music only I can hear

Image found at http://www.drew.edu/undergraduate/what-you-learn/music

An overall sense of dizziness continues to be a problem.  Not enough to cause nausea, stumbling or falling, but a spinning uneasiness.  It must be God's own hand that sustains my balance.

Tonight the tinnitus in my left ear fills the entire side of my head, much louder than I'm used to.  Usually if I am listening to other sounds the ringing fades.  But as we watch television the internal noise roars on.

It is as if I am tuned in to a wavelength set just for me.  A music only I can hear. Unfortunately, I cannot choose to shut it off.  I can't not listen.  

Perhaps I can tune in to it, use it the way others use white noise to find relaxation.

My follow-up MRI is scheduled for January 15th.  Hopefully it will show the neurosurgeon what effect the gamma-knife radiation treatment is having.

If you see me dancing when there is no apparent melody playing, don't be alarmed.

response about symptoms

At the end of August, after my last blog post here, I sent an email to the Gammaknife Treatment Centre reporting in about my symptoms.

I waited for reply, thinking I should phone in but also hoping the dizziness I have been struggling with would ease up.

Today I received the following email:

Regarding frequent dizziness, increased tinnitus and your hearing is worse.
We discussed this with dr. Kaufmann….

Continue to monitor these symptoms….if they become worse – an MRI should be done.
However, you should be followed up with a MRI 12  months post treatment.
You should be having a MRI in January,  2014 – looks like we sent Brandon Hospital your requisition.

Glad to hear you are not experiencing facial weakness!!

I think I will wait a bit yet before next contact.  From what I've read the symptoms can vanish as quickly as they appeared and with as fast as time has been moving January will be right around the next corner.  I am, as always, in God's hands.

hearing less

I had to spend a long stretch of time on hold while waiting to talk to someone at airmiles about the possibility of booking a flight.

I should have used the cordless phone so I wouldn't be confined to the desk chair in the den, and be free to wander about the house if I wanted to, but I hadn't thought of that when I placed the call.

The only good thing about the delay was the music they played, not canned, but real and songs that I enjoyed.  My right hand grew tired of holding the phone so I thought I would switch to the left side.  I figured I could switch back to my good right ear when someone was finally available to talk to me.

I was surprised to discover that the hearing in my left (AN) ear seems to have diminished more.  I could hardly tell that there was any sound at all, never mind try to listen to the music.  I put the receiver back to my right side so I wouldn't miss the moment when a customer service rep cut in.  After more than thirty minutes I had other things I needed to do, so I gave up the wait and hung up.

A few days later I tried again, this time remembering to use the cordless.  Once again Ithe sound was fine using my right ear but almost silent using my left.

I'm curious to know if this is the acoustic neuroma reacting to the gamma knife treatment, perhaps swelling as it begins to die, or are there other reasons.

I don't know if this is temporary or a permanent worsening of my hearing.  Only God knows, and time will tell.

By the way, when I finally was able to speak with a customer service rep I found him to be quite delightful, courteous and helpful.  Unfortuneatly there are no flights available with airmiles the time of year I'm flying.

another summer

A year ago

we were in the middle of

the summer of trouble

the water in our well was resisting treatment

I lit scented candles every time I had to run the water

our "good" vehicle chose to die

we were waiting to travel to Saskatoon

to meet with a neurotologist

to discuss treatment options

needed a reliable vehicle to get us there

and back

I was also trying to plan a trip south to visit my mother

battling her cancer and lung issues

problem built upon problem

upon problem

we were all sharp edges

brittle

ready to crack, burn

we stand now

on the edge of another summer

with a newer vehicle

clean water

five months post gamma knife

my mother's struggle over

as she found peace in April

my ears are ringing, yes

my hearing no better than before

but not worse

we have plans, big plans ahead

and hope

another summer

and we can see the colour 

the rains have left behind

3 weeks and a day

Time moves so quickly lately that I am surprised that it has only been three weeks and a day since my gamma knife treatment.

The spots where the frame was attached to my forehead look like little dents.  There is still inflammation that makes the area around them feel like little hills and the tenderness remains.  The spots on the back of my head feel a bit crusted (like a bad case of dandruff) and I am reminded of them with passing pain each time I lay my head down.

Tiredness comes and goes unpredictably as does a vague sense of vertigo. Headaches appear out of nowhere but happily vanish just as unexpectedly. Many times I feel perfectly healthy and energized.

The past few months I've been struggling with hot flashes that had all but disappeared for years.  I am not sure that they have anything to do with the brain issue or perhaps hormones again out of whack due to my intentional weight loss.  I scheduled a time to talk with my nurse practitioner in early March to investigate.

Three weeks gone, the journey continues.

Raised eyebrows

Amazing how many muscles we use when we talk

some for speech itself and others for expression

I'm aware of this now. 

I feel discomfort each time I raise my eyebrows.  

The screw sites on my forehead are healing well, but still swollen and tender.

The two spots on the back are crusty and healing as well, and yet...

my entire scalp feels a bit off, scratchy and sore all over

the top of my head in particular.

From what I've read I don't think this is unusual and should calm down.

Until then, if my expressions seem a bit flat, don't be alarmed

I'm merely seeking to remain as comfortable as possible.

One week later...

I sit tonight, at home in my easy chair
happy to know that a gamma-knife treatment is no longer waiting around the bend
instead it is already six days behind me

Thursday started with a 4:15 wake up call giving us enough time to catch the 5:15 shuttle from the hotel to the hospital.  There were three of us scheduled for treatments all for different reasons and we were given beds in comfy cubicles separated by curtains.  An iv line was started in my hand in preparation for the MRI contrast solution; a local numbing ointment was rubbed on my forehead and my blood pressure was recorded. It was surprising low/normal considering the circumstance. Rick was at my side until the next step.

The next step was the attachment of the head-frame.  The nurse sat beside me on the bed, holding the frame in place while two doctors began their work.  Strange bars were inserted in my ears to help steady things, making it almost impossible to hear.  A second nurse was asking me questions but I couldn't quite decipher what she was saying.  I didn't know if the bars would remain in place, but after receiving injections of anaesthetic the screws were placed and I was relieved to have the bars removed from my ears. 

As the screws were being tightened the nurse beside me held my hands and everyone warned me that things would begin to feel very tight and I should expect to feel a lot of pressure.  Well warned proved to be a help and soon the doctors stepped back, said they were finished and noting that I did very well.

Next step, was a wheelchair ride to the imaging room, wrapped in heated blankets where Rick was again beside me.

A box was fixed in place over the head-frame before the rather brief eight minute MRI and removed immediately after. Back to the gamma-knife area where breakfast was waiting for me and coffee, much desired coffee.  But first the nurse needed to take measurements of my head.  To accomplish this with the accuracy needed another attachment was placed on the head-frame.  This one was my favourite, I alternated between feeling like Elroy from the Jetsons cartoon show or someone getting their hair dried in an old fashioned salon.

I drank my coffee through a straw, nibbled a small waffle and sausage and waited.  I don't really know how much time passed.

Just as Rick came back with a second coffee it was time to move into the room where the gamma-knife machine waited for me.  On my back on the table, with knees propped up on two heated pillows, the head-frame was fixed in place, the nurses attempted to make my neck as comfortable as possible and I willed my muscles to relax.  I was told my treatment would take approximately one hour and could hear the CD I had brought with me playing as the table slipped into the open doors of the machine.

The radiation is painless and silent.  This would have been a breeze but my back which had already been tense with muscle spasms for the past week rebelled no matter what position of comfort I attempted to find.  I turned my knees from side to side and the hour dragged on.  Finally bells rang, lights flashed, the table slid back out and the machine doors closed behind me.  A nurse and doctor walked in to tell me they were not quite finished, I had to be re-positioned for another six minutes of treatment.  My back screamed at having to move, easing up under the nurse's massaging hands.  She allowed me to walk around for a few minutes and then it was lock down time again.  Six minutes more, only six minutes more.

This time the bells and flashing did not surprise me.  The same nurse and doctor helped me sit up and removed the head-frame.  Some people have immediate rebound headaches when the pressure is removed but I was spared that discomfort  The screw holes were treated with ointment and the two on my forehead were covered in small band-aids.  It was over.  Nothing left to do but relax, let them watch me for a little bit, give me follow-up instructions and wait for the shuttle back to the hotel.

So, six days later
the swelling is all but gone
I'm a bit more tired than I'd choose
screw sites are tender and it hurts to lay my head down
but no headache the last couple of days
my back pain is less constant and I'm back to my exercise bike
pedalling until the endorphins flow

Inhale

Inhale.
Exhale.
Inhale again.
Reminding myself to keep breathing.
After waiting for longer than I would have chosen
I am now only hours away from my consult with Dr. Kaufmann.
I'm hoping he can show me pictures of my MRI.
Soon I will know if I am to get a treatment tomorrow or pursue a different course.

I have been searching, reading, praying.  There is yet much to learn.

More to come.  Always more to come....

Wishing time away

Time is precious, a commodity we have in a limited amount.  I usually attempt to make the most of each moment, hour and day, squeezing out life, light and love.

Sadly, today I find myself wishing time away as I wait to meet Wednesday with the neurosurgeon who is the co-director of the Winnipeg GammaKnife Centre.

My consult is on Wednesday with treatment tentatively scheduled for Thursday. I have so many questions waiting to be asked and the uncertainty rattles around in my brain, dancing with the endless ringing in my ears.  Will he decide I am not a good candidate for this type of radiosurgery?  Will he suggest something more invasive or a wait-and-see approach?

I continue to pray for the ability to swap my concerns for a sense of expectation and curiosity at what God will accomplish through this journey, knowing that He indeed has the ability to create order from chaos, beauty from ashes, and work all things into good for His Kingdom.

And we know that in all things God works for the good of those who love him, who[a] have been called according to his purpose. Romans 8:28 NIV

Yes, I have often prayed for patience, and now the lessons come...

Coincidence? Likely not...

Image found at http://www2.le.ac.uk/departments/gradschool/training/events/caferesearch/cafe-brain

As next week's consult and treatment draw ever closer it seems that talk about brains and neurology are popping up everywhere.

A new television series is centred around a neurosurgeon.  In the preview episode his boss handed him a pair of baseball tickets.  When he questioned their source she told him "They're a gift from your acoustic neuroma patient." Impaired hearing aside, the words rang clearly.

A blogging friend Jennifer at Getting Down with Jesus just re-ran a post from a year ago about new cowboy boots and waiting for MRI results and a neurologist's appointment that shared good news.  I sent her a message asking if they had been looking for an acoustic neuroma, letting her know that I had not receive the same good report.

News and science shows seem to be talking more about brain scans... Is this coincidental?  I think not, it is more likely that I am just highly sensitive to what I would have ignored before.  In our selfish human way, we seem to pay attention only to those things that concern us.

So I guess I'm more concerned than I'd like to admit.  Have to stop hiding that.

Don't think I missed anything...

From the time I saw Les Miserables on stage many years ago in Chicago I fell in love and I hoped someone would do a film version so I could repeatedly enjoy the wonderful music.

Today I was able to revel in the fulfilment of that wish.

I admit I was a bit apprehensive, unsure if I would be able to correctly hear the words being spoken and sung.  I feel like I miss so much these days.  For example, last night we watched the Golden Globe awards (yes, many awards granted to Les Mis) and I struggled to hear, asking my husband to repeat and decipher things for me.

For example, at one point I couldn't tell if someone was talking about "short shots", "pure shock" or "pork hocks".  Okay, go ahead and laugh, I would too if I were you. It would be amusing if it wasn't me this was happening to.

God must have known my desires, for the sound in our new local theater is remarkably loud and clear.  I'm sorry if it may have seemed deafening to others, but I was able to hear, and I believe from what I recall of the songs I actually heard the words correctly.

Thankful today for this.  May I always find reasons to rejoice.

Never alone

As I was doing my morning exercise cycling, praising and singing, the words to Mountain of God by Third Day rang clear in my spirit, encouraging my heart to remember that no matter how hard the road before me I am never walking alone.

Even though the journey's long

And I know the road is hard

Well, the One who's gone before me

He will help me carry on

After all that I've been through

Now I realize the truth

That I must go through the valley

To stand upon the mountain of God

Breathe

Breathe in slow
anxiety wants to grab hold tight
stopping the air mid-chest
my thoughts bouncing wild, furious
creating scenarios I can not truly foresee

hearing obliterated
balance compromised
headaches
facial nerve pain
anything that could possibly happen
could also possibly never happen

breathe in slow
I may not know
but I do know the One Who knows all

He has counted each hair on my head
numbered my days
and holds each moment in His hands

I raise my eyes toward the mountains. Where will my help come from? My help comes from the Lord, the maker of heaven and earth  Psalm 121:1-2 Common English Bible

exhale
let it all go

Info about treatment day

I find it hard to refrain from reading as much as possible about acoustic neuromas and the effects and benefits of treatment.  Computers make it possible to study a wealth of information and opinions.

I return again and again to the "Day of Your Treatment" page on the website of Winnipeg's Health Sciences Neurological Surgery Gamma Knife Centre.

You should arrange for transportation on the day of treatment, as you should not drive yourself home after the procedure. Wear loose comfortable clothing that does not have any metal (earrings, belts, bracelets, buckles, zippers, snaps). Do not bring any valuables (jewelry, earrings, watch, money) to the hospital.

Please bring any medications you need to take for the day with you to ensure you do not miss any doses.

On the day of your surgery, you will report to the Admitting Department at Health Sciences Centre, usually between 5:30 and 5:45 am (820 Sherbrook entrance). Then you will proceed to the Gamma Knife suite (room GH 186B). You will remain in your own clothes. Your blood pressure and pulse will be monitored, and an intravenous will be started. Physicians will apply a stereotactic headframe. For this procedure, the skin and scalp will receive local anesthetic, or freezing at two points over forehead and two at the back of your head. The headframe is then secured tightly and you will feel pressure around your head. This discomfort is temporary, and once in place, the headframe is generally not painful. If required, sedation and analgesics (pain medication) are available.

To read more, click here.

I plan on lots of praying and turning things over into God's capable hands, but I'm thinking it might be wise to talk with the doctor when I meet with him the day prior to treatment about the possibility of some light sedation just to make treatment day a bit easier.

I didn't hear any beeping

It started slowly.  At work I always held the phone to my left ear with my left hand  so I could keep my right hand free to take notes.    When I had difficulty differentiating between words like fifty and sixty or twenty-three and thirty-three it made it difficult to accurately record telephone numbers and addresses for my client files.  I thought it was the still new to me Canadian accents causing the problem and didn't worry about it.  I simply asked people to repeat themselves, once, twice, or more.

One day, quite by accident, my left hand was occupied and I answered the phone with my free hand, holding the receiver to my right ear.  I was amazed how clearly the voice came through.  I realized that it wasn't other people's speaking, it was my hearing that was off.  I remained unconcerned but changed my way of working and would scrunch my shoulder up to hold the phone to my right ear still leaving my hand free to write.  This created some neck and shoulder pain, but nothing I couldn't massage away.

Later that same winter I felt flu coming on.  Leaving work early, I stopped at Walmart to purchase a new digital thermometer.  I bought the cheapest one I could find. I mean a thermometer is a thermometer, right?  Once home I got into comfy clothes and climbed into bed under warm blankets.  I opened the package and read the instructions, learning that the thermometer would beep and stop flashing when it had measured my temperature.  I placed it beneath my tongue as directed, and waited.  And waited.  And waited.  "This was supposed to work faster than a regular thermometer" I thought, and somewhat impatiently removed it from my mouth, only to notice it was not flashing but showing a steady 101.5.  "I guess this cheapest version doesn't have the beep" I thought, pulling the covers tighter against the chills and trying to sleep.

When Rick got home from work he found me still shivering in bed.  I told him about the new thermometer and he said I should try it again.  I did as I was told as he wandered off to the kitchen to try to pull something together for dinner.  Again, I waited.  And waited.  "See, it doesn't beep" I shouted from the bedroom.

"Are you kidding me" Rick called back.  "Its beeping like crazy!"

So maybe there really was something wrong with my hearing.  After recovering from the flu I spent some time taking online hearing tests.  The simple tests showed I was missing sounds both in the highest and lowest ranges.

I assumed this was due to ageing and heredity.  My father had developed hearing issues as he grew older.  I grew used to saying "what?" more often but for years I didn't investigate any further.

No music?

We have made a habit of playing worship music in our bedroom through the night.  This fills the room with God's presence and helps me drift to sleep with a sense of being wrapped in His arms.  If I wake I allow the songs to comfort me or more often, prompt me to pray.

Rick almost always finds sleep sooner than me so without adding extra noise I let my heart and mind sing along.

If I turn on my right side, my good ear pressed into the pillow, the music becomes quite muffled but I know that even then my spirit is absorbing the sounds, breathing in Jesus and exhaling praise.

Music soothes, excites, encourages and consoles.  Each life has a unique soundtrack.

Last night, knowing that much of my hearing ability is now impaired, I pondered the possibility of losing music entirely.  I find it hard to imagine.  For someone who has never had the ability to hear, would they know what they are missing?  For one who has lost the ability, would they still be able to listen to music they already know, allowing memory to create sound that nerves can not?

I would guess that someone has studied this.  Thankfully, I am not expecting to lose hearing in my right ear so these musings are simply theoretical.

Moving ahead

When I went to Saskatoon to meet with the neurosurgeon the neurotologist (mentioned in previous post) works with, I was pleasantly surprised to hear that he did not believe I needed the procedure the first doctor had suggested.

He also saw no reason for me to travel out of province instead referring me to Dr. Anthony Kaufman the co-director of the Gamma Knife Centre in Winnipeg.

I am tentatively scheduled to meet with him on Wednesday, January 23 and then undergo Gamma Knife Radiosurgery on Thursday, January 24.

This is all becoming very real...

When you say "anything"

Originally posted 10 july 2012 on Flickers of a Faithful FireFly

There are times we pray safe
"Lord, I'll do as you say, go where you send me"
as long as it fits our schedule
as long as we can understand His request

And there are times we pray dangerous
when we declare
"Lord, let Your will, not mine be done
glorify Yourself in my life
whatever it is you want from me
 I'll do anything"
and in that moment of surrender
we think we can imagine what anything might mean

but...
anything means anything

For now, the anything He has chosen
is for me to walk through a medical condition
I would not have expected
that creates the need for skull base and neuro surgery
this will entail much travel between home
and Saskatoon where my medical/surgical team will be based

Perhaps as a dear friend prayed for me on Sunday
this is more than a medical journey
but a mission as well
I will certainly be meeting many new people along the way

in the days, weeks and months to come
if He asks it of me
you may find me writing
about my journey through the trials of an acoustic neuroma
about consults, surgery and the recovery process

I ask for your patience
your questions
your grace
and for your prayers
that He indeed will be glorified
in the way I walk this out.