Sunday, August 26, 2012

The Symptoms

I’ve had lots of people ask what made me think something might be wrong. What were the signs that I needed an MRI? 

I’ve done a fair bit of reflecting now that I know what an acoustic neuroma is and how it affects it’s host. And, I am quite surprised how many signs and wonders there have been in the past 15 years, escalating to the past month.

It was the facial numbness in the past couple months that got me worried. That lead to the return to the doctor with a desire to find the cause. But, let’s rewind to the beginning.

For many years I have had a very slight ringing in my left ear. I can remember in the late 90‘s, while studying at the dining room table, thinking the TV was on around the corner with the volume off. 

Can you remember the days before flatscreen TV’s? Do you remember the high pitch tone some of them emitted? As a kid I would hear that noise from across the house, go to the family room and turn off the TV.

But in our house at Avondale, where I was studying, I would often be confronted by a TV which was already off. Hmmm... That’s weird, I would think. I can still hear it. I would turn the TV on and off a couple times. Then return to my studies. Sometimes it would go away, sometimes it would keep ringing. Must be the loud music I listen to...

Then I started noticing it while trying to sleep at night. I would wake up and it would be humming quietly in my left ear. This is when I realised something. I could make it go away. If I concentrated on the sound — focussed on it with all my meditative ability — it would crackle on and off and then stay off. Other times it would just fade until it was so quiet I could barely hear it.

I got very used to managing the sound and often wouldn’t consciously hear it for days or weeks. Then, in a moment of silence, particularly after a very loud day — I would hear it again. 

In 2006 I got a desk job, in a private room with concrete walls and a door. It was quiet. And the ringing was loud. So loud that sometimes I would either wear headphones with music, which made the ringing worse after taking the headphones off, or go outside for a walk to hear some natural noise. 

After over a year of office work, I started having horrendous thunderclap headaches. They would come out of nowhere — attack the middle of my head — and then disappear. Sometimes they only lasted five minutes, other times up to 30 minutes. But, man they were painful. I tried cutting out caffeine, getting more exercise... nothing stopped them. So, in October 2007, I went to the doctor and told him about the headaches. He asked if there were any other unusual things going on in my head. So, I mentioned the ringing. He sent me out to get a CT Scan and discovered nothing unusual. Evidently CT Scan’s don’t see acoustic neuromas. So, he told me I was fine and that the headaches should stop on their own. Which, thankfully, they did. 

But the ringing persisted. The doctor said the ringing was tinnitus and that I could do some retraining to learn to block out the noise. I told him I used to be able to do that, by concentrating on the sound. But now, it was so loud and ever-present, there was no blocking it. I was so used to ringing in my ear, I decided to continue consciously ignoring it. That works most of the time. It’s there, but so what. It’s only at night or when alone in the car or nature when I am driven to distraction by it.

Since 2007 the ringing has been consistently getting louder. It actually surprises me when I listen to it. If I use the old elimination strategy of saying, ok, just listen to the sound - become one with it - find it’s centre... IT IS LOUD! 

Then the facial stuff started. I think it was earlier this year but I’m not really sure. Occasionally I would notice a tear trickling down my left cheek. No reason. I wasn’t sad. Just a tear out for a joyride down my cheek. I have also notice, some mornings when I wake up, the left eyelid takes real effort to open. Often I just leave it closed and let it wake up slowly.

Some months later, I noticed when I was drinking that some liquid would dribble out of the left corner of my mouth. Not much. Just enough to need to wipe so it didn’t drip off. The first few times, I didn’t think anything of it - I must have been talking while drinking or just didn’t close my mouth properly, who knows. It wouldn’t happen again as long as I thought about it while drinking. But it started happening more frequently. 

One time, when I wiped the drip away, I realised my lip where the drip came out was numb. I rubbed it. Yup. Numb. Weird. The next time a tear tracked down my left cheek I felt the corner of my eye. Numb. But they didn’t stay numb. It was random numbness.

About a month ago, I decided to go back to the doctor — a new doctor. The doctor listened to my symptoms, sent me out for a blood test and a CT Scan. In that first visit, he suggested it was probably stress. I had thought stress was the cause and was hoping he would say so. Amazingly, after leaving his office with the “stress” suggestion, the numbness stopped. Well, nearly. But it was so different than before the visit that I convinced myself it was psychosomatic — I was creating the symptoms myself to deal with stress. This made a lot of sense to me because I don’t seem to notice or process stress in any conscious way. It just rolls off like water off a duck’s back. So this is what stress does to me, I thought. The blood results came back healthy. It’s just stress, I thought. No reason for a CT Scan. 

I mentioned the stress stuff to my dad in an email and he wrote back asking for a complete list of symptoms. My dad is a very curious and intrepid explorer of all things. So, thinking nothing of it, I emailed him all the symptoms — even making fun of myself for creating them to deal with stress. 

He called and told me to get an MRI as quickly as possible. My stepmom Janet was a theatre nurse for many years and has assisted in thousands of brain tumor cases. She read my symptoms and told my Dad I had all the symptoms of someone with a brain tumor. Get an MRI!

So, I did. Last Wednesday. 
And I’m so glad I did! 
Thanks Dad.

Now I know that everything — the numbness, the leaking eye and lip, the ringing and perhaps even the headaches — were all from this one little growth that has been slowly increasing in size. 

How long has it been in there? Who knows. 
How long will it remain in there? Not much longer!
I am so excited that the ringing is going to stop. Oh, happy day.

It is possible, when they remove the tumor, that I may loose the hearing in my left ear. I may also experience trouble with my balance if that nerve is affected as well. Usually acoustic neuromas are between or wrapped around the auditory or balance nerve. Sometimes, when they grow, they affect other nerves and the brainstem.

Luckily the facial nerve is not damaged yet. I still have full symmetrical use of my face. But, should the facial nerve be damaged by the tumor removal, I may have some facial paralysis. But, that is very unlikely. 

Another thing that is very interesting was discovered during the tests run by the neurologist at the hospital last Wednesday night. He held out a finger in front of me and said, "How many fingers do you see?" 

I said, "Two." 

He said, "You see two fingers?" 

I replied that if he had asked, "How many fingers am I holding up?" I would say one - because obviously you are only extending one finger. But I see it with a second one right next to it. He then tested my vision with a red ball on a stick. 

I have double vision. I had not noticed this previous to the test. I have noticed that reading takes more concentration. But, I hadn't noticed that there are two of everything. My mind just combines them. 

Ever since that night, I have been having fun testing my eyes. It is obviously a nerve being affected by the tumour, not my eyes causing the double vision. My brain is receiving a bogus message. How can I be sure of this? Well, if it was a visual double image, covering one eye should remove one of the two images. It doesn't. When I cover one eye, I still see two images next to each other. Even weirder - it's not only on the left side. Covering either eye produces the same double image. And looking with both eyes open does not create four images - just two. So.... interesting, eh?

On Tuesday, I have an appointment with the surgeon at Saint Vincent’s Hospital in Melbourne. Then I will know more!


  1. It's a fine line between deciding that there is something wrong and just feeling paranoid. It seems amazing to me that you had symptoms for so long but didn't find out what was wrong until know, I guess we just have this amazing way of getting used to these 'oddities' that we experience. Dad's (almost) always know best so I am glad that you have such a great one and that you chose to listen to him. I have had a number of people ask me how you knew and now I can fill them in.

  2. As my son Mikey would say: "I know, right?" The symptoms built up so slowly. It was like the tide coming in...

  3. Anonymous7:24 pm

    Thanks for taking the time to write this!! We will keep you in our prayers and I know alot of people will be keeping you in theirs! Thinking of you and your family, Tamika, Luke, Jye and Kayla xx

  4. Your welcome. I have decided to blog my way through the entire process. Writing helps me process things. And this needs a lot of processing. Doh!
    So check back regularly, I'm going to try to make an entry every day.
    Thanks for your prayers.

  5. Similarly, when I was diagnosed I learnt that a million things going on with my body werent normal... Or just a weird thing, but symptoms of the breast cancers that were growing! Its dascinating and almost exciting to go "oh THATS why....."

  6. True.
    It's been a real learning experience!


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