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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.

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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

Trekking to the 2018 Symposium: Elizabeth’s Pathway to Managing Her AN

joanne — Tue, 05 Mar 2019 22:17:50 +0000

Trekking to the 2018 Symposium: Elizabeth’s Pathway to Managing Her AN joanne Tue, 03/05/2019 - 17:17

Elizabeth Ewashkiw from Belleville, Ontario has been working hard to minimize her symptoms with the help of a vestibular therapist.

Elizabeth Ewashkiw

As an active, 74-year-old retired kindergarten teacher, I consider myself an engaged member of the community. Medically, I have keratoconus which is a progressive eye disease in which the normally round cornea thins and begins to bulge into a cone-like shape. This cone shape deflects light as it enters the eye on its way to the light-sensitive retina causing distorted vision, for which I have had three corneal transplants over the past 40-plus years culminating in an unsuccessful trabeculectomy for glaucoma. This has left me with no vision in one eye and a scleral lens in the other.

Having gradually adjusted to the lack of depth perception and minor balance issues, I was therefore not surprised when I seemed to develop vertigo a few years ago. I was careful getting into boats (we cottage on an island, so this is significant), started holding hand rails when possible, and got on with life.

In January 2018 after my flight home from BC, I experienced sudden onset deafness in one ear and secured an appointment with our ENT in Belleville. Also, after the flight to Europe in May 2018, I had balance issues and needed to take my husband's arm for the whole trip. The vertigo gradually settled down somewhat after we were home again.

After waiting for an appointment, waiting for an audiogram, waiting to have my ear cleaned out, taking time to cottage in the summer, and having an MRI, I was eventually diagnosed at the end of August 2018 with a small acoustic neuroma. It was not until November, when I had a second audiogram, that I was referred to Dr. Joseph Chen at Sunnybrook Health Sciences in Toronto.

My way of coping with the unknown is to learn all I can, so I turned to the search engines on the Internet looking for recognized national sites about acoustic neuromas. I soon learned that there was an acoustic neuroma association in Canada and, lo and behold, they would be holding a national symposium in Toronto at the end of September.

Living two hours away, I registered for the live webcast of the 2018 Symposium and sent a note. I immediately received a phone call from Carole Humphries, whose knowledgeable, warm and supportive manner, was exactly what I needed. Carole encouraged me to come to Toronto to experience the conference in person. The networking around our table, the fourteen pages of notes I took, the fact that the room was full of people with my symptoms, including some who had had surgery, plus the presenters making themselves available for brief chats during our refreshment breaks made this an invaluable day. I was able to introduce myself to Dr. Chen as a probable new patient and he immediately told me to discard the cane, use walking poles, and start walking, looking left and right continuously.

Elizabeth walking as part of her rehabilitation

I gathered later that this was to help my brain adapt to receiving balance information from my one set of circular canals, rather than the usual two.

The conference also gave me the opportunity to speak to a vestibular therapist whose expertise I realized I needed.

Arriving home in full-blown overload, I emailed my physiotherapist and the manager/friend of the clinic I had used in the past. I learned that my present therapist was also qualified in vestibular therapy. I started immediately, as I continued the twice-a-week free VON seniors' exercise classes, which contain a balance component. Homework for the therapy became mandatory as I practised walking a straight line, gradually moving my arms, and eventually I expect to be able to change elevation and focus (by bending knees, raising heels, rotating shoulders, etc.). This is only one of the multitude of exercises I have learned in recent months. If I neglect to maintain them, my balance is compromised. The rewards are built in. If I work at it, I experience success. If not, . . .? I get right back to practising!

By mid November 2018, I had an appointment with Dr. Chen, who reassured me that my small (0.6 x 1.5 cm) neuroma only needs monitoring every couple of years with an MRI, which I can have done in my home town of Belleville.

I have "graduated" from vestibular therapy but am most welcome to return when I deem it necessary and will continue to participate in two VON one-hour classes per week.

I had also learned about the CROS hearing aids when at the ANAC conference. Messages from the deaf ear are transmitted wirelessly to the functioning ear, from which the info is sent to the brain. When home, I went to learn about hearing aids. After another audiogram I asked what would be appropriate for me. The answer was the CROS. These I received on December 4. I certainly hear more with them (they look just like any other hearing aids, i.e. inconspicuous), but I do get caught out by the lack of directionality. If in a crowded room I hear a voice calling my name, I must rotate, checking people's facial expressions, to tell who has spoken to me! Similarly, around a table of unfamiliar people at a meeting, I don't automatically know who spoke. It all just adds another layer to "paying attention" to make it all work.

Presently I don't have to explain to people that I have balance issues or hearing in one ear only because I've learned how to compensate as much as possible. This is my new normal and it's working for me.

More of Our Stories

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Mitzi Jo's Story: So What! I’ve Got a Brain Tumour

joanne — Tue, 05 Jun 2018 21:01:43 +0000

Mitzi Jo's Story: So What! I’ve Got a Brain Tumour joanne Tue, 06/05/2018 - 17:01

Mitzi Jo Perritt's original article appeared in Canadian Audiologist Volume 5 Issue 2018 Volume 5 / Issue 4.

Mitizi Jo Perritt

It amazes me how our journeys take unexpected turns in our lives. In March 2017, I thought my life was getting a little better after three years of family health issues, my father passing away and me turning 50.

My husband, 11-year-old stepdaughter and I had just come back from a wonderful and well-deserved vacation in Isla Mujeres, Mexico. One evening, while I was sitting on the couch browsing on my iPad, I noticed something was bothering me and later realized it was a loud ringing in my left ear. A few days later, I answered my cell phone and the person on the other end sounded like a character out of Alvin and the Chipmunks – high-pitched and static. That’s the only way I could describe it.

I went to my doctor thinking that I’d perhaps picked up a bug in Mexico. There was no sign of infection in either ear, so I was referred to an audiologist who performed a hearing test that confirmed I had lost hearing in my left ear. She suggested trying a decongestant. When I went back a month later, a second hearing test showed further decline, so I was referred to an ENT specialist, who suggested there may be a problem with the “hammer” of my ear and referred me to another ENT specialist that I saw in October. After two appointments with him and a further hearing test, which revealed further hearing loss, it was concluded that there was nothing wrong with the “hammer”.

Of course, with all the waiting between appointments, I turned to Mr. Google and discovered there was a tumour called an Acoustic Neuroma. Although I had all the symptoms, I didn’t think I could have such a rare tumour. The ENT specialist said I could not possibly have an AN, and said my hearing loss was due to aging. However, he did say he could put me on a waiting list for an MRI exam, which could take up to a year here in Kelowna as there is only one machine at our local hospital. I told him I’d go next door and pay to have a private MRI done. He said not to waste my money – he’d try to get me in faster. Well, anyone who knows me would know that didn’t fly with me! I left his office, went next door and booked an appointment.

Two days later, on November 2nd, I went to my family physician to hear the MRI results. When I saw her face, I said, “I have a tumour, don’t I?” She confirmed that I had a good-sized tumour of about 3 centimetres. I went to my car and cried. I couldn’t believe it . . . I did not think it would be this rare tumour I had read about. It was worth the $1,250 to confirm the diagnosis. I called my husband, who had been texting me repeatedly before going into an important meeting with his biggest client. I later learned that when his clients entered his office and greeted him, he burst into tears in front of them. I felt so badly!

Needless to say, I went home and cried all day and night for a week. Google became my best friend as I was obsessed with acoustic neuromas. I learned everything I possibly could about them, and I found the Acoustic Neuroma Association of Canada website. I emailed them and told them a little of my story to see how they could help me with resources. The next day, this woman called Carole Humphries, ANAC’s Executive Director, came into my life. She phoned and talked to me and made me feel validated.

For the next three months, I drank good wine, ate bad food and cried. I was so angry at what life had given me, and that’s how I coped. I talked to Carole a few times and we had some good laughs. I drove every doctor’s receptionist crazy. Even the lady at the MRI clinic was getting a little upset with me, and I apologized as I got her to send discs to a whole bunch of neurosurgeons that dealt with acoustic neuromas. I couldn’t believe I had to wait months to see someone. I learned that I didn’t qualify for Gamma Knife because of the size of my tumour. Waiting was the hardest part. I had even considered going to the USA for surgery. I was the epitome of needy chick!

Fast forward a few months to when I finally got appointments with Dr. Westerberg in February 2018 and Dr. Akagami in April, both in Vancouver. By that time, I got myself together and started to accept the fact that I had a brain tumour. Dr. Westerberg’s approach gave me confidence, and when I saw Dr. Akagami, I felt even better.

During the months of waiting and appointments, I was forced to find some humour because that’s the only thing that has got me through this. When Dr Akagami was listing all the complications that can happen during surgery including not being able to swallow; my first thought was “Wow I’ll finally lose those 20 pounds I need to lose!” Or when he was telling me I’ll need weights on my eyes when I go to sleep I thought to myself, well there goes my sex life! That’s so not attractive! It’s been quite a year, but I have grown and learned so much. I have loved so much. I have been loved so much. My husband and I are the closest that we’ve ever been, and the support of my family and my wonderful friends have been unmeasurable. I will be having surgery in September in Vancouver with Dr Akagami and Dr Westerberg. I’m thinking positively that this will be OK. Whatever happens at the end of my surgery will have to be OK, because it’s where life has taken me. I’ve learned to not worry about the small things and except whatever the day is bringing me. It has made me a better and stronger person and I’ve learned to laugh a lot more because that’s the only thing I have to hold onto. I’m in a new club now. The people around me and the people that I’ve met and those who have helped me through this are part of my life forever.

I hope this helps anyone that reads this and is struggling. I truly believe that we are all put on this earth to learn and to grow and to become more evolved beings. Our experiences and struggles are what makes us. I know I am certainly a better person and even though I am extremely scared and anxious for my surgery, I have to let it go and let the universe take over. Thank you for listening to my story, and I hope you learn to embrace whatever life throws at you and not take it too seriously.

I leave you with my favourite words of Deepak Chopra. “Live in the present. The past and the future don’t exist.”