanding is that Gamma Knife is effective in stopping acoustic neuroma growth in the majority of cases. Follow-up MRIs in 2015 and 2016 showed that the tumour was getting smaller. However, an MRI in 2018 indicated regrowth, accompanied by the start of new symptoms. I experienced occasional facial twitching and a change in taste sensation. Balance problems and dizziness were becoming somewhat worse. Another Gamma Knife treatment was scheduled, which took place on November 07, 2018. A follow-up MRI on May 08, 2019 seemed to indicate that the tumor was getting smaller, which was confirmed in an MRI on May 26, 2020. The facial twitching has disappeared, but I have recently developed watering in the right eye while eating.

Another MRI will be scheduled for May 2021. My understanding is that if the tumour starts to grow again, I would probably be a candidate for a third Gamma Knife treatment if needed, but it is unlikely, and third treatments are not common.

I am generally in good health except for imbalance, dizziness when moving, poor hearing and change in taste when eating, which I attribute to the acoustic neuroma. Walking has become more difficult, partly because of arthritis, stiffness, and loss of muscle mass, which is not unexpected at age 79. Using a cane has been helpful. I am trying different exercises to maintain mobility and have recently taken up Nordic pole walking. It was unfortunate that the acoustic neuroma affected what was my good ear and I now have to rely on hearing through what was my bad ear. Even with a bicros aid configuration, understanding speech can be difficult. Driving used to be enjoyable, but I now avoid long trips and heavy traffic and therefore have not had a problem.

My wife and I recently moved from Brampton to a condo in Oakville to be close to our son and family. There are many seniors in our building and several in our age group have more severe health problems and are less mobile than we are. We are fortunate that we can still do most of what we want to do, for which I am thankful.

On another note, I have been participating in a Mayo Clinic study “Prospective quality of life in patients with acoustic neuromas” with Dr. Mathew Carlson and Dr. Michael Link since 2017.

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

hearing

surgery

Chelsea's AN Experience: From Diagnosis to Recovery

joanne — Mon, 02 Dec 2019 22:52:32 +0000

Chelsea's AN Experience: From Diagnosis to Recovery joanne Mon, 12/02/2019 - 17:52

Chelsea Shanoff is a musician who has faced an Acoustic Neuroma diagnosis.

Chelsea Shanoff

In December 2016 I was finishing my first semester in a PhD music program in Toronto, when I started experiencing strange sensations through the left side of my head: tingling, electrical “zaps” on my face, fluttering in my ear, and what felt like dental pain. I was worried about these symptoms, but I figured I had overdone it with playing my instrument, the saxophone, and assumed I was suffering from a musculoskeletal disorder in my jaw or neck.

Over the next half year, my symptoms progressed and fluctuated, and I saw dentists, doctors, manual therapists, and an ENT who finally discovered that my high-range hearing on the left side was lower than on my right. Again, I thought this was just the wear and tear of being a musician. She said she was being overly cautious but that she would like to send me for an MRI to rule out this rare condition. Fast-forward a number of months, and we arrive at my diagnosis of the “really rare condition” – a 2cm Acoustic Neuroma (AN). Looking back, I see some mild dizziness and balance symptoms that had been present for a long time but that were subtle enough to not alert me to any issues.

The specialists advised me that although I would likely need to have surgery down the road, we would first “watch and wait”, with MRI scans every six months. The waiting period allowed me to gather as much information as I could and to seek multiple opinions. I explored different hospitals, surgical approaches, and doctors in order to make the most informed decisions. I continued on with my life; most people did not know what I was dealing with, but the facial symptoms continually worsened. I learned that the electrical sensations I was experiencing were caused by my tumour pressing on the trigeminal nerve (one of the other cranial nerves), and it gradually progressed to the point where eating and talking would send incredibly intense shooting pain through my face. It became clear from the scans that my tumour was slowly growing (it was about 2.5 cm at the time of surgery), and the surgeons said it was time to take action.

Almost two years after diagnosis I had translab surgery at Sunnybrook Hospital in Toronto. The team was able to remove almost the whole tumour: a few cells were left behind in order to preserve the facial nerve (hopefully these cells won’t show up on an MRI for many years, if ever). The surgeon reported that the facial nerve was extremely thin and if I had waited much longer, they wouldn’t have been able to save the nerve, and that the tumour appeared much larger once they actually got inside my head. Needless to say, hearing this made me very glad that I did not wait longer to do the surgery.

I feel incredibly lucky that my recovery has been straight-forward and positive: I did not have any surgical complications or permanent facial paralysis, I was walking (gingerly) on my own by the end of the first week, and the dizziness and nausea that I experienced immediately following the surgery improved greatly with time, regular walking, and vestibular exercises. I was socializing at restaurants by the end of the first month, did a (slow) yoga class at six weeks, and got back on my bike after two months. I’ll never really know how much of my great outcome can be attributed to luck, the surgical team, or my pre-op health, but I would assume it to be a combination.

My surgeon was honest with me, saying that many people feel frustration after a few months post -op, when they are in most respects “back to normal,” but still don’t feel like themselves and are adjusting to internal sensations. Many refer to this part of recovery as “chasing the final 10 or 15 percent” and that even with a textbook no-complications surgery, it likely takes about a year for the brain to fully heal from the surgery and adapt to the loss of balance and hearing nerve.

I am writing this at four months post-op, thinking a lot about this in-between stage. Patients often don’t get a lot of information from doctors as to what this part of recovery is like, and it can be an isolating and emotional time. The brain is working overtime to adapt, and this often shows up as intense fatigue, brain fog, and the “wonky circus head” phenomenon. Adapting to single-sided deafness post-surgery is often the hardest part to adjust to long-term. I am still getting used to the challenges of filtering sounds and noisy environments, and also coming to terms emotionally with this huge loss, and what it means to me. I have learnt what triggers my fatigue and the circus- head feeling and how to minimize the effects, but also that total avoidance of triggers can make recovery slower.

This stage of recovery can be frustrating because it is invisible to others and can be hard to explain. With such huge leaps and bounds of recovery within the first month, during this middle stage it can feel like progress has stagnated. This is where connecting with others who have gone through the same thing, and understand these challenges, can have a huge positive impact.

Shortly after diagnosis, I connected with another AN-er who lives in the same city as me. We are similarly aged and had the same surgical team with our surgeries two months apart. We have become close friends from this experience, with a level of connection that is only possible when you share a diagnosis and neurosurgeon! Acoustic Neuromas are often referred to as the best type of brain tumour to get, but they pose their own challenges due to the multiple treatment options (yet no “perfect” treatment), hearing loss, and a myriad of possible symptoms.

The emotional toll of living with an AN, and going through the surgery, should not be neglected; recognizing the emotional impact is an important part of the long-term recovery process. For that reason, it is crucial not only to seek out the best neurosurgeons and specialists, but also a varied support system that can help guide you through diagnosis, treatment, and recovery – whatever that may look like for you.

Pat Greenwell’s Acoustic Neuroma Diary: Her AN Journey from 1997 to Now

joanne — Wed, 05 Jun 2019 21:48:27 +0000

Pat Greenwell’s Acoustic Neuroma Diary: Her AN Journey from 1997 to Now joanne Wed, 06/05/2019 - 17:48

Pat Greenwell's life became complicated for her while living in rural Alberta in 1997.

Pat Greenwell

Treatment for breast cancer and an increasing dizziness and loss of hearing in the right ear. Doctors blamed the chemo. We’ve all been there. Months of trying to convince doctors that the symptoms are not imaginary. No, trust me, Doctor, antibiotics, decongestants, anti- vertigos and valium don’t work.

Finally, a casual mention of dizziness to my breast cancer surgeon, dear Dr. Fraser, in Edmonton, who sent me off for an emergency CT scan and finally, within an hour, a diagnosis of a 3 cm brain tumour – an acoustic neuroma.

Shock for us both, especially my husband Ken, but I’d kind of suspected. The tumour had blocked the flow of fluid out of the brain so, in addition, I had hydrocephalus. An emergency procedure to install a Ventricular-peritoneal shunt was done the next day to prevent a stroke or aneurysm. Thank you, Dr. Max Findlay.

Now what?

I read everything I could on what my choices were, learned to live without driving, learned to live with worsening symptoms, wore a medic alert bracelet so that the shunt which goes to the abdomen doesn’t get interfered with... tumour is too large to consider anything but surgery.

Okay, Dr. Findlay, pretend I’m your mother, what do you recommend? Edmonton, a higher chance of facial paralysis (21 years ago) vs Toronto, Dr. Findlay’s mentor, Dr. Charles Tator.

No contest.

Off to Toronto for three weeks...

Appointments arranged by Dr. Tator’s secretary, Maria Vespa, giving info about hotels and transportation between hospitals for Ken and me, two traumatized people. A week of appointments and tests with Dr. Rutka (ENT) to see if I had salvageable hearing in the right ear.

Nope.

Oct 6, 1997...

14 hours of surgery at Toronto Western Hospital in the midst of a nursing shortage. I was warned in ICU to keep a bedpan handy because calling a nurse would not often work. My roommate was a teenage girl who had had numerous brain surgeries and her mom slept on the floor by her bed —a cozy threesome. Ken stayed close, took care of me, taught me to walk again when I was wobbly. A constant stream of young doctors all who had been inside my brain, learning at the hands of the master, my hero, Dr Tator.

A week of recovery, then back to Alberta. Bald, clumsy, hard to see with an eyepatch... not answering the door... Two weeks of temporary facial paralysis which felt like a lifetime. Running to the mirror every morning to see if I can smile yet and to see if my eye will close by itself. Pins and needles on my face and the traumatized facial nerves recovered.

Lots of naps, lots of hovering family, friends taking me for walks and I finally became myself again.

2019: fast forward to age 76......

Retirement to Powell River on the BC coast in 2005.

Daily bike rides with hubby, singing in a local choir, volunteering, good health most of the time. I still find it hard to walk in a straight line, and don’t balance well on one leg. Teary right eye and runny nose -- a minor inconvenience handled with tissues.

I take very good care of my left ear, try to avoid loud places and crowded events, and wear an earring from ANAC in my right ear which says, “out of order”. (The grandkids love that!) We are bird watchers and while I don’t know what direction the song is coming from, I can still love the song.

Gratitude is part of my life! Life is good!

More of Our Stories

surgery

treatment

To Judy: Further Insights in the Conservative Management of a VS

joanne — Sun, 28 Apr 2019 21:29:02 +0000

To Judy: Further Insights in the Conservative Management of a VS joanne Sun, 04/28/2019 - 17:29

Dr. John Rutka is a fellow of Royal College of Physicians and Surgeons of Canada and a professor of Otolaryngology-Head and Neck Surgery at the University of Toronto. He sent the following letter to Judy Haust, President of ANAC.

Dear Judy,

I have known you for many years personally but became your treating physician when you were diagnosed on a MRI scan to have a vestibular schwannoma (VS). I can only imagine what went through your mind when you found you had a benign brain tumour that was responsible for your left sided hearing loss.

You seemed somewhat surprised I didn’t more forcibly recommend an active treatment option at the time such as stereotactic radiation or microsurgical removal. I know that this is what I may have thought if I was in your position.

Instead I recommended that as your tumour was relatively small, we could continue to watch it with serial intracranial MRI scans. If there was no significant growth, we could continue with this management. If your tumour did grow however then some form of active intervention would be required. Since we met to professionally discuss your management it has now been almost 6 years and I am pleased to report that everything has been stable with regard to the tumour size.

As you know we have had quite considerable experience watching individuals with VS’s over the years with Conservative Management (or the Wait and Scan Approach). While we still don’t know why some tumours grow and others do not (in fact up to 15% might decrease in size naturally) we certainly know that your quality of life is best if no active intervention is required as we are still not able to improve upon your lost hearing or the balance function despite our best intentions. As they say, sometimes less is better in medicine.

When we met I advised you that our 10 year longitudinal prospective study in patients (average age of 58 years at entry) with tumours < 1.5 cm in size within the cerebellopontine (CP) angle had demonstrated the vast majority of tumours continued to grow slowly (92% < 2mm/year in cross sectional diameter), the average growth rates of tumours within the internal auditory canal was remarkably 0mm/year (the presence of a tumour localized to the IAC seemed to demonstrate indolent behavior for the most part in this age group) and that 95% of patients with IAC tumours did not require active intervention. The most important stats from this study were that over 10 years 60% of patients did not go on to receive active treatment and in the 40% that did there was no harm by waiting compared to our normal surgical and stereotactic radiation controls. Moreover, a tumour usually declared whether it was growing within a five-year timeframe.¹

Just wanted to let you know we have continued to offer a trial of conservative management to most patients with vestibular schwannomas < 2cm in size within the CP angle taking into account age, presence of other health co-morbidities and whether hearing is serviceable (and associated with favorable prognostic findings for hearing preservation surgery). Our findings have paralleled further studies regarding the conservative management of VS’s from the UK, Denmark, Netherlands, US and even China specifically. ^2,3,4

I don’t know whether I ever told you the story that in April 2005, I had presented our then seven- year longitudinal findings at the time to the North American Skull Base Society who were meeting in Toronto. The findings are captured in the editorial I wrote shortly afterwards for the journal, Clinical Otolaryngology, entitled “What Would You Do if You Had a Small Vestibular Schwannoma? An Apocryphal Tale.” ⁵ I had presented the case of an intracanalicular VS in someone who was 50 years old (my age at the time) where hearing preservation was not an issue.

I polled the audience to see what they would recommend as the treatment before my lecture began. Most were surgeons and it came to no surprise that almost all recommended microsurgical removal although there were a few who felt stereotactic treatment was reasonable. Only a couple of people in the audience raised their hands to show support (myself included) for an initial trial of conservative management at the time.

After presenting our seven-year results (70% continued to be managed conservatively; 30% had required some form of active treatment) I asked the same question showing the same imaging study but said “this time the patient is you”. Remarkably well over 90% of the audience now seemed comfortable following their tumour with serial imaging initially. Interesting how things can change?

In my further review for this letter I have also looked again at the world literature and find that the conservative management option continues to be recommended certainly in the Northern European countries and less grudgingly now in the US. Unintended benefits from conservative management also interestingly demonstrated what seemed to be a significant cost saving for publicly funded health care systems (i.e., Canada) where the money saved could be reinvested in other programs. From our calculations it would take up to an 80% failure rate before the upfront costs of conservative management would exceed those of microsurgical removal for example.⁶

While not everyone should be considered a candidate for a trial of conservative management, I think that when your tumour is relatively small and hearing preservation not of concern then this option should at least be considered. The sine qua non however is that you need to be followed with interval scans possibly for many years to come.

When I look back, I think the advice I gave you at the time was right advice for the moment. I hope that things will continue as they have and perhaps maybe your tumour will start to get a little smaller as the years go by.

Will have my office make the arrangements for your next MRI in August-September 2019. Wishing you the very best as always.

Sincerely, John

References

Hajioff D, Raut VV, Walsh RM et al. Conservative Management of Vestibular Schwannomas: Third Review of a 10 Year Prospective Study. Clinical Otolaryngology 2008; 33:255-59.
Patel J, Vasan R, van Loveren H, Downes K et al. The Changing Face of Acoustic Neuroma Management in the USA: Analysis of the 1998 and 2008 Patient Surveys from the Acoustic Neuroma Association. Brit J Neurosurgery 2014; 28:20-24.
Stangerup SE, Caye-Thomasen P. Epidemiology and Natural History of Vestibular Schwannomas. Otolaryngology Clinical N Am 2012; 45: 257-268.
Martin T, Tzifa C, Kowalski C, Holder RL et al. Conservative Versus Primary Surgical Treatment of Acoustic Neuromas: A Comparison of Rates of Facial Nerve and Hearing Preservation. Clinical Otolaryngology 2008; 33: 228-235.
Rutka J, What Would You Do if You Have a Small Vestibular Schwannoma? An Apocryphal Tale. Clinical Otolaryngology 2008; 33:236-238.
Verma S, Anthony R, Tsai V, Taplin M et al. Evaluation of Cost Effectiveness for Conservative and Active Management Strategies for Acoustic Neuroma. Clinical Otolaryngology 2009; 34; 438-446.

Dr John Rutka

Dr. John Rutka is a fellow of Royal College of Physicians and Surgeons of Canada and a professor of Otolaryngology-Head and Neck Surgery at the University of Toronto. His active staff appointment is at the University Health Network where he has a subspecialty interest in otology/neurotology. He is on consultant staff at Sinai Health Systems, St Michael's Hospital, the Dryden District Regional Health Centre and the Meno Ya Win, Sioux Lookout District Hospital.

Dr. Rutka has been involved in the active management of patients with VS's over the past three decades in conjunction with his neurosurgical and radiation colleagues at the University Health Network. John has been recognized for his work and has been awarded the Sir William Osler Clinician Scientist Award previously.

Dr. Rutka is the chief mentor for the the Peter and Melanie Munk Foundation Fellowship in Otology/Neurotology and is the co-director of the UHN Center for Advanced Hearing and Balance Testing and the Hertz Multidisciplinary Neurotology Clinic. Dr. Rutka lives in Toronto with his wife Marilena.

surgery

treatment

Dear Dr. Rutka: Judy’s Response to the Doctor About Her Treatment

joanne — Sun, 28 Apr 2019 21:24:17 +0000

Dear Dr. Rutka: Judy’s Response to the Doctor About Her Treatment joanne Sun, 04/28/2019 - 17:24

In her reply to Dr. John Rutka, Judy Haust follows up with the results of her ongoing treatment.

Dear Dr. Rutka,

John, you are noted amongst your colleagues for the comprehensive letters you send to your patients, painstakingly explaining their diagnoses and the various treatment options available to them. I was so grateful to receive one of those letters going on six years ago! At my follow up appointment with you in early 2014 to discuss the initial MRI results, you pointed out that the good news was that my tumour was benign (the detected mass in my brain being the bad news!) and what a huge relief that was for me! Also, because my tumour was relatively small, I considered myself fortunate to have options in terms of which treatment to choose.

Judy Haust and Dr John Rutka

Nevertheless, as many AN patients in this dubious position soon realize, having options is somewhat akin to sitting under the legendary Sword of Damocles (to borrow a metaphor used by your fellow UHN neurosurgeon, Dr. Michael Tymianski, at the 2016 ANAC Symposium): with our great fortune comes great responsibility and risk! Regardless of which option we choose, we are never guaranteed a positive outcome, nor will our quality of life necessarily improve. As you mentioned in your recent letter to me, “Sometimes less is better in medicine.”

Navigating the world of Acoustic Neuromas is an on-going journey of discovery. In the early stages, I felt very much like a pinball bouncing from one so-called “no brainer” decision to another... first choosing the translabyrinthine approach, then retrosigmoid approach and, eventually, Gamma Knife. (You may remember that I wrote my full story within an article entitled, June Kudos, in the Summer 2016 ANAC newsletter.)

As you know, during the first two years after diagnosis, my tumour grew quite rapidly by approximately one centimetre (.5 x 1.1 to 2.1 x 1.4). To avoid having my tumour make the decision for me if it were to grow much larger, I finally decided on Gamma Knife surgery and was booked for an appointment at TWH at the end of June 2016.

Miraculously, the planning MRI just prior to that surgery showed that the tumour had stopped growing! Upon my asking if a reprieve would be possible, you granted me a “stay of execution”, so long I was comfortable with that decision. Is a banana bent? My radiosurgery was cancelled, and I felt as if an elephant had suddenly stepped off my chest! Since that time, my tumour has been stable, as determined by the semi-annual MRI scans you order. I can't help but think of the proverb, "Good things come to those who wait." Obviously, this approach isn't for everyone but, so far, patience has worked well for me.

Your recent letter reinforces this resolve to continue to embrace the Wait and Scan approach of conservative management. Who knew that my rapidly growing tumour would stop growing two years later! I’d forgotten your story from April 2005 at the North American Skull Base Society meeting in Toronto where, at the beginning of your presentation, you polled the (mostly) surgeons about what they would recommend for patients with small ANs... traditional surgery, of course, according to the majority. Then, after presenting them with the (then) seven-year longitudinal findings of your ten-year prospective study of patients presenting with small tumours, you polled them again, saying “this time the patient is you”. Fascinating outcome! That story warrants repeated telling.

When I learned several years ago that you sat on ANAC’s Medical Advisory Committee, I delved further into what the association had to offer, soon becoming a member and attending the amazingly helpful June 2016 ANAC Symposium. I also started participating in the invaluable Toronto Chapter group support meetings. It wasn’t long before I decided to become even more actively involved by accepting an invitation to join ANAC’s Board of Directors. I’ve never looked back and continue to be so appreciative of your guidance and care. I look forward to continuing this journey of discovery together!

Respectfully, and with many thanks,

Judy

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!