Friday, December 25, 2009

Merry Christmas to All!

It's Christmas day!!  It was a wonderful day.  It was a quiet day, relatively speaking.  We were greeted with about 12cm of snow on Christmas Eve, so hubby worked late and then went in from 2 am to 3 pm, and with more snow today, he's back in at 2 am tomorrow morning.  It's the first time I've ever spent the majority of Christmas day by myself.  I accomplished a fair bit - 4 loads of laundry, dishes, I baked meringue cookies and cleaned the bathroom.  Hubby stopped home once around 10 am to pick up some coffee and a bagel.  Being Christmas the only thing open is Mac's corner stores.

Hubby was home around 3:30 and we opened our presents to each other.  I got him a shop vac, at his request, 2 DVDs, some chocolate truffels and his Stitch ornament that I actually picked up in Toronto last month.  He got me cookie cooling racks - beautiful ones!!, two pair of flannel jammies - my request, an electric can opener - another request, CSI season 8, my favorite Lindor mint chocolates and White Christmas on DVD. 

We went to dinner at hubby's mom's - our first year without dad.  I teared up a bit, but held my composure until we came home.  We both got spoiled rotten by our family, yet again.  I have enough gift cards for a shopping spree at the mall with my dear sister in law Jenn.  Plus a fantastic new "parts sorter" in which I can put all of my beads.  Hurray!!!  (I still am not quite done sorting them !!)

So I'm snuggled on the couch with my blanket, my ice pack, and White Christmas on the TV.  Hubby is asleep.  It's another busy day with dinner at my grandparent's tomorrow.  I'm making a small ham and mashed potatoes.  I love being together with my families on Christmas, or anytime for that matter.

Friday, December 18, 2009

I'm not ready. Are you?

I'm trying, really I am, but I'm not succeeding very well in getting ready for Christmas this year.  I've made 1 pan of Nanaimo bars and some peanut butter krispie squares (marshmallow free).  I still have plans for butter tarts, a Nanaimo for my grandparents, ginger cookies - because what's Christmas without ginger cookies! and shortbread.  I also bought almonds to make biscotti, but I think those will just have to wait until the New Year.

The tree is up and it has lights, thanks to the help of my husband. I went through 1 tote of the 3 full of decorations so far.  It's taking me 4 days to decorate a 5' tree; I don't care.  I'm minimizing the decorating this year.  Just don't have all of it in me.   Oh, and I hung the lighted tree and candy cane in the window - 1 whole suction cup each!

The good news is I am done shopping.  Unless we run out of milk, I don't have to set foot in a retail or grocery store until after the holiday.  I even wrapped hubby's big present on Tuesday.  I kinda had to, I couldn't hide it anywhere!  I put it downstairs under a blanket while we had dinner that night and then quickly wrapped it to prevent someone from peeking.

Dinners.  Plural.  Could have been 3, but 2 conflicted.  Christmas day will be at my mother-in-law's; it's our first Christmas without dad and it's already hard.  I hope for a good day.  I'm responsible for dessert - so Death by Chocolate it is.  It's a favorite.  And no one has ever noticed I make it with soy milk!!  Ha haha!! What they don't know won't hurt them.  Dinner #2 is Boxing Day with my family at my grandparents.  This year I get to do a small ham and potatoes.  And my mum has sent an email to the family that the men get to do dishes... we'll see how that one works out.  Oh well, I don't mind dishes as long as I have rubber gloves on.

We went to my staff party last Friday - it was very good.  The food, the conversations, the skit put on by one of the partners and some of the staff - it was all good.  I didn't drink, well I don't drink much anyways, but I felt like I had the most miserable hang over on Saturday.  I think it was just being out, late, and not being accustomed  to it.  My head pounded all weekend.  Saturday night I ended up taking Tramacet before bed.  Then I didn't sleep well.  That drug does wierd stuff to me.  I feel like my arms and legs won't move.  It's very disconcerting.  Sunday was not much better.  I had to basically just sit on the couch with an ice pack behind my head until after lunch.  I couldn't move.  I went downstairs to do laundry and I thought I'd never make it back upstairs.  The rest of the week was a little better, no major headaches, but lots of pressure.

And on a good note, my doctor finally completed the OHIP pre-approval forms and they have been sent off to see if I can get coverage to travel to WCC for an assessment at least if not the surgery.  I should hear after Christmas.  Keep your fingers crossed!!

Sunday, December 6, 2009

Snow, craft show and beads!

We had our first snowfall on Tuesday.  I didn't test out how my neck and head would feel shoveling - hubby had the driveway done before I got home.  It was nice to see the snow.  It's been so grey and dreary, the white at least brightens things up!

It was a busy week.  I was called to teach at the pool on Tuesday as well as my regular Thursday class.  Only 1 week left until Christmas break.  My last class will be the 10th.  I'm sad to say good-bye to teaching, but I know I can't continue to teach and end up with 4 day long headaches because of it.

I took Friday off work as Friday and Saturday were the annual craft show at West Thunder Community Centre and I have had a table there for the last 4 years. Thought it was 5, but I remembered now that it was 5 years ago I started at 55 Plus.  I didn't do the 55 Plus show this year.  Here's a pic of my table this year.

So today was getting back to normal.  Just before I went to gentle Yin yoga this morning I started to find the kitchen table which has been buried beneath boxes of beads, wire, pliers, ribbon and glue for over a month.  On one of my trips downstairs with a load of stuff my bead box was balanced on top of the pile.  It's an old bead box - I know my mum gave it to me when she stopped beading and I remember it from very early in my childhood.  It has 12 drawers with up to 3 dividers in each.  12 drawers that don't latch shut. Each drawer is about 3" x 8" x 1.5" deep.  12 free sliding drawers hold a lot of beads.  10's of 1,000's you might say...  And you would know it hold's 10's of 1,000's of beads when you drop your bead box in the spare room in the basement, upside-down and all but 2 drawers fall out.  I let out a  loud ARGH!!!  and hubby asked what was wrong.  I told him I dropped the bead box.  He had to come look.  I should have taken a picture, but didn't.  I grabbed the dust pan and a broom and started rolling everything together.  I had a few minutes to shoveled the some of beads into a shoe box.  I had to leave it to go off to yoga.  And here is the box after I finished finding as many as I could...

The vacuum found most of the rest, and I'm sure there will be more underfoot when we move the Christmas totes out next week.  Guess who will be sorting beads into Ziploc bags instead of her bead box....

Hubby is nearly done the casing and baseboard in the spare room upstairs so we can move the furniture back in and set up the Christmas tree in the front hall.  I have tomorrow off work so I hope to get either peanut butter squares or nanaimo bars made at the least, and the rest of the kitchen tidied up.  Plus I have massage therapy at 3:00.

I also saw my family dr. this week to send a pre-approval form to OHIP to hopefully cover the cost of surgery at Wisconsin Chiari Center.  Hopefully he sends it out soon and I hear from OHIP before Christmas holidays. Cross your fingers, your toes, even your eyes!!!  I'm only $98,475 away from the $10k!

And, get this, I have only had 1 headache in the past 12 days!!!! Hurray!!!!!

Saturday, November 28, 2009

Another week passes

Well, the two day headache made itself into a four day one last week.  On Monday I had a regular visit to my family doctor for my regular prescription refills and one new one.  He decided to try me on Tramacet for the headache pain as regular Tylonel and Maxalt have no effect on Chiari headaches. We also discussed my surgical options at Toronto Western and he is confident the TWH is the best place to have surgery.

Monday night as my headache raged, I took 2 Tramacet.  Warning: Do not take this drug if you need to perform any of the following: drive, walk, talk, think, speak or move!! WOW!  I was sitting on the couch waiting for it to kick in, but it had already kicked in.  I wanted a drink from my glass not a foot away on the side table but I thought if I moved my arms they would fall off.  Yeah, it's strong.  But it did help the pain.  And Tuesday I felt hung over, but I didn't have any pain.  Not a bad day, all in all.  Next time, I'll only take 1 though and see if that is enough.

So where am I at in my decision about surgery?  I've decided I want the decompression surgery.  I've had to give up more and more activities lately because doing them causes terrible headaches.  Now, I'm trying to decide if I want to have it done in Toronto by Dr. Gentili.  I'm weighing all of the information I have carefully.  And I'm investigating one more option: the US.

I've read about and contact the Wisconsin Chiari Center in Milwaukee, WI.  I know the costs would be well more than we can afford without winning the lottery, but I had to inquire.  They were very nice and wrote back to me to send down my MRI and reports and they would review them and let me know if I need more testing. They ballparked a surgery cost too - $75k to $100k US.  Anybody have some extra pocket money lying around??  I will apply to OHIP for preapproval to see if I was to go to the US if they would cover any of the costs.  I see my family Dr. on Thursday to see if he will agree to sign the request.  Wish me luck.  IF I'm preapproved I would like to at least have the opinion of a true Chiari specialist - Dr. Dan Heffez - who coincidentally trained in Montreal.

I had to make a tough decision this week as well.  I had to give my notice at the pool.  Just teaching the one aquabics class a week leaves me with a headache for anywhere from 1 to 4 days.  It's just not worth it for the 45 minutes and $19.  When I'm better, after surgery and recovery, I would love to go back to teaching.  It has been a big part of my life - taking it for the past 14 years and teaching the past year.  I am still going to yoga on Sunday mornings until Christmas - it's free with a donation to Christmas Cheer and they are all easy, beginner classes.

So, time, a little more of it, will tell what OHIP says, and whether or not I can pursue going to Milwaukee for a consult.

Saturday, November 21, 2009


This morning there was another heavy frost.  As the sun came up through the trees they glistened like Christmas ornaments.  It was beautiful.  But the sunlight on my face brought me back to the painful reality of another Chiari headache, now day two.

I'm trying to put everything into perspective.  How much my headaches are affecting my life, how much work or activities I miss, and whether or not the headache was brought on by exertion.  I went through my journals from 2006 through now.  There were 38 months worth of entries.  A good starting point.  So I averaged everything out.

Over the course of 38 months, I average 7.6 days of the month with a headache.  I missed 1.5 days of work or activities per month.  And exertion is a cause of at least 1 - 2 headaches a month....  And those exertion caused headaches may last several of those days.

So, in perspective, I average over a week out of every four in pain over a 3 on the pain scale.  Now, don't get me wrong, that's far better than a lot of people that I've met or read about.  But when I have a headache the pain is bad enough to wish for the surgery.  And when I don't have a headache, I don't want to have the surgery because of the risks involved.

I've faxed a few further questions to Dr. Gentili's office to get a few more answers I need to make my final decision.  I've had some interesting feedback about surgery in Canada vs the US.  I've also e-mailed another doctor to inquire about an assessment in the US.  This is very very very preliminary.  I'm information gathering still.  

I'm still researching and thinking...

Friday, November 13, 2009


I love history, ancient history - Egyptian and Roman especially.  If  it's not 3000 years old, I'm not that interested.  I read about it, watch documentaries, and google for new discoveries found in Egypt.  While in TO we walked past the Art Gallery of Ontario.  We were 19 days too early to see Tut, so I took pictures of me with his poster instead.  Cheesy, I know.  But if I was there on Nov 24 when he is, I'd be foregoing shopping to see his treasures for sure!!!

Outside the AGO was a great status of Anubis.  I was in heaven, for an entire city block!
Other than history, I enjoy a wide variety of things:  riding motorcycles, reading, crafts, cooking, baking, taking and teaching aquabics, and being with my family and friends.  There is no one more important in my life than my family.  I'm blessed with a loving husband, great mum, my brother and his family, my grandma and papa and my mother-in-law, sister-in-law, and brothers-in-law.  (God bless my father-in-law, we miss and love you!)  My best friend Ruth lives 1,600 km away, but when we're on the phone together and when I traveled to visit this summer, it was as though we haven't been apart a day.  My husband and best friend share my love of motorcycles and are part of the reason I ride.  In fact my bike was bought from Ruth.  Unfortunately this summer I found it harder and harder to get out on my bike.  Some days just getting it off of the patio was enough to drain me and then to ride, I was exhausted.  It was disheartening.  I may only ride a hundred km at a time, but this summer I even found that hard.  I noticed the strain in the back of my neck, my shoulders were tighter than usual, my hands went numb quicker than normal, and after riding I was a limp dishrag.

My other activities are somewhat affected as well.  Work, crafts, aquabics, cooking, baking, even housework depend on how I'm feeling that day. There are plenty of days I'm fine, I can do everything.  But if I overdo it, I'm often in pain, or in bed, the end of that day or the next.  And I hate it.  I'm very independent and to not be able to do the 101 things I'm used to doing by myself is taking it's toll on me.

I still haven't made up my mind about surgery.  I've been reviewing my journals from 2006 through now and I'm trying to make a list showing how many headaches I had per month, whether they were induced from exercise or activity, and whether or not I had to miss work or an activity.  I didn't keep as detailed a journal about my headaches as I do now, but there are lots of references to migraines but at the back of my head, pressure and pain after working out or working in the garden.  So it is there.  Some details of the Chiari even before my diagnosis this summer.  Unfortunately, I don't have journals prior to February 2006. Or I could have had a larger data pool.

On days like today, where I had to leave work at 1:30 and crawl into bed at home with an ice pack, I want to have the surgery and make it all go away (hopefully, God willing!!).  But when I had such good pain free days on Monday and Tuesday, I don't want the surgery because I don't want to have any complications or be any worse thereafter.

I'm still weighing my options... Think...think...think...

Friday, November 6, 2009

And the surgeon says...

Well, my appointment with Dr. Gentili at Toronto Western hospital went well yesterday.

Hubby and I flew in and walked up to the hospital, stopping along to the way to drool over some Ducatti motorcycles and Lamborghini's in a shop along the way.

Dr. Gentili's fellow did an assessment, very basic history and viewed my MRI.  The  assessment involved the usual - strength, balance, eyes, ears, throat.  He even checked my gag reflex as lack thereof is a sign of Chiari and more serious problems.  He was very nice, fairly thorough, and answered our questions. He was intrigued by my knowledge of my own brain as I was able to identify my Circle of Willis and my Chiari herniation from the MRI.  Said I had obviously been on the internet, to which I replied, it's my brain, I want to know as much as I can about it. The is no sign of hydrocephalus or syrinx and there is still just enough room for my CSF to flow between the herniation and brain stem. The fellow was of the opinion that I would not need surgery. 

Then came in Dr. Gentili.  A middle aged doctor with graying temples, a nice handshake and an odd taste in footwear.  He reviewed briefly what the fellow had discussed with us and looked at my MRI.  He asked about my symptoms.  How many Chiari symptoms did I feel I had - 6 to 8 of the approximately 30.  He figures 5 or 6.  Not a bad guess on my part.  We talked about the clinical aspect vs the symptoms of Chiari.  Anatomically I have Arnold Chiari Malformation.  It is not progressive, in that the herniation of my cerebellar tonsils will not increase or worsen.  Then we talked about my symptoms.  Were my headaches triggered by anything in particular? Straining, lifting, coughing, laughing, posture, etc.

Dr. Gentili said he has done surgery on people with less, the same and more of a herniation.  The big question he asked: 
How did I find my symptoms affect my overall quality of life? 

Surgery, he said, would be based on how I felt my symptoms affected my overall quality of life.  When the quality of life diminishes, then surgery is warranted.  The choice was left up to me.  Do I want to go ahead with surgery because the symptoms I experience are affecting my quality of life, or do I wish to wait and see how my symptoms progress.  He said he would operate, late spring likely, should I decide.

Dr. Gentili also asked why I came to Toronto Western.  I replied that he was highly recommended, my family doctor had had surgery at TW and my sister-in-law's friend had recently undergone brain surgery for a tumor and she couldn't speak highly enough about the care.  And I said although I am confident in Dr. Haq's skills, I am not confident in our local hospital system.  Dr. Gentili diplomatically said that he knew Dr. Haq and would not comment, but understood my choice to find a hospital with an actual neuorsurgery department.

Dr. Gentili also advised me about the risks of surgery.  Infection, CSF leak, meningitis, stroke are all very low risk.  As they are not interfering in the brain itself, the decompression surgery is fairly basic in terms of brain surgery. It is not like the removal of a tumor where it has attached itself to my brain and they are removing it.  The will open the back of my skull, remove a portion of bone, open the dura, remove part of the horns on C1 vertebra, possibly C2 as well, use a dura patch from my thigh, and stitch me back up with a bigger space from my brain to live in.  2 to 3 days in hospital.  He said 2 to 4 weeks minimum off of work sometimes up to 8 weeks, depending on the person and if any complications arise.  Full recovery in 6 to 8 weeks but can be as long as 6 months with complications.

So, I didn't get the cut and dry answer I was seeking.  I am still undecided on whether or not the have a 6 - 8 inch zipper (that's what the incision is called) in the back of my head and the decompression surgery performed.

I'm going to take until Christmas and monitor my current symptoms more, review my journals from 2006 to now as I have tracked headaches etc. since then.  And think, think, think.  Like Winnie the Pooh - think think think...

Monday, November 2, 2009

3 More Sleeps!!

Is it bad to be excited to see a doctor?  Especially when your brain is involved...

Well, I am excited and hopeful for some answers when I see Dr. Gentili on Thursday at Toronto Western Hospital.  I received a confirmation phone call today from his assistant confirming my appointment time.  When you have to fly 2 hours to the appointment, you'd better be sure the doctor is going to be there!!

Hubby and I will leave on the 6:45 am Porter flight to Toronto City Island and that lands us around 8:30 and only 2 km from the hospital.  I've already looked up the street car schedule for Bathurst St. and it runs about every 10 minutes.  So we can hop the street car if it's miserable weather.  Otherwise, I'm not opposed to walking.  I walked almost 5 km to the bus depot from Union Station toting my luggage in July.  I can definitely do it without the luggage in tow!!

My appointment is for 10:30 and hopefully the doctor won't be too far behind.  I'm anxious to know what he thinks.
 - will he perform surgery?
 - is this a now, or wait scenario?
 - are there more tests which should be run?
 - if he were in my position, would he trust him to do the surgery?
 - how many Chiari patients has he treated?
 - overall prognosis?

And I have a few more written in a notebook I'm taking along with the MRI disc.

I already couldn't sleep last night so I can just imagine the next three nights I won't get much sleep.  But I'll plug into my iPod and listen to my hypnosis if necessary.  I'll update once I'm home from the big city!!

Wednesday, October 28, 2009

48 hours of pain

OMG I haven't felt pain like the past 2 days in years.  And I've never had a headache like this.

It started on Monday, I felt weak and tired and on the verge of fainting or collapsing at work so I left at 3:30.  I came home and lay down for an hour or so, and when I got up just around five, my head was positively throbbing.  I'm talking 8 or 9 out of 10.  I took a Maxalt right away and thought I'd be fine as it usually works within an hour or so.... Right?

Wrong...  I couldn't eat dinner.  I couldn't even think about food.  Hubby fended for himself with some soup.  I had Gatorade and arrowroot cookies. I went back to bed around 8:30 and the pain was so bad I was bawling.  Not "there's tears in my eyes" but "I can't control the tears streaming down my cheeks" pain.  And I didn't want to cry because it doesn't help, usually just makes it worse.

I was up and down all night.  Changing ice packs every two hours.  A gravol to settle my stomache.  And more Maxalt at 3 am.  My head didn't hurt in the front above my eyes or in back around the spine it hurt ALL OVER!  An overinflated balloon on the verge of exploding.  Well by 7 am when my alarm went off I knew there would be no way I could go into work. So I called the HR department and left my boss a voicemail and changed my voicemail and crawled, almost literally, back to bed after calling hubby to say I would be staying home.

I don't know if I slept.  I remember getting a fresh ice pack a couple of times before 11:30 when I called hubby to stop off at Walmart on his way home from work.  I needed another ice pack to add to the rotation and more Gatorade.   I wasn't eating anything so I was at least trying to stay hydrated.  Hubby came home and we threw the now third in our collection of ice packs into the freezer.  I grabbed a movie and an ice pack and snuggled into our bed and half watched, half dozed through Memoirs of a Geisha.  I didn't care if I watched or slept.  It was just on to distract my mind from the incessant pain.

My mum called, or I called her, I can't remember, about going to aquabics - that'd be a no.  She told me to go back to bed and call her in a while. I took a third Maxalt in 24 hours (the maximum recommended) and lay down again until hubby came to bed around 8.  I got up realizing I was kinda hungry.... Hmmm.... what to eat?   Back to arrowroot cookies and more Gatorade.  It is the only thing I could imagine stomaching.  I called my mum and we discussed whether or not I should go to emerg for some iv drugs.  I didn't want to go anywhere.  Especially with our hospital on high screening for H1N1.  I didn't want anyone else's germs.  So back to bed with a fresh ice pack I went.

When I got up this morning, now 37 hours from the onset of my headache, it still raged.  I had to have a shower.  I nearly passed out doing so, but after a few minutes I felt level headed enough to make a decision not to drive to work.  I called my sister in law and caught her as she headed out the door.  We luckily live 6 blocks away from each other and work for the same law firm.  She picked me up and off to work I went.  I arranged with hubby to pick me up at noon; I knew I'd never make the full day with all the pain.

People who haven't experienced chronic pain don't understand what you're dealing with when you tell them you've had a headache for 2 days straight.  Not, oh gee, my head's aching either.  I'm talking my head is going to explode if anyone whispers too loudly or if there's a blink of light in the room.  People at work are nice enough, but they just can't comprehend the effort it took me to not just stay in bed again today.  I went in and did what was important and necessary.  I feel very responsible for my duties at work and I'm not trying to shriek them.  Hubby collected me at noon and I came home, had some toast!! (not just arrowroot cookies) and crashed for another hour or so.

By the time supper rolled around I felt alright enough to have some chicken noodle soup and boiled some pasta for hubby.  My head has finally eased to about a 2 / 10 and I can actually say that I feel marginally better.  But after the last 48 hours, any less pain is a vast improvement.

Friday, October 23, 2009

Ahhh.... the weekend

Having battled with a cough / cold / flu all week, I'm happy the weekend is here.  I know health professionals are saying stay home when you're sick in case it's H1N1, but they didn't have 2 major files close on Tuesday....

Oddly I haven't had a real headache all week.  My system was too busy fighting cold germs to worry about plaguing me with intense skull pain - works for me!!  But coughing for 12 hours straight Monday and Tuesday were enough of a reminder of my Chiari - my head wanted to split wide open with each cough.  And it was uncontrollable even with Buckleys!

Beyond a cold, there's not much to report.  The weather's cooled off with some wet snow on Wednesday, but it didn't accumulate.  It's been grey and dreary and not a lot of sunshine.  We did have a beautiful red sunset last night as I walked to the pool.  Sad though, sun's down by 7 now, soon to be earlier as we get closer to December 21st....  I hate grey days.  They're so uninspiring.

I'm gearing up for the December 4th and 5th craft show at West Thunder.  I've got a few new beaded angels made.  And there's a parcel at the border I have to run and get this weekend with a few more supplies.  I really have to get downstairs and take inventory of what I have left from last year and get busy on more stuff for this year.  Good thing I'm only doing one show this year!

And countdown is on again.  13 days until I see Dr. Gentili!!

Monday, October 19, 2009

The Struggle for Balance Continues

I'm trying to find between doing and not over doing it.  If I do a little extra, I end up with a headache...

I taught aquabics twice last week, plus went bowling on Friday and spent most of Saturday snuggled in bed with ice packs. The Maxalt only helps sometimes, not all.  If it doesn't help in the first two hours, it's not going to.  So the only solution is ice packs and a dark room.

This last few weeks has been worse than usual.  I think the combination of stress and fatigue has made my headaches more frequent and more intense.

I'm so looking forward to seeing Dr. Gentili on November 5th.  I just can't wait to know what his opinion is.  Will he have the same mindset at Dr. Haq - surgery, sooner than later? Will he even treat Chiari? Or refer me to someone else? Are there more tests needed?  Am I imagining all this pain?  Like some have said - is it just all in my head?  I have a list of 20 - 25 questions for him, and I'm not optimistic that he'll take the time to answer all of them, but I'm hoping he will.  I'm just looking forward to having answers so maybe I can figure out the next step.

Thursday, October 8, 2009

Appointment Postponed

Received a phone message today from Dr. Gentili's office at Toronto Western.  My appointment has been moved from October 26 to November 5th.  Apparently the Dr. cannot see patients on the 26th.

I left my work number for the receptionist and she did call me back this afternoon.  I'm booked for a 10:30 appointment, still giving us plenty of time to get into Toronto.  Then I had to call Porter tonight and change the flights - $50 fee, per person, per flight! Yeouch!!  At least there is a seat sale which ate up 1/2 of that.

Now I have to go back to my family dr. and get him to resign another Travel Grant as he already signed and dated the one for October 26th.  Oh well.  Needed to go back for the end of the month for prescription refills anyway.

Not much else to report.  I had a headache this morning, but thankfully the Maxalt kicked it.  The back of my head was still sore and my neck was tender, but it was more manageable.  Taught aquabics tonight - only 4 ladies, including my mum.  I'm icing my neck now and I'm off to bed soon.

Wednesday, October 7, 2009


That's my blood pressure.

And the Dr. says it's not that low.  He also said when he was screening young women entering the army in World War II....  WWII!! Yes, my Dr. is that old.  He said young women with low blood pressure would just pass out while waiting in line.  Comforting.  So feeling dizzy is just because of my low blood pressure.  His suggestion - salt.  Hmmm, not a great fix in my opinion.

But on a good note, he did approve my travel grant for hubby as my companion for my 2nd opinion visit at Toronto Western hospital on October 26.  Only 19 days to go!!

I've actually felt fairly well the last few days, some dizziness from the low bp, and the usual fatigue, but (touch wood!!!!) no headache.  The pressure at the back of my head is somewhat higher than average but it's not causing a headache right now.  Could be the rainy, cloudy weather. But it's been a couple good days, thankfully!! : )

Sunday, October 4, 2009

Another week sails by

It was quite a week.  Busy, tired, but thankfully only headachey part of it.

Tuesday was a bizarre day.  I woke up without a headache  But my left arm was completely numb.  My face was numb too.  I went to work and was having trouble thinking and seeing and speaking clearly.  I get strange symptoms sometimes with a migraine, but not usually without.  I felt bad enough to call hubby and have him take me to the emerg.

I was in quickly, but the nurses and doctor were all insistent that I had a migraine with no pain. I told the dr. that I have Chiari; he'd heard of it but had to go and look it up when he looked up my June MRI.  The dr. said he didn't think Chiari caused numbness or vision disturbance or anything I was experiencing.  He said I had a migraine without the headache.  He had an iv put in (the poor student nurse!! she got the vein the first time, but I bled all over the place!) and they treated me with Maxeran.  He said it is similar to the Maxalt I take but when I looked up Maxeran it is for nausea moreso than the headache pain.  It's used with chemo patients to help them combat nausea.  Oh well.  I did feel better - at least my arm was not numb and I could focus better.  But I was extremely irritable. And got a headache from trying to lie on the gurney without a pillow...  Strange emergency ward - no pillows - ever!  At least we were in and out in 3 hours.  And slept good that night for a change.

The rest of the week went well.  I felt alright for the most part.  Some fatigue as always.  Some pressure headaches after carrying files at work.  I taught aquabics on Thursday - first class of the fall session.  I felt good to be back at the pool, but I was exhausted at the end.

Count down is on - 21 days to my TO trip!!

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...