Finally we meet: my first MRI

It took 11 days from my appointment with Dr. S, the ENT, to finally get my first MRI.  I wish I could say getting my first MRI was exciting or emotional or something intriguing.  For me, it was rather uneventful. And by now, I have had three MRI's and they all went about the same:

• Undress in the changing cubicle
• Put dressing gown on with opening at the back
• Put valuables in a locker
• Check no earrings are in
• Go into room when called
• Put key on cabinet
• Earplugs in 
• Lay down on machine
• (this is important) Be sure to bolster knees up.  (Last time I didn't and my back was killing me half way through!!)
• They put that cage around your head
• Close eyes as they slide you into the machine

So you do not have to close your eyes for the MRI.  I just do that because I am a little bit claustrophobic.  It has never been debilitating, but why try to freak myself out?  I have peaked while in there and, well, either I stare at that cage thing around my head or at the white tunnel I am in.  So, I mostly just close my eyes, hold my head still and attempt to sleep.  Thus far I have not been able to fall asleep.

The machine is very loud.  They run a number of scans and each one seems to have a different pattern of sounds, all loud, hence the ear plugs.  The person in the booth does talk to you some, telling you how long each scan will take.  I have not figure out if they expect a response or not.  Am I supposed to talk?  can the hear me?  or maybe give a thumbs up?  I do have ear plugs in and I've lost the hearing in my right ear, so really it's quite silly to try to talk to me.  

Once the scan is over, the anxiety is still there.  When will it be read? When will they tell me the result?  This first scan of course I was very anxious and did not know how long I would have to wait.  Dr. W had said she would be able to get the results of the scan the day I had it.  However, I had to wait a whole day before I found out.  

The scan took place on Tuesday November 22, 2011.  All day I had been waiting to hear and when I finally received a call from my doctor, I missed it.  I called back and left a message but was unable to reach him.  

We had plans in San Francisco on Wednesday night to meet up with family for a big pre-Thanksgiving dinner.  I remember we were in the restaurant, just settling in when my phone rang.  It was the general number for PAMF, so it was one of my doctors calling.  Dr. S had called to tell me that they read my results and that I do have an acoustic neuroma.  There are three treatment options, watch and wait, radiation or surgery.  He would refer me to a colleague at Stanford that specializes in this area.

So again, I did not have high emotion here.  I was not overcome with grief or depression.  I also was not completely dumbfounded and lost.  It was so matter of fact and, well, that explains the hearing loss.  I now have confirmation.  So now what?  It seemed like every step of the way thus far just opened more questions and uncertainty instead of coming to an answer or conclusion.  

My doctor, Dr. W, bless her heart also called that evening to check in with me.  I will have to dedicate a post about her for sure.  So her call, knowing she cared enough to review my results and check in with me gave me such comfort.  It made me feel like she is *my* doctor that cares what is happening to me and is going to watch out for me.  Even though this is not her specialty, I have someone I can talk to that will listen and help me however she can.  

 

MRI with and without contrast: Intracanalicular enhancing mass compatible with an intracanalicular acoustic neuroma, measuring 8.3 x 4.5 x 6.1 mm 

Tracking a phantom

After our first chance encounter, I did not really think about Arnold all that much. With two young kids and a part-time job I keep pretty busy.  Time passes quickly and things like whether the hearing in one ear is slightly worse than in the other ear just don't make the priority.

So about two months later, near the end of October 2011, I scheduled an appointment to visit my doctor, Dr. W, for a number of physical ailments, including asking about my hearing.  Apparently once you pass 30, stuff starts to not work as well as it used to.  I was having muscle spasms along with recurring aches and pains.  I figured I had better check into those to be sure I was not causing any permanent damage.

At the end of my appointment I mentioned my hearing loss.  She checked my ears to be sure they were free and clear.  She said she would request a hearing test for me.  She also said it is a little concerning that I only have hearing loss in one ear.  If the loss were in both ears, she would chalk it up to old age and playing my music too loud.  But, since it was asymmetrical hearing loss, she thought there was a possibility of a tumor causing the loss.

I went straight away up to Audiology and scheduled my hearing test.  They could get me in at the beginning of December.  That was the best they could do and it seemed there was no urgency, so I scheduled it.

About a week later, while working on my computer at my daughter's dance class, I decided to do a little hearing test of my own.  I played music and listened to it through my ear bud headphones.  I left the right ear bud out and listened only with the left ear bud.  Then I put that ear bud into my right ear and could tell there was a significant difference in the sound.  I also did the same with the right ear bud to rule out a difference in hardware.  The music was distorted and much fainter in my right ear.

I would not say I panicked, but it definitely raised my concern level.  This hearing loss is real and I think it is getting worse.   As one of our five major senses, it is not something I am prepared to lose.  I want to get it fixed as soon as possible.  So, I emailed Dr. W and asked if there was anything she could do to get my hearing test moved up. Fantastically responsive on e-mail, she responded quickly and said someone would be calling me shortly and she had asked them to get me in within the week.

The very next Tuesday I had a hearing test with Dr. K.  She found mild to moderate asymmetrical high frequency sensorineural hearing loss in my right ear.  And, my WRS (Word Recognition Score) was really low, only 30%.  She referred me to their ENT department.

So, now I know I have hearing loss in my right ear.  I have an audiogram to prove it.  How do we fix this?  How do I get my hearing back?  What will the ENT say? Will it keep getting worse and worse?  Can I make it get better?  What did I do to make this happen?  So many questions and such uncertainty filled my head and there was nothing to do.  I just had to wait and meet the ENT and see what he had to say.

That Friday I met with Dr. S.  He confirmed hearing loss and suggested we could attempt to treat it with steroids.  Sometimes if they catch the hearing loss early enough, treating with steroids can help, but that was a shot in the dark and I did not like the sound of that.  He was not telling me why I had hearing loss nor that there was a definite plan of action or cure for what was happening.  Seemed like all he could tell me was, "Yup, you've lost hearing in your right ear."  Well, duh?!

He did recommend an MRI.  He touched on Acoustic Neuromas, but said he did not expect to find anything on the MRI.  I guess that was meant to comfort me, but I did not find it comforting.  I wanted to know why I was losing my hearing.  I wanted to attribute it to something real and physical.  I could not accept that it was just going away for no reason at all.  At least if it was an acoustic neuroma that is something tangible and concrete.  Yes, it will complicate everything, but at least the hearing loss will no longer be a mystery.

At this point I knew no more than when I came into the appointment.  I was so confused and frustrated, the last thing I wanted to do was try to explain to someone else that I knew absolutely nothing.  I could not bring myself to call my mom or even my husband.  What was there to say?  

All I could say was there was more waiting.  First waiting for my audiogram.  Then waiting for the appointment with the ENT.  Now waiting for my MRI.  Waiting for what?  Some sort of phantom to finally appear?

A Chance Meeting

The first time I noticed Arnold I didn't even know it was him. It was over a phone call in the airport. 

Ok, actually it was a voicemail, but we were in the airport!  We were on our annual trip to New Jersey to see Greg's family.  We visit once a year sometime during the summer.  That particular year (2011) we were going in early August for Greg's cousin's wedding.

Dad had dropped us off and he had a new headset for his cell phone. He had not tried it out yet, but he was excited to have it and would be able to use it when he was waiting for our return flight. 

Dad had called and left a message on my cell phone. We were busy going through security so I did not know he had called. When I saw that I had a voice-mail from him, I was concerned there was something wrong since he had just dropped us off. So, as we were moving along the people mover I attempted to listen to his message.
 
If you don't remember what it is like in the airport, it's actually quite noisy. There are lots of things going on and all kinds of announcements every few minutes. When I was trying to listen to Dad's message on my right ear, I could hardly understand what he was saying.  I had the volume on my phone turned all the way up, too.  I had a flash of concern.  Greg had been saying for months now that "[I] just don't hear very well," as though if I just tried harder I could overcome such an ailment.  Now, however, I was afraid maybe there was something to these accusations.
 
We reached the end of the people mover where our gate was and the kids found something fun with which to play. With the kids thus entertained, Greg sent me back the other direction to get food.  So I hopped back onto the people mover. I decided to try to listen to Dad's message again since it was quieter, no announcements. I listened on my left ear and heard it with no problem. He was calling to test out his new headset, so it was nothing urgent. 

This raised some suspicion in my mind that something might be wrong.  But, then again, when I had tried to listen to the message the first time, it was very noisy with someone announcing something over the PA system.  I did not have much time to explore what was going on at the airport, so left it alone.

That evening after settling in at Greg's parent's house, I decided to try to listen to Dad's message again on both ears.  In the quiet of the guest room, I could hear the message fine in both ears.  There was a very slight difference from left to right, but it was so little I decided not to worry about it.  Next time I talked to my doctor maybe I would mention it.

What's in a name?

There is a reason behind naming him Arnold.  For those of you that have known me long enough, you know I tend to name important things in my life.  While this tumor may not be important in a positive way in my life, he is in my life and is changing it.  

I also thought it would be so much easier to refer to a name than saying something like, "My acoustic neuroma," which is a mouthful.  Of course as I was doing my internet research I also found that "acoustic neuroma" is a complete misnomer and it should be called a "vestibular schwannoma".  Technically it could get to be a complete mouthful of medical terms that really mean nothing to anyone anyway.  So why not a name?

I believe he technically is considered a brain tumor, even though he isn't actually growing on my brain.  Whenever I think of a brain tumor, the first thing I think of is Arnold Schwarzenegger in "Kindergarten Cop".  For those of you that have no idea what I'm and talking about, a video for you: 

Yes, he actually is a tumor.  No, I don't get headaches from him now but post surgery I plan to have plenty of headaches.  Not so much from Arnold but from the large hole they have to drill into my skull to get to him to help him move out.  Probably not the most precise correlation, but the way I think it works.  So, my acoustic neuroma is named Arnold after Arnold Schwarzenegger and his immortal words, "It's not a toomah!"

Meet Arnold

Meet Arnold.  He is an acoustic neuroma. 
He is a small tumor about 1cm big that has lain waste to the "useful" hearing my right ear.  Useful hearing means I can not understand what people are saying in that ear.  I can still hear sounds, but they are muffled and distorted.  So, really, what I hear is not very useful.

I found Arnold on the MRI I had on November 22, 2011.  On that scan, he measured 8.3mm. The above picture is my MRI scan from November 23, 2012.  Here he measures 12mm.

A diagnosis like this raises so many questions and so much anxiety.  As I was working through this process of discovering my Acoustic Neuroma and what that means for me and my life, I found I did not want to talk about it much.  I was so overwhelmed and shocked and it seems so unreal since I can't just look in a mirror and physically see the tumor.

I am right now 9 weeks away from having surgery to hopefully evict Arnold from my life.  I've found that talking about him to people just does not easily come up in after school or play date conversation.  When I do talk about him, I feel that there is so much that I do want to say and explain that a simple conversation or e-mail does not do it justice.

I also do not want my friends and family to feel I've been keeping this big secret and that I do not want to talk about it.  I've been living with this for over a year now, so I have accepted it and can easily talk about it. 

I also thought this might be too much information and maybe a little to heavy for facebook.  So, I will attempt to join the blogging nation and explain and summarize my own Acoustic Neuroma story.