Sunday, January 24, 2010

On the Waiting List

I wrote my letter to Dr. Gentili, as I posted last week, and I sent it off on Monday.  I received an email from the Dr. on Wednesday that he's not certain he can get me in for surgery in April, but I'm on the list.  I let him know that I was having 3 MRIs and would send him the results...

3 MRI's - I know last post I only talked about 1.  The head MRI was ordered by the dr. on call at emerg.  I had that one today. On Monday I received a reply from Dr. Heffez about my MRI that I sent to him a couple weeks ago.  He recommended also having a cervical and lumbar spine MRI done to check for narrowing of the spine and tethered cord.  I happened to have an appointment with my GP on Tuesday so I had him order those 2 MRIs as well.  Dr. Heffez also gave me a more accurate estimated cost ~$61,000 for an assessment and surgery.  YIKES!! So far as I know I didn't win any lotteries and I don't think getting a second mortgage is a good option, especially should something unexpected happen and I'm in the hospital longer than anticipated or need more surgery than the decompression.  And I also don't think I could raise and save enough money in a short period of time to have the surgery as soon as I need it done.  And if I'm lying in a hospital in the US worrying about how much it is going to cost how will I concentrate on getting better.  No, I had made up my mind before I even received Dr. Heffez's email.  Toronto it is.

What else to report on?  The weeks just fly by lately.  I'm not really busy, but busy resting as much as possible.  I had a fairly good week, not a lot of headache pain.  I had my massage on Wednesday and my RMT found my tight muscles and tendons as always.  I went to yoga on Friday.  I didn't feel quite as relaxed after class as I did the first week, but we were doing some different movements.  I spent a good part of Saturday with my sister-in-law Jen at the mall doing our best to put a dent in the gift cards I received at Christmas.  Another 2 new sweaters, a long sleeved-t, 2 camis and a pair of yoga pants.  And I still have more shopping to do!  I'm going to be the best dressed person at work! Or at least one of them!  I love to look professional and having received gift cards for that purpose the last 2 Christmas' has really expanded my wardrobe.  A few little items, like a good white dress shirt, and I've got everything I need.

It rained today.  Yes, in Thunder Bay, in January, it was +3C and raining.  Which turned to freezing rain, then sleet / slush, and finally snow.  Very bizarre weather for January.  Tomorrow's drive will prove to be interesting.  Thank goodness I only have 5 km to travel.

Oh!! I nearly forgot!! I'm truly a blessed person.  My male boss came back to town on Monday for some Discoveries etc.  And he brought me a gift.  His wife made me a quilt!!! Just for me!! And it has frogs on it!
He asked my sister-in-law Rose what I liked, and she of course told him frogs.

So he had his wife make me the most beautiful quilt, he says, to help me stay warm while I'm recovering.  I was beyond touched.  I had to bite my cheek so I wouldn't cry.  For someone who has the reputation as being such a tough guy to work for, such a bear of a personality, I sure found the teddy bear within.  I would never in a million years expected something so beautiful, so thoughtful, so heartfelt from him.  I am blessed and humbled by his compassion.  I had a beautiful thank you card tucked away so I sent that off to his wife in Arizona to thank her, and him again too, for their support through all of this.  There aren't nearly enough people in the world like them.

Here's a close up of the froggies:

It really is a beautiful quilt!!  I've been telling everyone about it.  And the other night when I slept in the spare room (Thomas had a cold and kept sneezing in his sleep!) I put it on the bed extra to keep me warm.  I love it.  And I might just bring it with me to TO when I go for surgery.  Something to remind me of how lucky I really am.  I have such a wonderful family, great friends and fantastic bosses and colleagues.  Plus two whole other online families on the forums I belong to who are always there with prayers and support whenever I  need it.  One of the posters on one forum shared this poem with the group when I put out a plea for hugs last week.   It says it all.

B. Y. Williams

When trouble comes your soul to try
You love the friend who just “stands by”.
Perhaps there’s nothing that he can do -
The thing is strictly up to you;
For there are troubles all your own,
And paths the soul must tread alone;
Times when love cannot smooth the road
Nor friendship lift the heavy load,
But just to know you have a friend
Who will “stand by” until the end,
Whose sympathy through all endures,
Whose warm handclasp is always yours -
It helps, someway, to pull you through,
Although there’s nothing that he can do.
And so with fervent heart you cry’
“God bless the friend who just ‘stands by’!”

Sunday, January 17, 2010


It's been a tough week, again.  Headaches on the scale of  9/10 on Wednesday and Thursday.  A trip to emergency with at CT scan and I'm being scheduled for an outpatient MRI too.  It's been rough.

Too much stress or exercise or a combination of the two triggered a major headache after feeling good for a whole day.  Sheesh.  I had a stressful day a work on Wednesday and knew it - I could feel it in my shoulders.  I went for a long walk that evening - it was beautiful -4C in January is rare!  And once I got home I just felt the pain settle in over my head and shoulders and start to pound.  I took a Maxalt before wrapping my head in ice and going to bed.  But I was up 4 times during the night getting ice and taking more Maxalt at 6am.... nothing helped.

Thursday morning I had no pain.  But I was really dizzy and lightheaded.  I felt I could drop at any time.  I was at work, sitting down to photocopy and I knew I couldn't take it or continue.  I called hubby to take me to emerg.  I was in quickly and the nurse and resident I saw actually had a basic knowledge of Chiari.  The resident wanted to consult with a NS for his opinion.  And he actually returned her call!!  He wanted a CT and MRI done to check for hydrocephalus and to see if my CSF was being blocked.  I was able to have the CT right then but our MRI is so busy that I'm on a short waiting list.  I should have it within the week.  While I was there the pain started again, getting worse and worse.  They offered me Maxeran - which I'm now told I have adverse reactions to (anger and agression) so that was a no-go.  They offered gravol, but I wasn't nauseated so I didn't see the point of an IV for gravol.  So I got ice.  That's it.  The CT showed no hydro, so the resident said I could go home.  If I don't hear from the MRI department by Thursday I'm to call there.  The nurse at emerg did call on Friday asking a few questions before my MRI requisition could go over so at least I know that it is on it's way.

I stayed home from work on Friday.  I felt a little better, not dizzy at least.  Just pressure, lots of pressure in my head.  Especially when I went from sitting to standing or lying to sitting.  Lots of ice, rest and hydration.  I also drafted my letter to Dr. Gentili to ask him to book the decompression surgery.  I'm hoping for sometime in April.  I cannot continue life in this pattern.  The month of January I have only had 2 good days - today is the 17th.  That means I've had 15 poor to really bad days.  And my headaches are not going away with the Maxalt.  When it takes over a week to feel better something just isn't right.  I want to get better.  I need to get better.  I can't forsee the next 50 years of my expected lifespan spent on the couch with ice packs, or holed up in my bed in the dark trying to breath through the pain.  I've made up my mind I deserve much more.  I don't want to miss out on life for the rest of my life.  So, hopefully, surgery will improve my quality of life.  It has not been an easy decision at all.  Lots of research, contemplation, conversations with family, and more research. 

Brain surgery is not to be taken lightly, and I'm not taking it lightly.  I look forward to being a Chiari surgery survivor - 2010.

Thursday, January 7, 2010

The Chiarian's Creed

I promise to accept the fact that I have Chiari Malformation, a neurological disorder which will limit my abilities in my everyday life.

While I will always have Chiari, some days will be good and some days will be bad. I will be thankful for the good days and try to make the most of them.

When I am having a bad day, I will try to remember that most likely it will not last.

When I am having a bad day, I will listen to my body, and get the rest that I need. I will let my family know that I am not feeling well, because they cannot read my mind.

I will not feel guilty about resting, because I will eventually begin to feel better, and in the long run, it will also benefit my family. They will not become malnourished if they eat peanut butter and jelly sandwiches for dinner.

I will not feel guilty or worry about the work that is not getting done while I am resting. The world will not all apart without me, even though it looks like it already has.

I will not let anyone else make me feel guilty for taking time out for myself. They will never understand exactly what I am experiencing, the pain that I feel, the exhaustion that I feel. They will never understand the fear that I feel when my symptoms creep up on me, and land me flat on my back.

I promise not to feel sorry for myself when I am feeling bad, because there are a lot of people out there who are in worse shape than I am. I will not be sorry for what I don’t have, but be thankful for what I do have.

I promise to learn a lesson from my illness, which is not to take life for granted. I will enjoy every moment that was given to me, and be thankful for the times that I can smile and laugh.

I will try to help others who also suffer from my condition. There are many confused and frightened people who need to hear comforting words from someone who has been there. There are many people who need me to take his or her hand and be pointed in the right direction.

Lastly, I will not ask, “Why me?” While Chiari has weakened my physical body, it has strengthened my heart,
my soul, and my spirit.

Written by: Sheila Reilly

Wednesday, January 6, 2010


It was to be expected, but I'm still disappointed that OHIP denied my application to travel to Wisconsin Chiari Institute for an assessment and possibly treatment. 

I wasn't mad at the denial.  I was mad at the Ministry of Health personnel who can't type.  The letter was sent out December 22nd.  I got it on January 5th.  Why?  Because people at the Ministry can't type.  My address was wrong so the envelope sat in the Purolator terminal waiting to be redirected from December 24th to January 4th.  I know there were holidays in the middle, but that is ridiculous.  Not to mention the fact that should I wanted to appeal their decision, the 15 day time limit had passed!  I have no desire to appeal the decision.  According to the Ministry I'm at no risk of tissue death or death itself, and as I have no notes from doctors saying anything to support my case, I do not believe that spending money on a lawyer to represent me at a hearing before the board would be prudent.  Better to save my money for a rainy day.

Besides the denial letter dampening my mood, the 5 day killer headache also kept me pretty low key through the New Year and the start of this week.  Yesterday peaked at a 8/10 through most of the work day... I got to the point where I wanted to go home but I couldn't see straight to drive, so I stayed at work.  My headache eased off a bit at lunch and I made it through the rest of the day.

My 5 days of pain were my own fault.  I felt pretty good on Saturday so I did too much - I am responsible for my own undoing.  Housework and undecorating the tree without taking those newly necessary little breaks...  Dumb. Dumb.  Dumb.

Mum, Eugene and I did go see the Olympic torch go through town on Sunday night.  They were handing out flags, so I stuck my arm out.  The flag person passed me by, but the next thing I knew there was a little Coke bottle in my hand!! It's a torch relay exclusive bottle.  It made my night!!

Even knowing that I'm not covered to go to WCI, I still sent off my MRI to Dr. Heffez for his opinion of my MRI.  I also asked him for the cost of the assessment there.  If it is affordable enough I might consider going, just to have all of the tests done that I should.  I did also ask what other tests should be done, and maybe I could have them done here instead.

So, I have a decision to make I guess.  The more I consider my options the more difficult I find my decision.  If I do chose Dr. Gentili, am I in the best care?  I know there are amazing neurosurgeons at Toronto Western.  I'm just scared.  What happens if they open up my head and find more than they were expecting?  What if it is worse and they can't do anything?  Do they just stitch me back up and send me on my merry way to try and find someone who can help?  Or do they "try their best" and leave me worse off than I already am?

I know in my heart I want and need the surgery done as I cannot continue to live with ice packs wrapped around my head 4 or 5 times a day.  I cannot continue to miss work and activities and having to limit what I would normally do.  I'm not ready to give in that easily.

Time to think....