Sunday, September 27, 2009

The End of a Rough Week

My headache lasted through most of the week unfortunately.  It came and went in waves. And each time I exerted myself it came back with a vengeance a short time later.  I had to leave work at 1:00 on Tuesday, just couldn't do it.  I made it through the rest of week though, and hosted my very successful Pampered Chef party on Friday night.  But the exertion on Friday laid me out on Saturday and part of today.  And with a lingering symptom.

I get numbness in my face, but it usually only lasts for a few minutes to an hour at the onset of a migraine.  This time the numbness lasted for hours at a time.  Like I'd been to the dentist for freezings.  My inside of my mouth and my cheeks were numb all the way to my eyes.  A very unnerving sensation.  If it comes back tomorrow I will go to the walk in.  It's not a new symptom, but it is far more persistent than I've ever had.

I'm hoping that by trying to have a quiet day today I will be alright this week.  When a headache lasts a week it takes a lot out of me. And it makes me feel unproductive and lazy.  I'm still adjusting to the limitations which I find myself facing with the Chiari, and more and more just in the recent months.

Monday, September 21, 2009

If I only had a brain....

Wait!! I DO have a brain.  And I have pictures to prove it!!  So here's my brain.  Nice eh?  Well, look at the back of my skull - it's kinda curved in.  And where the skull ends and the vertebra go into the skull is the Chiari malformation.  I've added a line to show where my herniation is protruding.  The NS said 6mm to 7mm.

So my headache last night and today are mostly caused by this herniation.  Today was a 7/10 day.  I made it through work and dinner, but had to take a Maxalt because I was nauseated and really sensitive to light.  Time to go find an ice pack and check out the rest of my MRI pictures. I have the disc until we go to Toronto on October 26th.

Sunday, September 20, 2009

Wonderful Weekend

Ahhh... Summer.  In September.  The weather has been glorious for the past couple of weeks.  Better than we've had June, July and August. The only shame is that the sun goes down earlier and earlier every night.  The weekend was no exception in wonderful weather.

I got out on the bike on Saturday for about 75km or so.  Just cruised.  I have my favorite rides - highway 130, River Road and Oliver Road.  Some great corners.

And I did well - no headache or fatigue the whole weekend, until about an hour ago.  It's humid and warm in the house and my head has decided it has been quiet for 3 or 4 days so it's time to wake up and annoy me.  It's just pressure right now, and a dull ache.  Maybe I'm sympathizing with mum who has had a headache all weekend.  If it progresses before bed I'll grab an ice pack and take a Maxalt and hope it is gone in the morning.

Wednesday, September 16, 2009

The Wheels on the Bus

I will be the first to admit I don't handle stress well.  Or change for that matter.  My life is fairly orderly.  When things are thrown at me or my routine changes my whole body suffers.

Today was not meant to be my day.  At least it wasn't Monday.

Hubby had car trouble on Monday so needed to drive my truck the last two days to work.  He works 4 am to noon so carpool is out of the question.  Yesterday I got a ride from Eugene, but today I thought I'd take the bus.

Well, I haven't taken the bus in about 3 years.  I still worked at my old job.  It's the same bus to my current job.  I caught it at 7:30.  And thought I knew the route.  Guess what.  In three years the route that has been the same for 20 years was now changed!!

I missed my only opportunity to get off close to my office thinking the bus was supposed to loop back and stop directly in front of my office (there's a bus stop there.  I see the #8 James there every day).  Well, I was mistaken.  I ended up at the mall and then the university, then the hospital...  All bringing me further from my office.  I called work to tell them I'd be a little late. I wound up all the way at the Port Arthur bus depot!! All the way across town from my office!  Little did I know that the bus I was on becomes another bus once it leaves the mall!  The mall is now a "depot"!

A sheepish me went and asked the driver the best bus to get back towards my office the quickest.  Take the #2 Memorial to Central Ave. and have the driver call the southbound #8 James to wait at Central for me.  No problem!! Right?  WRONG.

The driver was very helpful and radioed the #8 James at least 4 times.  No one answered.  She let me off at the stop I needed and said to just hurry around the corner to the next stop and the #8 James would be there any minute.  The #8 James never showed up.  I kept walking as it was in the direction of my office and I know where the stops are along the way.  No bus.  It had to have already passed before I got off the Memorial.  I walked to work the rest of the way in shoes not at all designed for trekking.  I called hubby on the way and he chided me for not calling him when I figured out I was on the wrong bus after Intercity.  What's done is done.  I don't like to put people out and I hate asking for rides when I'm perfectly capable of getting there on my own...  Well, may not perfectly capable with bus routes!!

I was 40 minutes late and quite upset by this point.  I'm not late for work.  Even through ice storms and blizzards I've only ever been at most 5 minutes late.  I calculate for delays.  I had an hour to get to work when I set out at 7:30.  I got in a 9:10.

I said I don't handle stress well.  And I don't.  I was shaking and anxious and feeling quite ill when I finally got to work.  Then I had to explain what happened.  And being me, couldn't hold back my tears.  I felt silly for not checking the schedule ahead of time. And then sillier when 3 or 4 people at work chided me for not calling them for a ride this morning.  My one boss had a good laugh and jokingly commented that my picture and name where going to be put on the bulletin board with big letters LATE underneath.  I am very fortunate to work with such a good group of people.  My darling husband called to make sure I made it to the office safely and given my ordeal took me out for lunch.

Stress is murder on my body.  Besides having walked the almost 2km in sandals not made for walking, the stress has absolutely drained me.  I wanted nothing more than to come home for a nap but made it through my work day.

I had a hot bath tonight and gave my poor feet some TLC.  As tired as I am right now in 2 hours when I want to go to sleep I'm certain it will evade me.  The joys and frustration of tinnitus, possibly caused by the Chiari, keeping me awake all night.

Saturday, September 12, 2009

A bad day to be a tomato

Or just about any vegetable that I tried to grow this year.  Blah.  As I picked the tomatoes I came across blight, splits and a few with blossom end rot.  Not very good yield this year either.  I picked the green tomatoes and put them in the basement to finish ripening. I have 1/3 of the yield of last year.  Sad.  Won't even get a full batch of sauce.  I've already thrown out 2 dozen or more tomatoes that were too rotten or blighted to salvage.  Not a good day for the tomatoes.

The carrots are dismal too with rust worms infesting the roots.  You can peel off the affected areas but when the carrots are tiny to begin with, there's not much point.

The onions did okay.  Most of my tops were bent over so I pulled them today and they are tied together to dry.  I hope they don't rot like last year.  If they do, I'll write off the whole gardening season this year to the lovely weather we had all summer.

So some of my pots are empty.  I decided to dump those empty into the wheelbarrow and blend the soils so hopefully I won't have blight next year.  What would be nicer is if my garden were in the ground. But in time - once the new shed goes up.

Moving the pots and soil around I had the strangest sensation - like a burning at the base of my skull.  It wasn't painful, just strange.  I've probably overdone it today and will pay tomorrow.  But cross your fingers that I will enjoy Sunday without a headache.

Tuesday, September 8, 2009

What is Chiari Malformation??

When the ENT first said I had Chiari Malformation I didn't understand the words.  So here, in layman's term I will try to explain what exactly is going on with my brain.

Basically my skull is too small for my brain.  (hee hee!! I'm  too smart for my own darn good! And I have MRI pictures to prove it!)  And because my skull is too small it causes pressure at the back of my brain.  Your brain is supposed to sit inside the skull.  The cerebellar tonsils (yes, your brain has tonsils too) extend down through the base of my skull.  So my brain stem is cramped.  And the pressure causes a multitude of symptoms:  headaches ranging from mild to extreme in the back of the skull; dizziness and nausea; blurred or haloed vision (without the acid trip); tingling in your hands and feet; tinnitus or ringing in your ears; numbness in your face; difficulty thinking cognitively;  fatigue, sleeplessness and general malaise.   More severe symptoms include seizures, a build-up of fluid inside the spinal cord (known as syrinx) and an assortment of other ailments.  Fortunately I do not have the more severe symptoms.

Thus far my diagnosis is Chiari malformation with herniation between 6 - 7 mm.  Yes, millimeters may not be very big, but think about it - your skull should hold 100 marbles, but only grew large enough for 99.  The last marble is still there but is being squished at the back of your skull.  Ouch.

So, in a nutshell, that's how I describe Chiari.  For more information check out my links.

Monday, September 7, 2009

The Journey Begins

I'm new to this - blogging and Chiari malformation.  Let me entertain you - I hope you'll find my posts interesting.  If not, well such is life.

I'm 33.  I was diagnosed with Arnold Chiari Malformation in July 2009 by sheer coincidence.  I was referred to an ear nose and throat specialist for tinnitus in my left ear.  Following an angio MRI of my brain a 6mm herniation of the cerebellar tonsils was found.  The ENT said he could not be any assistance to me and recommended I see a neurosurgeon.

Fast forward to mid August.  I had my first appointment with the local neurosurgeon. (Amazingly quick!) After reviewing my history and my MRI he had one solution - surgery. The decompression of my skull to be precise.  And  it's not that I don't trust doctors locally (and well, I don't) I asked my GP to refer me to a NS in Toronto who has more experience in this type of surgery.  I got an appointment date the day after my referral was faxed down - I see the TO NS on October 26, 2009.

I've been reading lots of blogs, joined 2 support groups, and researching all kinds of sites on the web. I've met a few people online  in Canada with Chiari too.  I'm a sponge soaking everything up until my appointment in October.
I'm not a witty writer like some other Chiari patients.  I'm not a pool of knowledge like others.  I'm just here to be me and write about what I'm dealing with and how I'm feeling about it at that time.
Thanks for reading...