transcription 4711236 rt acoustic neuroma association · and this is a nice diagram showing where...

Acoustic Neuroma Association - Hearing Issues Associated with Acoustic Neuroma

Company: Acoustic Neuroma Association

Conference Title: Hearing Issues Associated with Acoustic Neuroma

Moderator: Melissa Baumbick

Date: Thursday, 30th March 2017

Melissa Baumbick: Welcome to the second webinar in ANA’s 2017 spring series. We are honoured

to welcome Doctor Ravi Samy, Neurotologist and Doctor Lisa Houston, Audiologist, both of the

University of Cincinnati Medical Centre as they present “Treatment of Tinnitus and Hearing Loss

in Patients with Acoustic Neuroma.” I am Melissa Baumbick, the Communications Specialist for

the Acoustic Neuroma Association and your moderator today.

Before we get started, I want to let you know that all attendees are in listen-only mode, and will

remain that way throughout the webinar. There is a chat feature in the Control Panel on your

screen that can be used to type comments or questions while Doctor Samy and Doctor Houston

are speaking. On some browsers, that chat window is closed by default. To open it, please click

the blue talk bubble in the bottom left hand corner. We will dedicate the last portion of the

webinar to answering questions - as many as we can.

There will be a recording of this webinar that includes the audio and all PowerPoint slides

available next week in the member section on the ANA website. There will also be a written

transcript available. Please watch our website and social media websites for notification that the

webinar has been uploaded and is available for viewing. As you know, this webinar is being

hosted by the Acoustic Neuroma Association. ANA is a patient/member organisation providing

information and support to those dealing with acoustic neuroma diagnoses since 1981. Our

programmes include a quarterly newsletter, patient information booklets, a network of local

support groups, our website and social media sites and these informational webinars. Recently,

ANA launched its new patient registry, which is now live. This registry replaces the patient

surveys we have done in the past and you can now view responses of fellow acoustic neuroma

patients when you complete it. By participating, you are providing information to encourage

medical research that will improve the lives of AN patients. To participate in the registry, go to the

ANA homepage at www.ANAUSA.org and click on the ‘Learn more and take the survey’ button.

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Finally, I’d like to introduce our speakers. Doctor Ravi Samy is a Neurotologist at the UC Gardner

Neuroscience Institute and the Director of the Skull Base Surgery Fellowship at the UC College of

Medicine. He is the Director of the cochlear implantation programme at the University of

Cincinnati Medical Centre, and an Associate Professor of Otolaryngology at the College. Doctor

Lisa Houston is an Audiologist with the University Of Cincinnati Department Of Otolaryngology,

Division of Audiology. She was recently appointed cochlear implant coordinator in 2012, and she

is an adjunct Professor with the University Of Cincinnati College Of Allied Health Sciences.

It is now my pleasure to get started and turn the webinar over to our presenter. Doctor Samy

please go ahead.

Doctor Ravi Samy: Thank you Ms. Baumbick. Good afternoon everyone. It is a privilege and an

honour to present to you today. As you see here, we have our e-mails on the slide, so please

don’t hesitate to reach out to either one of us if there’s any questions after the webinar is over. It

is my pleasure to have Doctor Houston here with me today. She and I have worked together for

almost 12 years now, and it’s really been a team concept and approach. And I think that’s one of

the takeaway messages for people with acoustic neuromas - it does take a team of individuals to

work together for patients to help them with whatever symptoms they may have and hearing loss

and tinnitus are a big part of that.

So, this is one of my favourite quotes from the legendary Helen Keller, who many of you know

and have heard of. She was born both deaf and blind. When you lose your vision, you lose

contact with things. When you lose your hearing, you lose contact with people. I often think of

hearing loss as being an invisible disability. When someone looks at you, he or she does not

know you have hearing loss. It is very important to correct the hearing loss for a variety of

reasons, and hearing loss is the number one birth defect. And as we all get older, it also grows in

importance and significance to where probably 60%-70% of the population 65 or 70 or older also

deal with this problem. So my hope is that as we go through this, you realise that hearing loss

does affect a lot of people, not just patients who suffer from acoustic neuromas.

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So many of you here are suffering from an acoustic neuroma or have had one dealt with or have

a loved one or family member that deals with this. And this MRI scan on the left side here shows

an acoustic neuroma. On the right side, you see temporal lobe. You see the tumour here on the

brain stem. And this is a nice diagram showing where the tumour is. Now you’ve probably seen

the MRI scans of acoustic neuromas before and have seen how small or larger these tumours

can get. What’s impressive is even though this is a tumour that can be not particularly life

threatening, such as glioblastoma or other malignancy of the brain or skull base that can be

significantly impacting one’s quality of life.

So many of you have probably seen the Acoustic Neuroma Association surveys. Ms. Baumbick

has talked about that earlier as well. Basically, this slide shows how the symptoms that were

looked at back in 1983 all the way to the most recent one in 2014 really haven’t changed. The

majority of people that come in and get checked out by their primary care physician, audiologist

and eventually their neurotologist is because:

1. Hearing loss

2. Tinnitus; and

3. Balance disorders and dizziness

Both hearing loss and tinnitus are number one and two, and they’re still of incredible importance

regardless of whether a patient has had a tumour treated or not.

So when you see a slide such as this - and you’re seeing this is an axial MRI scan showing a very

large tumour on the left side - one of the reasons I want to discuss the medical options first is

because I’ve noticed over the years, I’ve had patients who’ve come in and they’re bothered by

their hearing loss or they’re bothered by their tinnitus. However, I’ve got to make sure that before

we address treatment options and their symptoms, they need to realise that I’ve got to focus on

the most important things. So whether it’s surgery or radiation therapy, observing the tumour, the

wait and scan method or even chemotherapeutic agents - we talk about using aspirin for example

to potentially reduce the growth rate of these tumours - or patients with neurofibromatosis type 2

or NF2 for short, they can also have different medications given. Regardless of these

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treatments, patients can still suffer from hearing loss and tinnitus, and that’s important to

remember.

I think what’s fascinating, as you look over the era of time from 1983 through 2014 how much

things have changed. That early on, the translabyrinthine approach was the workhorse

approach. People used this for almost anyone who had an acoustic neuroma. And now I can

see much less commonly are patients undergoing these approaches. That maybe half of the

patients now roughly are getting surgical treatment as opposed to all of them back in 1983. And

now we’re seeing a greater number of patients are undergoing radiation therapy and just

observation - a wait and scan approach. And so these are all - once again - while these are all

reasonable options depending on the patient’s tumour size, regardless of what we choose

hearing loss and tinnitus are always going to be a concern for patients.

So when I see a patient such as one that has bilateral acoustic neuromas - this is an axial MRI

scan with contrast - you see two large tumours here. While the hearing loss and tinnitus are

important, my most important concern for these patients is life. That we need to remember that

life and brain stem function always trump all the other quality of life issues. I think as

neurotologists and those that specialise in acoustic neuroma treatment then the next step is

focusing on facial function. It’s very important to have good patient nerve outcomes. Last is

hearing and tinnitus. And I wanted this slide in here, because I want you to realise how I’ve

looked at this on a medical and surgical standpoint. That it’s not as though someone’s hearing

loss or tinnitus are not important, but I have to prioritise what is important to the patient and

ultimately me to make sure the patient’s longevity of life and risk to the brain stem such as a

stroke are minimised.

My areas of expertise is doing surgical approaches for acoustic neuromas. And in terms of order

of what I think is best for patients in terms of hearing preservation, middle cranial fassa is an area

that I specialise in. It has a very good chance of saving hearing in about 50%-60. Retrosigmoid -

less likely to save hearing, but that’s also an option. And the translabyrinthine approach does not

allow the option of hearing preservation. Monitoring is done in the operating room to ensure the

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patients have not only good patient nerve outcomes, but also good hearing outcomes as well as a

monitoring of brain function and extremities, as these can be sometimes long or lengthy

surgeries.

So one of the things that I hope you walk away from this webinar with is the importance of early

detection. Education leads to earlier hearing tests. So if you see, for example, someone who’s

suffering from hearing loss - either yourself, or a friend or family member. Think about the earlier

you can get a hearing test and it gives the ability then for us to think about options to save your

hearing. And then typically when we see asymmetry - and Doctor Houston’s going to talk about

those hearing tests more - but typically we like to see both colours - the red, which represents the

right ear. The blue represents the left ear. Ideally, these need to stay on top of each other. So

someone that presents with a hearing test like this, I’d be worried about an acoustic neuroma of

the left ear, thus I’d get an MRI with gadolinium to hopefully find the tumour at an earlier stage

and hopefully preserve the hearing for as long as possible.

I think one of the nice things about MRIs over the years and as patients are educating themselves

through the ANA and as doctors are ordering MRI scans earlier than ever before, is we are now

seeing tumours show up at an earlier stage. But now, these are the tumours that it’s much more

likely for us to save hearing. So in 2014, the majority of our tumours were 1.5 centimetres or

less. So that’s fantastic that we think we’re doing a much better job educating patients and

providers to allow us to reduce the change of hearing loss and tinnitus.

And Doctor Houston’s going to go over the different options that are available. Why I wanted this

slide here is because I want you to realise there are a lot of different options that we’ll discuss

and that there is a sense of hope and optimism that should occur for every patient. And I started

this talk off with the great quote by Helen Keller, and I want to finish one with her quote as well.

“Self-pity is our worst enemy and if we yield to it, we can never do anything good in the world.”

So, our hope is that after this presentation as we go through the questions, we give you a sense

of empowerment that you can take charge of your life and your symptoms and that the providers

there are here to help you. And let me hand it to Doctor Houston now. Thank you.

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Doctor Lisa Houston: Thank you Doctor Samy. So I’m going to talk a little bit about hearing loss and

basic types of hearing loss and then focus a little bit more on the treatment options and kind of

how patients present to me after they’ve had their medical or surgical intervention.

So these are some common signs of hearing loss that I hear on a regular basis from patients,

spouses, family members, friends, loved ones. So difficulty hearing on the phone, difficulty

following conversations in large groups, difficulty with the television - so these are common signs

of hearing loss that everyone should be aware of. And that is kind of the red flag to first and

foremost get in and have your hearing tested.

These are common hearing loss questions. So what do we do if we are diagnosed with a hearing

loss? What is hearing loss? Why can I hear, but I can’t understand? How can hearing

instruments help me? What is that sound in my ears that no one else can hear? What is the best

hearing instrument for me?

These are frequently reported concerns from patients, particularly with single-sided deafness or

asymmetrical hearing loss, what happens if something happens? Patients get nervous when they

have a cold or feel full when those are plugged up. They can’t tell where the sound is coming

from. So these are things that we can address with amplification and surgical intervention.

So this is just a picture of the basic anatomy - the ear anatomy. And I think it’s important to

understand that because a lot of times hearing is just perceived as hearing a sound. But actually

the ability to hear is a pretty impressive phenomenon that requires intricate anatomical and

physiological things to happen. So we have here the outer ear, and then we have the middle ear.

And what we’re primarily going to focus on today is more the inner ear, so the cochlea and the

hearing nerve - vestibular nerve - facial nerve.

So there are different types of hearing loss. There’s no same hearing loss there. But we’re going

to particularly focus today on sensorineural hearing loss. A lot of times patients will come in and

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say I have nerve deafness, or my doctor told me I have nerve deafness. So when we look at the

anatomy of the inner ear, when we say sensorineural hearing loss, we’re looking at the cochlea

as well as the hearing nerve. And these are the most common types of hearing loss -

approximately 95% of the population that has hearing loss is sensorineural. And this can be

caused by age, disease, noise exposure, et cetera.

Oftentimes, patients will ask me - what percentage of hearing loss do I have? As a diagnostic

audiologist, I typically quantify hearing loss as far as severity of hearing loss. So we can see at

the top here is normal hearing, mild hearing, moderate hearing loss, severe hearing loss and

profound hearing loss. So here if we were to look at this right ear audiogram, this would be a mild

to moderate hearing loss.

Oftentimes when patients have either a sudden sensorineural hearing loss or patients with

acoustic neuromas they will have what is often termed, single-sided deafness. And that typically

means that one ear is essentially normal. So normal hearing in one ear and the other ear is

severe, profound or the word understanding that ear is so poor that they’re not able to benefit

from a traditional hearing aid. So oftentimes, you’ll hear the word SSD and that’s what single-

sided deafness means.

So this is an audiogram and as you can see the O’s represent the right ear and the blue squares

or X’s represent the left ear. And so you can see that this is an asymmetrical hearing loss,

meaning that there’s a difference between the two ears. And so on the right ear, we have a mild

to moderate hearing loss. And this would be a sensorineural hearing loss, because we can see

that the arrow looking things line up with the circles. So that means that we’re directly testing the

inner ear, and so the inner ear function is lining up with the signal. So in the left ear, you can see

that there’s a significant hearing loss in that ear. So this is what an asymmetrical hearing loss

would look like.

So I like this picture because a lot of times I will get the comment, “Well, I only have hearing loss

in one ear. I have the other ear so I’ll be just fine, right.” Well, we have two ears for a reason, so

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this is a nice picture showing that there are actually benefits to having two ears, particularly

localisation - so knowing where sounds are coming from. Because the sound can hit each ear at

a different time and a different volume, and that will kind of let us know which way to turn our

head. And then there are also benefits in noisy situations so that we get the input from both ears

and can really function better in those more challenging listening situations.

So hearing rehabilitation options - there are a lot of different options for hearing loss - medically

and surgically. But these are catered to each individual patient, their type of hearing loss, their

lifestyle, what they need. So that can range anywhere from hearing aids to CROS and BiCROS,

osseointegrated implants or Baha cochlear implants, or lastly an auditory brain stem implant.

So this is a picture just under helping patients better understand how single-sided deafness - how

it happens and then how these treatment options help. So basically, we’re taking advantage of

the better hearing ear. So on this side, this cochlea is working very well. And on the other side,

this cochlea is not working as well. So via bone conduction, we’re able to cross the signal over to

the better hearing ear. This is called contralateral routing of the signal. So basically, if you’ve

ever had an audiogram and we put that headset behind your ear and put that static in the other

ear, we’re letting you hear through the better ear. So that’s how these devices, the CROS and

BiCROS and osseointegrated or Baha implants work. They transfer the signal to the better ear.

So this is a picture of a Baha. So there are two manufacturers of osseointegrated implants. This

is the Baha. So there’s a titanium implant that is placed into the bony portion behind the ear, and

then an abutment is attached to that, and after the patient heals, we would attach the sound

processor to this device. And so via bone conduction, we’re able to give the patient the

perception of hearing in both ears, and so that helps balance out things like performing in noisy

environments or listening in group situations and sometimes can even help with localisation of

sound.

And again, this is a picture of a BiCROS and how that works. So historically, the CROS/BiCROS

options were wired so the patient had to wear a wire behind their head. And so that was kind of

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cumbersome and bulky and not the most cosmetically appealing device for them. Now you can

see they’re very tiny behind the ear devices that wirelessly communicate to each other. So in real

time, they’re constantly streaming back and forth. So they give the patient the perception of

hearing in both ears, while wirelessly streaming the sound from the bad side to the good side.

So let’s talk a little bit about tinnitus. So tinnitus is hearing a sound in the absence of an external

sound, and this affects approximately 10% of the U.S. population. So, not just patients with

acoustic neuromas or hearing loss, there are patients that even have normal hearing that can

experience tinnitus. And I like this picture because a lot of patients describe their tinnitus

differently. It can be ringing. It can be roaring. It can be something. It can be birds chirping. It

can be crickets. So it’s very important to understand kind of what the tinnitus sounds like to the

patient, and that can also help us when we’re doing masking techniques and things like that with

hearing aids to better hone in on that patient and what their tinnitus sounds like. Many of the

treatments for hearing loss also help tinnitus. So a lot of times, just giving the patient

amplification will help with their tinnitus. And then when they‘re not wearing their amplification, we

can make recommendations of things to try before they’re going to sleep - white noise makers,

noise machines - things like that. So, it’s very important to have some sort of noise input for the

patient to be able to hear that - to kind of not focus on the tinnitus as much. So oftentimes, just

traditional amplification will help patients with the tinnitus.

So there are often lots of different treatment options for tinnitus. I talked a little bit about masking

techniques. So these are where I can fit hearing aids that are amplified to address the hearing

loss, but then also provide masking to kind of help with the tinnitus as well. And these can be

calming sounds. These can be white noise, steady-state noise - again it really just depends on

the pitch and the type of tinnitus that the patient has. But you also want to have an overall good,

holistic lifestyle - getting nice sleep. Stress can make tinnitus worse. Trying meditation and

things like that to really relax and be mindful and kind of reduce your stress when you - because

sometimes a lot of patients will develop anxiety with their tinnitus. And so you really want to make

- really want to address kind of a team approach of doing relaxation techniques, working with the

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neurotologist, working with the patient and really customising the treatment for each individual

person.

So I believe now we were going to talk about doing some questions and then if there’s room at

the end, we’ll talk about a few personal case studies that we’ve helped some of our patients with

acoustic neuromas.

Melissa Baumbick: Thank you Doctor Samy and Doctor Houston. Yeah, we do have a couple

questions, so let’s take a look at those and then maybe we’ll come back to the case studies. We

had one - just going back to what you were just talking about with the tinnitus - about why does

talking about it or thinking about it - why does it make it seem to worse?

Doctor Ravi Samy: I’ll be happy to answer that. So Doctor Houston and I work together as she said

earlier on treating patients with tinnitus. If you look at the data and the literature on patients with

tinnitus, it turns out that some of these same things that you learn about patients who have

chronic pain syndromes that are a good role model - or model I should say - for how we deal with

tinnitus. So it’s almost like focusing on the problem in and of itself can make the tinnitus worse.

So I for example - I have tinnitus. I’m 47 years old. I started having tinnitus about 20-25 years

ago. And for me most of the time, the tinnitus is very, very mild, and if I don’t even notice I have it

or don’t think about it, it really doesn’t bother or impact my life significantly. The only thing I do is

when I go to sleep at night, I’ll turn the fan on. And for the majority of the patients - 90% of

patients that suffer from tinnitus, typically the masking techniques that Doctor Houston talked

about and all the relaxation techniques - reduction of stress, improving one’s emotional

psychologic health - typically gets patients understanding that their tinnitus can be better over

time. And that’s true with the majority of patients. Ninety percent of patients only have mild

tinnitus. I would say about 10% of patients ever get tinnitus that’s more than mild and ends of

being more bothersome to them. So the less one pays attention to the problem of tinnitus

mentally, it actually helps the psychological and emotional outlook.

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Melissa Baumbick: Okay, great. And going back to the discussion on the different types of hearing

aids, there was a question about the Baha and the important of keeping it - I’m sorry - the

important of it being covered with hair. I’m not sure what exactly that means. Is it important to

keep a Baha device from being covered with hair?

Doctor Ravi Samy: Well a couple of things I can talk about with the hair, because Doctor Houston

and I have seen quite a few patients. As she said earlier, single-sided deafness - not only is it

with acoustic neuromas, but we see it with patients who’ve had trauma to the ear maybe from a

car accident for example. Viruses can also cause a sudden loss of hearing. And so we see

patients both older and younger that deal with single-sided deafness and would benefit form a

Baha. What I’ve noticed over the year is typically my younger male patients who wear shorter

hear, so this picture on this slide of this gentleman that has relatively short hair, because he’s

probably in his 40s to 50s, he’s probably going to be less bothered by the look of the Baha. But

what is nice, the Baha itself can have different colours on the sound processor. So if one desires

a black processor or processor to more blend in with the hair, that’s very reasonable. I would say

the important of the hair also for Bahas is making sure that there’s not so much hair around the

sound processor that it causes what’s called feedback, which can affect how the Baha performs.

But I’m very impressed with the Baha overall. While it’s not completely replacing the loss of

hearing on one side, it at least allows patients if someone’s on their deaf side to hear someone

talking to them for example. Because as it vibrates the skull, the sound goes across the skull to

the other ear and can help them know that someone’s on their bad side or their deaf side so to

speak. Doctor Houston, do you want to add anything else to that about the hair?

Doctor Lisa Houston: Yeah, I mean I think the other challenge would just be just hearing your hair

rustling. But a lot of my female patients have long hair, and it doesn’t seem to be a bothersome

to - you can have your hair over top of it to cover it. There really isn’t I believe a medical/surgical

reason why the hair can’t be there. I hope that answers the question.

Melissa Baumbick: And so to clarify are you - with the bone implant device - are you actually hearing

on that side, or does it just give the perception of hearing on that side by transmitting the sound?

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Doctor Ravi Samy: Yes, perception of sound because it transmits to the other side. So as we went

through the different options of how we could improve someone’s hearing - let’s go to a different

slide here - and this is from the ANA survey and you go through all the different options - the

closest we’re getting is - if we’re able to save hearing for example, that’s fantastic. If a tumour

that’s relative small and I’m able to get it early, that’s the best outcome. What we’re starting to

look at, however, are patients - let’s say we preserve the cochlear nerve, preserve the blood

supply to the inner, we’re starting to use at our institution the use of cochlear implants in those

patients. Now the key is to make sure that they also do not have any sign of residual or recurrent

tumour. But the cochlear implant is the one that gives us the ability to try to recreate our normal

hearing mechanisms. It’s probably the closest. But ideally, is if we cannot lose hearing at all with

whatever treatment we choose, that’s the best case scenario.

Melissa Baumbick: Okay. And we have a patient that asked - said that she is wearing a hearing aid

in her affected ear, but it doesn’t help her to understand speech. It does, however, provide

sound. Should she stop wearing it? Is it better to wear it, or not wear it?

Doctor Lisa Houston: So I think she should absolutely continue to wear it. I think understanding

realistic expectations of what the hearing aid is able to do. So the hearing aid is providing her

amplification that could give her sound awareness and also probably if she does have tinnitus

help with that as well. I would consider talking to an audiologist about other options if she’s

dissatisfied with her hearing aid. But I wouldn’t recommend stopping to wear it. But the reality is

that hearing aids can only amplify the sound. They can’t change the function of the inner ear.

And so, that word understand and that clarity of speech when it’s poor cannot be significantly

improved just by wearing a hearing aid.

Melissa Baumbick: Okay.

Doctor Ravi Samy: One more thing I’d like to add that’s been helpful for me working with Doctor

Houston is - she’s always brought up to me the importance of counselling. So what we’ve

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realised over the years, whether it is a hearing aid, whether it is a cochlear implant, it is matching

outcomes to expectations. So if a patient comes in with hearing loss and as I said at the

beginning of my talk - hearing loss is not just associated with acoustic neuromas. It can be

associated with aging, noise exposure and many other factors. That if a patient comes and thinks

that you can put a hearing aid on and then hear completely normally, in all situations that’s

absolutely not correct. So for example, we talked about lifestyle adjustments. So one of my

recommendations to patients whether they’re wearing hearing amplification or a cochlear implant

or other device, is try to have people look directly at you when they’re speaking. So for example,

I have patients that have hearing aids that are actually also excellent lip readers. And so by

having people look directly at you, that often helps in the communication.

Another point is that one that has hearing loss is going to struggle more in noisy restaurants, for

example. And so for example as I said, I’m 47 and I’m noticing now I’m having more difficulty

even though my hearing test is quote/unquote normal. I have more trouble understanding my

twin daughters who are eight years old. One is very soft-spoken. And if we go to a noisy

restaurant, it’s a more challenging environment. So I try to choose more quiet intimate settings.

So adjusting your lifestyle is what we mean by not putting yourself in situations that makes it hard

to understand people.

Melissa Baumbick: Okay. Perfect, that makes good sense. We have a patient that talked about

localisation and the fact that that is very important to his active lifestyle. And he uses a CROS

system right now, but the microphone is on his deaf side directly behind his ear. Would a Baha

provide better localisation in that case?

Doctor Lisa Houston: Not necessarily. So they’re both kind of still doing the same thing. So a lot of

times localisation - it’s difficult to improve it, because we do have two ears for a reason. So with

these devices, CROS, BiCROS or Baha, we’re still using the better hearing ear. And so typically

for localisation purposes, just because the sound is hitting one ear then the other, you’re still

going to probably think that the sound is coming from the better hearing ear. So a Baha and a

BiCROS provide about the same benefit for localisation. And there’s some early research to

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suggest that cochlear implants can help with localisation if you are able to get the hearing back

up to a normal level. So that’s why we have two ears.

Melissa Baumbick: Okay. And are there particular deciding factors on determining which system is

best?

Doctor Lisa Houston: So when I do an SSC consultation or even an asymmetrical hearing loss

consultation, we’ll typically demonstrate the devices in the office. So I will demonstrate a CROS,

BiCROS, a hearing aid and typically a Baha or a Ponto on a headband. So I will let the patient

walk around with it in the clinic, or even sometimes let them take it home over the weekend just to

hear how it sounds before they proceed with surgery. So, it’s kind of a group decision. It’s

something that we make with the neurotologist, with the audiologist and also the patient. So

ultimately, we want the patient to do what they think is best for them and their lifestyle. But we

will demonstrate all the devices in the clinic.

Doctor Ravi Samy: The other thing I would add - and I brought this slide back up - that’s very

important to think about is Doctor Houston mentioned earlier the different levels of hearing loss.

People often ask about percentages of hearing loss. But it is easier or her and for me to think

about them from the mild, moderate, severe to profound level. And it’s not only on the one ear

that may be deaf by - due to acoustic neuroma or the treatment, but we also have to think about

the other ear. So for example, if someone on this graph is in the profound level, they are not

standard hearing aid candidates, especially if they have that in both ears. And people need to

realise that this is incredibly important part for us to look at. So the flip side - if someone has mild

hearing loss due to the acoustic neuroma or due to aging, then we would not recommend a

cochlear implant. So this is an incredibly important aspect of the treatment. So as a patient, one

needs to know, okay, where is my hearing level - on the mile level, moderate level or so on. And

the other thing that Doctor Houston brought up that’s also important is the clarity issue. So we

use a test called the word recognition score. That’s how clear the sound is. And as that

gentleman - that example was used earlier - if someone has poor word understanding, then they

have challenges in terms of understanding the sound - for example, talking on the phone. So this

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graph, for example - what we’re seeing here, the right ear is the better hearing ear than the left

ear. However, this left ear the word recognition score is probably also quite a bit worse than the

right ear. So at that point, if I saw this patient had an acoustic neuroma and let’s say they had a

small tumour that does not require treatment right away, then I will say, “Okay, I’m going to have

you see Doctor Houston and we’ll go over the different options.” And there isn’t necessarily one

right or wrong answer. And she’ll spend a lot of time with that patient saying here are all the

different options available.

Melissa Baumbick: So an audiologist - and I’m asking this question just to make sure that everyone

is clear on this - is the right type of doctor to see when trying to determine what the best options

are as far as hearing aids and that kind of thing.

Doctor Lisa Houston: Yes. I mean, I work closely with Doctor Samy and so if I see a medical reason

why that patient should be seen by a physician, I will make sure that that happens. But as far as

talking about all of the different devices, non-surgical or even surgical cochlear implants - Bahas -

it is important to talk with an audiologist about those things.

Melissa Baumbick: Okay. And I wanted to ask another question about - since we’re on this

frequency page - there was a patient that had surgery that resulted in mild hearing loss on the

affected side. But as the year went on the hearing continued to degrade to the point that high

frequencies were no longer heard. So would a hearing aid be able to ring back those high

frequency sounds?

Doctor Lisa Houston: It depends. I would actually want to see the audiogram before I would make

definitive suggestion. But yes, hearing aids today can do something called frequency lowering.

So basically, picking up where those areas are really bad and shifting them over to where the

hearing is a little bit better, so giving the patient the perception of hearing those high frequencies.

However, as it gets to a significant point of high frequency hearing loss, that can also affect the

word understanding. And so we want to make sure that we’re not giving false hope in that if we

give those high frequencies back, will your word understanding improve - not necessarily. It will

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just give you awareness of hearing those higher frequency sounds. But again, it really depends

on the type of hearing loss and how severe those high frequencies are.

Melissa Baumbick: Okay.

Doctor Ravi Samy: Melissa, if it’s okay with you - sorry to interrupt - I was going to have Doctor

Houston and I go over a couple of case studies, because I hope it illustrates a couple of different

options that are available, especially the more interventionally oriented or surgically oriented. Bu

these are a couple of things that we see with patients who have acoustic neuromas relatively

frequently.

Melissa Baumbick: Yes, let’s definitely do that.

Doctor Lisa Houston: So, I like this case study because this woman is a complete inspiration, and I

love when I see here on my schedule because she’s just so positive. But given the life-changing

events that she’s been through and she still remains to be so positive is amazing to me. But

she’s a 35 year old female with NF2. She doesn’t benefit from traditional hearing aids because

her word understanding is so poor. I think she did wear a hearing aid in the better hearing ear for

a while, just for sound awareness. So deaf on the left side from tumour resection, and then she

continued only hearing in her right ear for many, many years. And then she presented in our

clinic in October of 2016 for consultation as far as what to do next from a medical standpoint.

And so she received radiation of the right acoustic neuroma. And then the plan was to do a

cochlear implant in that ear. And so, cochlear - this is kind of something new that we’re doing and

in my clinical experience, the patients that - where their tumour has been radiated and then they

receive the cochlear implant - they do actually do well with the cochlear implant. But it is

important to setup realistic expectations for the patient as well. So I e-mailed this patient and I

said, “Just tell me a little bit about - you’ve had the implant for a month or so - tell me about what

it’s done for you and your family.” And so the next slide shows the direct quote from the patient

that says she didn’t realise what she was missing until she had the cochlear implant and now it’s

here best friend. She can hear her kids’ laughter. She can hear her husband snoring - I believe

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she said. So, she’s been activated for 16 days and every day is better and better. She’s created

t-shirts, so she’s selling t-shirts that say, “Life sounds good.” And it’s just kind of given her an

identity and something that she’s very passionate about and really improved her quality of life.

So, she’s still in the beginning phases of the cochlear implant, but so far so good. So a cochlear

implant is an option for patients with acoustic neuroma, but that has to be on a case-by-case

basis and a team decision as far as the best treatment option. You want to add anything Doctor

Samy?

Doctor Ravi Samy: No, I think Doctor Houston absolutely was correct in saying that it is a challenge

for us at times - more so with the patients with NF2. And what we forget is - we talk a lot about

single-sided deafness as it relates to acoustic neuromas, but people often don’t remember that

the other ear is at risk for losing hearing. That as people are living longer and longer lives, people

are getting into their 80s much more routinely now, that they are going to suffer from hearing loss

in their so-called good ear. And so, when we look at someone at how can we best help that

person, how can we best rehabilitate the hearing loss and give them a good quality of life, we

have to rely on not only the side affected by the acoustic neuroma and the level of hearing, but

also what can we do to aid the other side. There’ve been times when Doctor Houston or I have

actually seen patients with acoustic neuromas where that’s actually the better hearing ear. And it

turns out the other ear is the worse hearing ear. So there may be times when we actually put a

cochlear implant on the other side. Or maybe, we’ll use a BiCROS for that patient. So it really

depends on each individual patient, and this is not anything that needs to be rushed for the

patient. The patient needs to spend a lot of with his or her neurotologist and audiologist, because

there isn’t always just one right answer.

Doctor Lisa Houston: And I think too to point out, the thing that I love about our team is that -

oftentimes patients are told there’s nothing we can do for you. And I don’t think that’s a good

thing to say to anybody. But I think if you sit down with the patient and really talk to them about

what they need and what their expectations are, you can really kind of come up with a treatment

plan, so that you don’t feel like there’s nothing they can do so I just have to deal with it. So, you

know there are options out there for these patients.

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I think the next slide shows how a cochlear implant works. So a lot of times, patients think

implant is just a part on the inside. So, it’s a surgery and then you have normal hearing again.

But if you recall back when I talked about the ear anatomy, a lot of anatomy and physiology is

responsible for us not only being able to hear sound, but understand speech. And so the

cochlear implant has two parts. It has the implant that actually goes into the cochlea, which is the

electrode array. And so you can see here that this is the electrode array that is surgically

implanted into the cochlea. There is a receiver stimulator. So that is this portion right here. And

then there’s the speech processor. So the processor basically picks up the sounds and

processes it, send it through this wire to the coil, through the skin to the internal device, and then

the internal device stimulates the cochlea and then the hearing nerve. So this is what allows for

that ability and clarity of speech, whereas with hearing aids, we’re just making the sound louder.

That being said, a cochlear implant can take a lot of time to get used to because you’re retraining

your brain to hear in a different way.

And then the next thing we’re going to talk about is auditory - or total implantable cochlear

implants. Do you want to talk about that Doctor Samy?

Doctor Ravi Samy: I thought this was a neat slide you know when we look at patients who have

acoustic neuromas, while it’s not a common occurrence for them to receive a cochlear implant, I

think what is neat - I hope that people walk away from this webinar - is that technology continues

to improve. There are treatments that are still coming online that are helping our patients get

better and better. And I think we’re probably about five years away, hopefully, from doing clinical

trials with completely implantable devices, so that there is nothing external, and so we can put a

device in. And we’ve been involved with numerous clinical trials ourselves. So, my hope is that is

something that can be done as part of a clinical trial at least within the next five years.

Doctor Lisa Houston: So this next slide is another patient that we’ve seen in the clinic recently - again

NF2. So, for those of you that don’t - neurofibromatosis 2 - so that’s when the tumours are

affective both sides. She was treated with a right cochlear implant initially, and she didn’t receive

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benefit from that. And as the tumours grew and the disease progressed, she became blind as

well. So not only was she hearing impaired, but she also was blind as well. So she

communicated by finger spelling into the hands of her loved ones, family members, physicians, et

cetera. And she lives alone and has two children. So obviously, the first and foremost concern

for her is safety of just hearing sounds in her home, sounds in her environment, her children and

things like that and so how can we optimise her hearing the best that we can so that she can

have a little bit of some input from her senses. So she received - well I’ll let Doctor Samy kind of

talk a little bit about the scan here and then also, she received an auditory brain stem implant.

Doctor Ravi Samy: So, we have several pictures here. The first is an MRI scan - this is an actual

MRI scan so it’s as if the patient’s lying down on the scanner looking directly up at the ceiling, and

you can see this is where the tumour was on the right side. And as with a lot of patients NF2, you

can also find enhancements in other parts of the skull and you have to look for tumours

elsewhere. This was through what’s called an extended milo fossa approach, where we resected

the tumour that way. And you can actually see the implant going into the brain stem here. And,

this is a CAT scan - a CT scan - and it shows the electrode in the brain stem region. Now this is a

really neat view of just a plain film x-ray from the side of the implant, after it’s placed. And, here’s

another view of the electrode going into the brain. So, it has been exciting for me to have

patients such as this young lady who was very hard for me to see in clinic from the standpoint of

how tough her life is. And she comes in with an aunt. And, the fact of her being able to hear

voices now, water running, the turn signal, footsteps, whether the television is on or off and the

fact that she’s a mom, I’m hoping that she continues to grow and develop her hearing skills. And

it is rewarding to see patient’s quality of life improve significantly. And then this is just another

view of the auditory brain stem implant from the outside here. And this is the electrode - the

paddle as we call it. This is a diagram of someone’s right ear. You can see the outer ear, ear

canal - as Doctor Houston showed you earlier - the eardrums, the ear bones and the cochlea.

And so for these patients, the cochlea, the cochlear nerve, the blood supply to the cochlea is

gone. So that fact that we’re able to put the paddle into the brain stem and giving them the gift of

hearing them is really rewarding.

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And so I think these two examples tend to be a little bit more extreme or unusual from the

standard acoustic neuroma patient. But I really reiterate and like what Doctor Houston said,

which is that there are always options now to help patients with hearing loss, whether they’re

suffering from acoustic neuromas or not, that there are things that can be done to improve

someone’s quality of life.

Melissa, questions from the audience?

Melissa Baumbick: Yep, we’ve had a couple more. There’s been a lot of questions about protecting

the hearing that you have left even in the good ear - mostly around - you know, are you doing

anything bad to your good ear by not getting a hearing device? Are you leaning on it too heavily?

Does it somehow protect the hearing in your good ear if you do have a hearing device that helps

you to hear on your bad ear? I think people are thinking in terms of muscles and depending too

much on muscles and then they kind of change the way that they work. So if you can speak a

little bit to that, I think that would be helpful.

Doctor Lisa Houston: Sure, yeah I do. Obviously, that’s a very good question, right. Because you

know the fear is when you do have hearing loss in one ear, what if something happens to the

other ear. But the beauty of our auditory system, our brain, is that we develop compensation

strategies. So, we’re able to compensate if we were to lose hearing in one ear, the other ear

takes over. I don’t think there’s any risk in that happening that the other ear would be affected. I

think the biggest thing is to avoid super noisy situations for a long period of time. So I think, you

know mowing the grass, noisy concerts - things like that - you would want to protect the other ear.

We can’t predict the future as far as if something would happen to the other ear, but no of course,

we wouldn’t suggest walking around with an ear plug or any sort of device to help save the other

ear. It’s doing its job. It’s doing what it’s supposed to be doing. So, you’re not really putting extra

strain on it or anything like that.

Melissa Baumbick: Okay, great.

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Doctor Lisa Houston: Did that answer the question?

Melissa Baumbick: Absolutely, yeah. I think it does. Like I said, there were several questions about

that, so I just wanted you to speak to it a little bit. But, we’ve had another question about hearing

degradation after surgery. And then we’ve had a couple about hearing degradation after radiation

treatment. So, does it - even after the surgery to remove the tumour, why would hearing degrade

after that point - continue to degrade?

Doctor Ravi Samy: Well that is a good question. It’s interesting. If you look at the studies out there,

the majority of the studies show that if you save hearing - let’s say from a milo fassa approach for

example - the majority of patients still have preservation of hearing in the long run. However,

don’t forget if you for example, you’re 40 years old and you’ve had an acoustic neuroma removed

- a milo fassa route - and the hearing’s been preserved and that 40 year old lives for the next 40

or 50 years, he or she will still lose hearing due to aging. So, one has to remember that that ear

while it’s preserved doesn’t mean it can’t get insults or get trauma from other things. So if that

person - so we talked just a second ago about noise protection as Doctor Houston just discussed.

If I have a patient who’s around guns a lot, for example. I’ll say, “Protect your hearing,” whether

they have an acoustic neuroma or not. You’ve got to avoid noise trauma. So noise, aging,

certain medications can cause hearing loss. So the majority of patients once they have hearing

saved, as long as the tumour does not come back should do well in the long run. Now it’s

interesting because patients who whether they have surgery or observation or radiation - even

patients undergoing the wait and scan method of treatment or observation - they can still lose

hearing with an acoustic neuroma, even if it doesn’t grow much or at all. On the radiation also,

while radiation can save hearing in the short run, studies have shown that as time goes on since

the blood supply to the inner ear is so delicate, that the radiation probably affects the inner ear

and hearing mechanism. And these are things to talk to with your neurotologist, radiation

oncologist and audiologist, because each person has to decide what’s important to them. And if

they don’t want to undergo surgery for example and would rather undergo radiation, that is a very

reasonable choice for the patient, as long as they understand the pros and cons of each

approach.

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Melissa Baumbick: Sure, okay. And we had another patient that had a couple questions actually.

This patient is completely deaf in one ear. So, she’s wondering about having hearing assistance

and would her brain - with the hearing assist, it would give her the perception of hearing on - for

her brain - so would her brain think that she could hear in her deaf ear? And then, she also is

dealing with tinnitus and she’s wondering how that can be masked by noise, and if the bone

anchored assist always works or are there cases where it does not work?

Doctor Lisa Houston: Well, I think the first questions is will something help her as far as from giving her

the perception of hearing on the other ear and the answer is yes. So either a BiCROS or the

Baha would definitely give her the perception of hearing on the other side. The tinnitus is tricky

with a BiCROS and Baha, because we’re not actually stimulating the ear that has the significant

hearing loss and the significant tinnitus. Some patients will say just by having the input on the

other side that it will help a little bit, but that’s something that we have to kind of trial and error.

We have done some cochlear implants on patients with single-sided deafness and that has

sometimes helped their tinnitus. So I tell patients it might help it. You know, we just - we don’t

know until we do it. But there is some literature to suggest that cochlear implants can help with

tinnitus. What was the other questions - kind of third part of the question - I forget?

Melissa Baumbick: Hold on - it was about - I’m scrolling sorry - about - do the bone anchored assists

always work? Or are there cases where that’s really not a good option.

Doctor Lisa Houston: Well, I think, you know, there are no guarantees of 100% success rate. I think

there are certainly medical issues sometimes that can arise. It’s very small percentage that can

happen of infection or things like that with these bone anchor devices. But that’s really

significantly reduced with surgical techniques and improvement in the design of the implants and

abutments. That being said, I think you have to quantify what is success with the device, right.

So as long as we’re discussing and counselling regarding realistic expectations and that the

patient understands what the device is capable of and not capable of, I think it can be a very, very

successful treatment option.

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Melissa Baumbick: Okay, and I think this might have to be our last question. There is a question

about the cost for these devices and whether or not insurance covers there. What is your

experience there?

Doctor Lisa Houston: So, I’ll speak to the Baha cochlear implant medical/surgical treatment first. So

typically, those are covered by insurance. So we do have a great team that prior authorises these

devices through insurance. And we do have specific guidelines and criteria that the patient has to

meet as far as their hearing test and that sort of thing. And then as far as hearing aids and

BiCROS, unfortunately, very rarely do insurance companies cover these devices. They’re not

deemed medically necessary, if you will. But there are a handful of insurance companies that will

cover them. The cost of a hearing aid can range anywhere from $1,000 to $3,000 per device - so

per ear. So it can be a very expensive endeavour. That being said, you know you want to talk

with your audiologist about the technology that’s best for you and your lifestyle and sometimes

that can affect the cost or save costs - save money. But yes, hearing aids and CROS/BiCROS

are typically an out-of-pocket expense for the patient.

Melissa Baumbick: Okay, well thank you both so much. We’re at the end of our time today, so that

will have to be the last question. I do want to thank Doctor Samy and Doctor Houston for taking

the time to speak to us, and I want to thank everyone that has attended the webinar. I hope this

information has been helpful and will give you some guidance on your acoustic neuroma journey.

A recording and a written transcript of the webinar will be available to members on our website

next week. Please mark your calendars for AN Awareness Week, which will be held from 7 May

to 13 May. During that week, on Wednesday, 10 May, we will have a webinar on the topic of

tumour regrowth featuring Doctor Jennifer Moliterno and Doctor Jane Vu from Yale School of

Medicine. Please watch our website and Facebook page for details and registration information.

And don’t forget to go to the website at www.ANAUSA.org to participate in our new active patient

registry. Thank you and have a great afternoon.

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