MRI results

The results are in.
They do not surprise me.
The acoustic neuroma shows up as slightly larger on recent imaging.

Studies report:

Acoustic neuromas sometimes increase in size temporarily as a reaction to the Gamma Knife treatment. This is actually a favorable sign indicating a brisk response. Such swelling usually is most obvious between 6 and 18 months after the procedure. It should not be confused with increase due to lack of response in which case the tumor size will not return to the baseline but continue to increase. A definite assessment should be made two years after the treatment: was the swelling merely temporary or did the tumor fail to respond to the treatment?

This increase likely accounts for the increase in the spinning sensations and tinnitus.  I am glad there is so much information available online.  I have read much that helps dispel fear.

The neurosurgeon wants me to have my next MRI in one year.
In one year I expect to be on the mission field in Malawi.
We will have different insurance coverage.
My doctor here can not requisition treatment overseas.
It may well be possible to have the scan done in Africa and sent home on a disc.
but think I will request that the MRI be done at the seven month mark
if we are indeed leaving Canada in August
then re imaging can be done again two years later
when we return home on furlough.
I am leaving this in the Lord's hand for the moment
but will send an email to the neuro nurse in a few days.
Having the test completed on home soil
would eliminate stress and worry in our future planning.

One thing I am certain of
God already knows.
He Is already living in my future.

force field

Travel in our part of the world during the winter months can be difficult, if not impossible.
The temperatures not only moderated but grew unseasonably warm this week.
We had snow, wind and icing on the roads.

The hospital where I was scheduled for my one year follow-up MRI is 2-1/2 hours away.

We chose to drive in Wednesday night and stay in a nearby hotel.

Rick managed the difficult parts of the drive well, but not with ease.  It was a bit trying for both of us.  We relaxed and collapsed in front of mindless television as we settled into our room.

Before I shut down my laptop to check out of the hotel, I typed into my Facebook status box:

MRI day - into the force field I go

and so off to the hospital, wishing I could have another coffee, knowing I had to wait till after.

There were no delays.  The needle for the i.v. line to inject contrast agent was inserted with skill.  I relaxed into the clicking and knocking and tried to ignore the desire to move about to ease the growing pain in my lower back.  Halfway (or somewhere near halfway) through the test I could feel someone take the i.v. tube from my hand and insert the contrast.

Hang in there, I thought.  Can't be long now.

More knocks, bangs, clicks and tones that the earphones can't muffle, and then I heard a voice telling me to watch my elbows as they slid me out to freedom.  I rose without too much residual back pain.

I was told my doctor would have the results in a day or two, though I had been told by the gamma knife centre to expect to hear from them within three weeks.

We spent the next few hours shopping, then made our way back home on still ice covered roads.

Now safe, rested from a good nights sleep, and back to life as usual, trying not think about the waiting.

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.

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