I'm still here

It's been a whirlwind of activity lately...  Being a puppy owner, trying to get back to work full-time, summer prolonged April weather, and everything in between...

Saw the neurosurgeon on June 6th in Toronto. My one year zipperversary was yesterday.  I'm good!!  In terms of the Chiari, Dr. G is very happy with the surgery and my recovery, as am I.  I don't need to see him again unless I start having an increase in symptoms.  We're going to keep an eye on things every 18 months with an MRI.  This will also monitor the arachnoid cyst I have in my brain.  I have to return to the ENT who initially diagnosed me with Chiari to have my tinnitus checked again as it hasn't cleared up with the decompression surgery.  In terms of the brachial neuritis, I've got another 6 to 12 months recovery ahead of me, as I do with a full decompression recovery.

I got the full report from the neurologist I saw who confirmed the brachial neuritis.  She doesn't recommend I work full time yet, and my family doctor agrees.  Hurray!!  As the current return to work plan is going to be the death of me! I'm supposed to increase to full time by July 4th.  But I'm exhausted after 5 hours.  Like, go home, need a nap exhausted.  Plus the increase in hours has increased my pain, fatigue and my shoulder blades are winging again...  All signs that the increase of hours is too much at this juncture in time / recovery.

We're still awaiting the arrival of spring and summer.  The weather has only been nice 2 days in a row.  It'll be nice, sunny and warm 24C.  Then it will be cold and raining 12C for 3 or 4 days in a row... very depressing and gloomy.  Makes me cold, miserable and sore.  My gardens are barely growing.  There are only a few blooms on my tomatoes and I am just seeing hints of basil and green onions I planted over 3 weeks ago... Very depressing. We need some heat and dry weather for a few days... or nothing is going to grow!  Which means buying and not picking my own :(   And I down-scaled the gardening this year for 1. my arm's sake and 2. space and 3. a puppy who tries to eat everything!!

And puppy... loving the puppy... Sophie is wonderful.  We are loving every minute of puppyhood.  Including the occasional late night trips outside to pee, the incessant biting as she is teething 4 teeth right now, the defiance when we're trying to train her.  Everything.  She is the only dog I have ever been acquainted with who does not want to go for a walk.  Especially in the morning.  Forget it, not gonna happen.  Treats, pulling, bribing.  Nothing works.  So we don't go for a walk in the morning.  If she's receptive I take her out back and throw a stick or ball.  Or we do training.  Most morning she just wants to sleep or cuddle.  Tonight we will graduate from puppy school.  It's been a great class.  We're learning lots and in fact were instinctively doing some of the things they are teaching us.  (helps that I read everything I could get out of the library on training a puppy beforehand!)  She is also afraid of water.  In the tub.  In the yard.  At the beach.  In kiddie pools at the leash-a-thon... If it's wet and not in her bowl, she wants NOTHING to do with it.  Very unusual for a Weim.  

I'm helping dad fix the back door, honest!!

Water!! Ack!! Nobody told me there was water at the beach!

I'm being swallowed by a boa constrictor... or am I swallowing him?

She snuggled up to me for a nap so I closed my eyes too!

Sophie is a huge attraction wherever we go as Weims are not a popular breed, but they are a very beautiful breed.  She won the youngest pet award at the leash-a-thon and came home with at least 10 bags of treats.  Everyone at puppy school wants to say hi to her.  And wherever we go - walks, the pet store, even just to the corner store - people stop to meet her and ask what breed she is.  We're very proud parents.  She is quick to learn, even if she doesn't always listen or obey.  She sits, lies down, comes, fetches usually without fail.  We're working on no pull walking, going to mat and staying.  She is the love of my life, after hubby of course.  And I wouldn't trade her for the world.

A Few Minutes to Myself

I have a few extra minutes to myself today :)  Hubby has a dentist appointment right after work, which gives me an extra hour before I would usually start making dinner. What to do?  Sit down and blog of course!

I have to admit, I want to keep up with my blogging, but my spare time is spent doing a variety of other things lately.  Reading puppy books, finally finishing a cross stitch project I started almost 5 years ago (pics will follow once it's framed), physio, yoga, visiting a friend who has just had major surgery again :( and the list goes on.

I'd like to pick up ideas I've seen on other blogs, like Junebug who is tackling the A to Z Blogging Challenge, or even Marla's Ten on Tuesday, but I can't commit.  There are days when once I'm home and away from the office computer I don't even grab the laptop except to input stuff into our food diaries.  And that I can do from my iPod.  

It's not that I don't love all 3 of my loyal readers, I just don't think I'm that entertaining and engaging that people want to read all about my little corner of the frozen world on a daily basis, especially now that I have gone private.  (And I mean it, my world is  frozen, again.  Snowed all weekend... But it's starting to melt.)  And once we get puppy, in just under 3 weeks, I'm sure I'll be on the computer even less.  We'll be walking twice a day, plus puppy school, training and playing.  I will apologize in advance if my future posts are 1. all about puppy and 2.  fewer and further between.  It's just a fact of life.  Now that I'm feeling better, I don't want to dwell on my surgery and my Chiari and my nerve issues but move forward.  I don't try to stay in the past and rehash everything.  I keep moving forward, just as my favourite quote from Walt Disney says.  Especially because I have had such success with the decompression surgery.

I'll be here, now and again, but I can't promise the frequency.  And thank-you, my loyal readers, for hanging in this long!!

The Twelve Days of Chiari

(Okay, I'm not a poet... but here goes... to the tune of the 12 Days of Christmas...  And no, it doesn't have quite the significance the song has but here goes...)

On the first trip to the neurosurgeon my doctor gave to me the diagnosis of Chiari.

On the second trip to the neurosurgeon my doctor gave to me two cognitive tests, and the diagnosis of Chiari.

On the third trip to the neurosurgeon my doctor gave to me three MRIs, two cognitive tests and the diagnosis of Chiari.

On the fourth trip to the neurosurgeon my doctor gave to me four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On the fifth trip to the neurosurgeon my doctor gave to me five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On the sixth trip to the neurosurgeon my doctor gave to me six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On the seventh trip to the neurosurgeon my doctor gave to me seven times four surgical staples, six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On the eighth trip to the neurosurgeon my doctor gave to me pictures of my eight millimeter herniation, seven times four surgical staples, six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On my ninth trip to the neurosurgeon my doctor gave to me nine new prescriptions, pictures of my eight millimeter herniation, seven times four surgical staples, six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On my tenth trip to the neurosurgeon my doctor gave to me ten numb digits, nine

On the eleventh trip to my neurosurgeon my doctor gave to me eleven centimeter incision, ten numb digits, nine new prescriptions, pictures of my eight millimeter herniation, seven times four surgical staples, six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On the twelfth trip to my neurosurgeon my doctor gave to me twelve weeks on sick leave, eleven centimeter incision, ten numb digits, nine new prescriptions, pictures of my eight millimeter herniation, seven times four surgical staples, six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

Post-Op Report

Monday was a long day.  It was also extremely hot.  Mum and I flew to Toronto for my follow-up with Dr. Gentili.  The basic gist of the appointment...

Posterior fossa decompression surgery looks like it was successful.  Dr. Gentili is very pleased with my recovery and progress thus far.  

My scars look good - the head is great, the thigh is not as good, a little hypertrophic - it's red and wider than it should be.  I can get some serum to reduce the look of the scar if I want to. But as I see it, it is a battle scar, not a beauty mark.

I can start driving in about two weeks.  But no driving in Toronto - hahaha!!  And just for short periods of time to start.  No 3 hour trips for a while.

Dr. G (I'm tired of typing his whole name, sorry folks, you get who I'm talking about) isn't confident that the numbness in my left leg is Chiari related (I disagree with this, but he is the doctor) and said if it persists that I should bring it up with my family doctor.  I also have some disc issues in my back which might be why I have the numbness.

I was told to see my eye doctor to make sure I don't have any retinal issues as I've been seeing more spots and halos than normal and Dr. G wants this monitored but doesn't think it is from the surgery.

I will have an MRI done here and send the results to Dr. G.  He will use the MRI as a base line to monitor my herniation and the arachnoid cyst in my right temple.  If the MRI looks good I don't need to see him until June next year.  If he sees something amiss he will let me know and I will see him in December or January.

After checking the clinical notes for the length of my herniation (sorry, didn't record it, but the tonsils were into the first vertebra) and if he took a picture during surgery of my brainstem (sorry, guess I didn't this time) he also looked for anything about my shoulder (nope, sorry, don't see anything and the positioning during the brain portion of the surgery should not cause my shoulder distress).  For the brain surgery I am laid on my face (obviously) with my arm externally rotated at my sides, not splayed out in a T.  But he does not know what happened when they moved me or rolled me over like Raggedy Ann.  He is sorry about my shoulder issues and did concur that the orthopaedic I found at Toronto Western is an excellent shoulder specialist and recommended I be referred to him by my family dr. as well.

Dr. G left the return to work discussion up to me and my family dr.

Mum and I walked approximately 7 miles in the 40C / 104F temperatures.  We walked through the Eaton's Centre, China Town, to the hospital, back through Kensington Market and back to the shuttle to the airport.  We were hot and exhausted, but it was a good day.  We had a few good laughs and a really nice early supper at Red Lobster.  And thank goodness for air conditioned airports and free cold drinks. And our flight was only about a half hour late getting in, so in all it was only a 18 hour day.

Today was the trip to my family doctor to discuss the shoulder and the return to work plan.

Family doctor (from hereon in fam dr.) did the referral to the second orthopaedic surgeon - the one at Toronto Western.

Fam dr. also did my referral for my brain MRI at Dr. G's request, sooner than later.  Hopefully it will be in the next couple of weeks instead of the traditional 6 to 12 week wait we usually have here for MRIs.

Return to work - hahahahahahaha - not possible with my shoulder right now.  My shoulder is getting worse by the day and the activities I can do with it are less and less.  I cannot hold a bath towel with my arm outstretched to fold it.  I cannot pour the kettle without supporting my arm with my left hand.  It's killing me to type my post, but I can't stand typing left-handed only... And the pain gets worse as the day goes on to the point that by 3:00 or 4:00 I'm usually very uncomfortable and bordering on wanting to go to the emergency room.  (but what's the point, they can't do anything for it anyway)  It burns in my shoulder, radiates down to my fingers, down my clavicle into my chest, up my neck into my jaw and ears, and down my spine.  OUCH!!!! And no pain killers work.  Where was I?? Oh yeah, even without the shoulder issue my fam dr. would like me to have 4 more weeks off of work.  But because of the shoulder 6 to 8 weeks more off work, minimum.  We will revisit the return to work sometime early October.

Fam dr. would like me to have the MRI results before I return to work.  And if it's in the stars, the cards, the heavens, and any other thing that could work in my favour, also to see an orthopaedic before I return to work.  So I'm on extended "vacation".

After my appointment I stopped in at my office to let my two bosses know what was up and talk to the HR department about the end of my short term disability coverage and the start of my long term.  Good news there, there should not be a lapse between the two plans and when we get close to the end of October I just have to pay my fam dr. to fill in more paperwork to confirm my symptoms and that I cannot yet perform my duties at work.  (I have not mentioned how much I dislike having to pay $30 for my fam dr. to write on a form for my insurance company telling them I cannot yet return to work.  But them's the breaks right??)  Both my bosses were in meetings, so I had to hang around for a while.  I chatted with a couple of colleagues and then brought my bosses up to date.  Both are sad that I cannot come back right now, but neither want me to rush back either.  My male boss noticed that I'm still having trouble with the cognitive thinking and transferring it to speech, but he was nice about it - said he could live with it.  (not in a condescending way, typing it out sounds condescending...)  It doesn't happen all the time but only when I'm trying to think quickly - like responding to a question.  My female boss misses me and really wishes me nothing but the best (she is possibly the nicest person I've ever met).  She too said once I am back she will accept any difficulties I might have returning to my duties and we will work with them so I can be the assistant I was before my surgery.

So, 6 to 8 more weeks off, at home, continuing to heal my head and hopefully hear from an orthopaedic!!

101 Things, Part Two

Shall I carry on??   

74.  I don’t eat beef, pork or dairy

73.  My favorite holiday is Halloween – you can be anything you want to be!

72.  The most influential person in my life was my grandma

71.  I went to a high school that had over 800 stairs, and the best cross-country and track teams because of it.

70.  My favorite drink is juice – Minute Maid punches, followed closely by peppermint tea with honey

69.  I don’t tolerate caffeine, hence the peppermint tea in 70

68.  I have driven across half of Canada – the Western half

67.  My husband and I were set-up by a mutual friend

66.  I love to read historical fiction – Colleen McCullough, Anne Rice are two of my favorites

65.  I love things ancient – Egyptian, Roman and Greek

64.  I visited the ruins in Rome and the outside of the Coliseum but everything was closed because it was a national holiday :P

63.  I stand 5’1” tall

62.  I was born during a heat wave and kept my mum up all night

61.  I intensely dislike the take off and landing while flying

60.  My husband does most of the heavy housework.  I do the cooking

59. If I could go anywhere in the world, no budget, no conflict, no terrorism – I’d go to Egypt and tour the pyramids of Giza, Luxor and the Temples of Carnak

58.  I love music.  All kinds of music – 30s and 40s, classic rock, current pop and rock, country, classical, broadway.  I don’t like jazz, hip hop or rap

57.  There are days when I can really relate to Eeyore

56.  I married my husband exactly 8 years to the day I met him

55.  I cannot grow house plants.  I can kill a cactus. 

54.  I took piano lessons for 5 years

53.  Instead of having a day-after party for our wedding my husband and I went riding on our motorcycles

52.  I believe chocolate should be it’s own food group

51.  I learned to write left-handed in high school when I chipped my elbow bone of my right arm

50.  I’m petrified of being sick to my stomach.  I cannot discuss it, I cannot hear others talk about it, watch it on tv including on Southpark.  And no, I don’t know how to get over it

49.  I am allergic to most man-made painkillers.  Give me morphine or see me suffer the side affects of most everything else

48.  My wedding ring is size 4 ¹/₂, my pinky is under a 3. Yes, I have small hands

47.  I ran into a bird while driving 90 km (55 mph) on my motorcycle.  I did not stop to see how the sparrow was.  It hit me square in the forehead.  THANK HEAVENS for full face helmets!

46.  I have irritable bowel syndrome (IBS).  During a flare in 2006 I lost over 40 lbs in 4 months because I couldn’t digest anything I was able to eat.  Great for the waist line, bad for my immune system.  Hence 74.

45.  Re: 81 – my orthopaedic surgeon for my 2 foot surgeries always knew there was something wrong with me more than he could diagnose.  Turns out he was right – Chiari!!  I should sent him a thank you card for not giving up on me (even if he didn’t lead me to the diagnosis)

44.  I’m learning to enjoy Christmas – I used to hate the holidays

43.  My grandparents were married for 60 years.  I can only dream my husband and I live long enough to enjoy the same

42.  I love to cook, but I’m always worried that what I make isn’t good, especially if I can’t test it because of ingredients I can’t consume due to 46

41.  My favorite artist is Michelangelo

40.  I screen my phone calls and have talking call display so if I’m not in the room my phone tells me who is calling

39.  I’m a huge arachnophobic.  That and 50 could put me in the mental ward.  If a spider is near I’ll grab the vacuum.  In my logic, they can't crawl back out the hose

38.  If I had to chose a time of day, it would be morning, I function my best and usually my pain is the least at that time

37.  I wear a size 5 US, 36 UK shoe

36.  I used be afraid of the dentist to the point I would be physically ill.  Now I have a new dentist and it is much less tramatic

35.  I love Angel, Bones, CSI and CSI New York.  I’ve seen every episode of all 4 shows and have most of the DVD box sets

34.  My favorite food would have to be chocolate.  Followed closely by anything made for Christmas or Thanksgiving dinner except turnips

I'm working on the rest!! Watch for it!  (If you're not already bored to tears that is!)

Ward 5B - Neurology

The last instalment of my hospital stay.

I was transferred from NICU at some point on Wednesday, 1 day after surgery.  I don't know timelines and some of my days in the ward blend together.  Hey, good drugs will do that to you!  I know I was moved into a room and I had my first room mate - Mrs. room mate.  Who got there first?? No idea.  My pain was still pretty bad, as was my gigantic fat lip!  The pain management staff did their best and tried me on different drugs, which turned out to by hydromorphine, and thank heavens, it started to work.  I had 8 hour long lasting pills with 2 hour top-ups when I needed them.  I remember dozing in and out of a sleepy stupor a lot.  And I remember moaning... a lot of moaning.

Turn out Mrs. room mate was the moaner - not me.  At the young age of 87 she had dementia and was hard of hearing.  She was in to have a GI scope, so why is she in the neuro ward??  To drive me (and hubby and several nurses) absolutely crazy.  She would moan every 4 or 5 seconds - oooohhhh, ahhhhh, eewwww, like every breath hurt! The nurses asked if she was in pain - no.  So why are you moaning???? ARGHHHHHHHHH!!!!!!! I'm supposed to sleep in the same room as this woman! I told hubby several times to help me up so I could go smother her with a pillow!  I'm not the violent type, but her incessant moaning was intolerable. Then her family came to visit!! It was late at night, that's all I remember.  And they were louder than necessary.  They put up a sign which read "Mrs. room mate has dementia and is hard of hearing.  Speak loud and clearly"  Yeah, great room mate.  Somehow I managed the night... must have been the drugs!  In the morning the nurses came and moved Mrs. room mate across the hall.  Whether it was for my sanity or theirs who knows, but I thank them for doing so!  

I had inedible meals brought to me the first couple days.  Um, I don't eat pork, beef, any dairy, eggs or fats. And I don't care for hot cereal.  And no apple juice because of the acid.  I have major food issues... And the admitting nurse and the dietician I saw when I was admitted knew all of this!  They put me down as vegetarian, type 1.  Whatever that meant! So the first breakfast tray contained cream of wheat (ultimate yech!) and a hard boiled egg, and I believe apple juice or juice with apple in it!! This did not go over well with me.  I remember managing a baby cookie which we had brought with us.  It's bad enough my mouth looked like I went 10 rounds with Mohammed Ali, but to add insult to injury, the dietician send me nothing I could eat!

I got a new neighbour Thursday at some point.  A wonderful Chiari sister I later learned!  She had just had a shunt revision.  Good, two neuro patients in the same room.  Much better.  Plus, she is 30, not hard of hearing and she doesn't moan!!  We struck up a conversation between the curtains when she made comment to her mom of how lovely she looked in a hospital gown and green surgery hat.  I told her all she needed was the compression stockings (which I'd been wearing since NICU) and she was ready for the ball!  No stockings for her was her reply as she is paralyzed due to spina bifida.  Our little chat started a new friendship.  It was soooo nice to meet someone who understands Chiari!! She had decompression surgery in December.  We chatted off and on for the next 3 days.  Good room mate is the sweetest thing, and her family is wonderful.  Every time the went to get something for Good room mate they made the same offer of me - unfortunately, it was milk shakes, so no.

The things I remember most about my 4 days in the neuro ward:  bad food for the most part.  One nurse did some finagling and got my menu changed.  So I did get one meal with chicken that was partly edible.  It was really hard to eat with the big lip, but it was better than the vegetable goulash, vegetarian chili, cream of wheat, dry bread (not toast, just dried bread!), and other assorted oddities they sent me to eat.  And one night they sent me salmon and plain rotini noodles.  So I managed a few mouthfuls.  But wow, I can't believe how bad the food was.  Really, truly.  For such a wonderful hospital, the dietary crew needs some help!

I was impressed by the care in the ward.  Each patient has a RPN, not just a nurse between 9 and 5 with at 6:1 patient to RPN ratio.  We also had a ward nurse - 2 or 3 shifts a day. My first nurse, Rose Marie, was wonderful, truly wonderful. And a PC - personal care worker who was responsible for helping us bathe and clean up daily.  (Well, the day I could actually have a shower and wanted a shower, my PC didn't come back as promised!! So no shower for me!)  Plus the assorted dietary, pain management staff, some physiotherapists and occupational therapists, and doctors, fellows and associates.  It was a busy place!! But the care is second to none.  I am so pleased with the care I received.  There were also volunteers who brought fresh ice and water twice a day, magazines and newspapers.  It really is well run.

Dr. Gentili came in to see me three times during my stay.  I was pleased and impressed.  He said he doesn't always make his rounds, that his team does.  Well I saw him and his team!  The team was great!  Beverly, George, Dr. Andre, everyone.  Beverly sang "My Favourite Things" with me while George removed the drain from my leg incision.  How many doctors do you know that will sign with you so you take your mind off of the procedure?  Dr. Gentili talked to hubby a few times too.  He was very happy with the surgery and with my progress in the hospital, except that I didn't walk down the hall fast enough. Hey, compression stockings, swollen feet and a 6 inch incision in my leg!  Hello??  But he did tell hubby my herniation was not the least and not the worst he has see.  I don't have the exact length, but I will ask him in August.  He said that the immediate reduction of the pressure in my head, less problems speaking and thinking are all good signs.  My legs don't go numb all the time now either.  My tinnitus is still in my left ear, but it's only been 11 days and there is a lot of swelling still.

I battled nausea for the first few days, but by Saturday I was well enough to be discharged.  I was supposed to go on Friday, but a bout of nausea put a kibosh on it.  I got dressed for the first time!! Hurray!! And we picked up my discharge documents and staple remover from the nursing station and off we went!  We stopped on the main floor to pick up my prescriptions and ran into my friendly room mate's dad.  I'm telling you, this family is the salt of the earth - they truly are wonderful.  I really was sad to say good-bye to good room mate.  But back to where I was... running into the dad... he was so sweet!! He drove hubby and I to my cousin's condo where we stayed from Saturday afternoon until Monday at noon when we left the city for home.

The trip to the airport was an adventure, the taxi driver rushing us around downtown to the airport the day after the G20 summit.  Hubby had to put his arm behind me for support, but we made it uneventfully.  I managed to walk from the taxi to the ferry and all the way to check-in at the airport.  Then a security guard brought me a wheelchair and we wheeled through security.  I was, of course, wearing my cute scarf and Brain Surgery Survivor t-shirt.  We were asked by 3 of the security staff about my surgery and they were all amazed I was up, able to walk and flying home only 5 days after surgery! And it's true, it is pretty amazing, but I'm so happy I'm feeling this good!  There was some turbulence on the flight, but other than that I was good.  I'm not a great flyer - don't like take off or landing at all.  I was greeted at Thunder Bay with a wheelchair to make it through the terminal and welcomed home with a big hug from my teary-eyed mum.

It is so good to be home!!!  Follow-up trip to see Dr. Gentili is on August 30th, and this time my mum is going with me.

99 Little Things

Once again, I have hijacked a great post from Marla.... Thanks!


99 Things About Me (Everything that I have accomplished is in bold)

1. Started your own blog
2. Slept under the stars - I've slept in tents with holes in them? Does it count?
3. Played in a band - grade 8 band! I played the baritone tuba... and yes, it outweighed me!
4. Visited Hawaii
5. Watched a meteor shower
6. Given more than you can afford to charity
7. Been to DisneyWorld - yes 3 times, including my honeymoon!
8. Climbed a mountain - technically I rode up on a chairlift, but I skied down it! :P
9. Held a praying mantis
10. Sang a solo
11. Bungee jumped
12. Visited Paris
13. Watched a lightning storm - Plenty of good ones over Lake Superior...
14. Taught yourself an art from scratch - several
15. Adopted a child
16. Had food poisoning - unfortunately
17. Walked to the top of the Statue of Liberty
18. Grown your own vegetables - plenty of them!  The lettuce, basil and onions are already up!
19. Seen the Mona Lisa in France
20. Slept on an overnight train - not overnight, but a really loooooooong day or two traveling through Italy
21. Had a pillow fight
22. Hitch-hiked 
23. Taken a sick day when you’re not ill - one I know of
24. Built a snow fort
25. Held a lamb
26. Gone skinny dipping - Finn + sauna + the river = skinny dipping!
27. Run a Marathon
28. Ridden in a gondola in Venice - Never got that far north in Italy :(
29. Seen a total eclipse
30. Watched a sunrise or sunset - plenty of them too!
31. Hit a home run - barely made it to first base - not a big baseball player
32. Been on a cruise - I don't think a weekend on a houseboat counts, so no
33. Seen Niagara Falls in person - yep, in grade 8 and with my bestest friend last July!
34. Visited the birthplace of your ancestors - yep - even saw the house my dad was born in
35. Seen an Amish community
36. Taught yourself a new language - not completely myself, but Italian and Finn, plus French in school through to my university degree, ugh, and Latin - a prerequisite for the French degree
37. Had enough money to be truly satisfied - I'm just about there....
38. Seen the Leaning Tower of Pisa in person - 1993!
39. Gone rock climbing - I was supposed to learn last summer, then I got diagnosed with Chiari and it might be a little to dangerous if I should fall, even though I'd be tethered etc.
40. Seen Michelangelo’s David - yep 1993
41. Sung karaoke - my favourite memory of my friend Martin - karaoke at the Christmas party.... I Will Survive!
42. Seen Old Faithful geyser erupt
43. Bought a stranger a meal at a restaurant
44. Visited Africa
45. Walked on a beach by moonlight
46. Been transported in an ambulance - in the passenger seat - not the patient
47. Had your portrait painted
48. Gone deep sea fishing
50. Been to the top of the Eiffel Tower in Paris
51. Gone scuba diving or snorkeling - snorkeling at camp
52. Kissed in the rain
53. Played in the mud
54. Gone to a drive-in theater
55. Been in a movie - nope, just on local tv
56. Visited the Great Wall of China
57. Started a business - Cassandra's Crafts!
58. Taken a martial arts class
59. Visited Russia
60. Served at a soup kitchen
61. Sold Girl Scout Cookies - nope
62. Gone whale watching
63. Got flowers for no reason - a few times
64. Donated blood, platelets or plasma
65. Gone sky diving - why would anyone jump out of a perfectly good airplane !
66. Visited a Nazi Concentration Camp
67. Bounced a check
68. Flown in a helicopter
69. Saved a favorite childhood toy
70. Visited the Lincoln Memorial
71. Eaten Caviar - oh sooooo yummy..... drool.....
72. Pieced a quilt - no but I crocheted a couple blankets
73. Stood in Times Square
74. Toured the Everglades
75. Been fired from a job - yep but the other bosses called me back the next day...
76. Seen the Changing of the Guards in London
77. Broken a bone - my toes, bones in my foot, my thumb bone, and a pinky finger
78. Been a passenger on a motorcycle - heck I DRIVE the motorcycle!
79. Seen the Grand Canyon in person
80. Published a book - in a book, but not the whole thing
81. Visited the Vatican - yes May 1, 1993 - and the Sistine Chapel was CLOSED! Grrrrrr.....
82. Bought a brand new car - well, a new truck
83. Walked in Jerusalem
84. Had your picture in the newspaper - when I was 4 or 5!
85. Kissed a stranger at midnight on New Year’s Eve - no one stranger than my husband :P
86. Visited the White House
87. Killed and prepared an animal for eating - fish is an animal?
88. Had chickenpox - yep and shingles
89. Saved someone’s life - no, but help a few injured skiers as a Ski Patrol
90. Sat on a jury - thank heavens no, I work for a deputy judge - I'm exempt :)
91. Met someone famous 
92. Joined a book club
93. Got a tattoo
94. Had a baby 
95. Seen the Alamo in person
96. Swam in the Great Salt Lake
97. Been involved in a law suit  - no thank heavens again!
98. Owned a cell phone 
99. Been stung by a bee - yes, and a wasp, and a hornet and a few other miserable biting things!

And I think I'll add one:

100.  Had brain surgery - will - very soon!!!

Nice to have a little distraction this evening.  My brain's working overtime....

Bucket List

Just finished watching The Bucket List for the umpteenth time.  I love this movie.  When my father-in-law got diagnosed with cancer last spring we asked him if there was anything he wanted to do for his bucket list.  He wanted to see another NHL game live.  And spend time at camp.  Within a couple weeks he was so ill that he never again left the house until the day he was transferred to the hospice care unit.  He never got to do the things he wanted to do.  I miss him every day.  Especially on days that end in Y.

It's been just over 7 months since dad died.  And almost 8 months since I was diagnosed with Chiari.  Dad really didn't get to know about my diagnosis as he was very very ill by then.  But I talk to him often about it.  I know or I believe he is somewhere watching over me, Thomas, my mother-in-law and the rest of our family. I keep telling him he has to watch over me when it comes time for my surgery (and no, I still do not have a date).  I believe that everything will go smoothly with my surgery and recovery, but I still like the idea having dad as my guardian angel.  (for those of you not close to me, my father-in-law is Dad to me.  I've had no contact with my biological father since my wedding day.)

I'm not a religious person.  I don't frequent church sermons.  I was never baptized.  I have gone to a number of different church denominations.  I enjoyed the service at the United church I went to as a child, but when the pastor passed away, it all changed and I didn't like the new pastor as much.  I've been to Catholic - numerous Catholic churches, Lutheran - in English and Finnish services, Episcopalian, and a few other houses of worship.  I've even attended a Hindu funeral - very nice, very peaceful service.  I have never found a church or Christian branch of religion that I felt 100% comfortable with.  I question everything.  And some of the differences in the different churches offers perspective on the whole religious experience.  Sorry to my devote religious followers, no offense intended, no offense taken, but I'm a non-conformist.

Where was I going with this post?  I remember.  Bucket List.  There are 101 or more things that I would love to do before I die. Here is a smattering...

1.   Visit the pyramids of Egypt

2.   Take my husband to Italy

3.   Learn to race motorcycles (but now because of Chiari, I will not risk it)

4.   Learn to speak Finnish better

5.  Meet Petra in person and of course Heidi - again!!

There are other things, non-monetary desires - 

6.   Be loved by my family, which I know I already am

7.   Find my centre at yoga

8.   Be more spiritual

Is there 1 thing I would like to do more than an other?  No, the ranking was just the way I wrote them down.  For now I am focusing on me.  Maintaining my pain until my surgery, maintaining my sanity too.  Using yoga and meditation to get through, hopefully without drugs as much as possible.  Once I've had the surgery, I will begin to re-evaluate again.  And re-write my bucket list.

Healing and Celebrating

It has been a week to heal and a week to celebrate.  I actually had a fairly good week. My head wasn't too bad, but I was still extremely tired.  And I had a number of appointments and errands and things which had me out of the house most of the week after work.

I went for tea with an old friend from high school who I've reconnected with in the last two years.  She is getting married in June and having her shag in March.  (for my foreign readers our "shag" is also known as a doe and buck or a dick and jane party, basically a social to make money for the couple's wedding).  I really hope that I'm up to going because I think it will be more fun than my high school reunion was. I will know a lot of people.  My friend and I had a wonderful visit.  She too is healing.  After being involved in a horrific car crash 2 years ago, in which she lost both her mom and her best friend, she has undergone several surgeries to repair damage to her shattered wrists.  She too is healing.  It was wonderful to talk to someone else who understands pain and managing it and the healing process and how long it can take.  I'm very fortunate to know her and I'm very happy we have been able to reconnect.

Friday at yoga I was the only participant so Mayama did a very special class with me.  She is fully aware of my restrictions because of the Chiari.  I was in a good deal of pain that afternoon so we worked on breathing and grounding techniques to try and reduce my pain and even make it disappear or explode.  We did a few poses, all very gentle.  We talked a lot about healing and positive energy.  She even did some therapeutic touch - wow. I left the class feeling very centered and relaxed.  Mayama even gave me a gift - an imagery cd.  I haven't had a chance to listen yet, but I'm looking forward to it.  I've written down most of the stuff in the back of my journal so I can use it now and after surgery.

This week also saw my grandparents celebrate their 60th wedding anniversary.  Theirs is a love and a marriage to admire.  60 years of good times and bad, sickness and health, richer and poorer.  And my grandparents have been literally through all of that.  I am blessed to be a part of their lives and blessed to see a marriage such as theirs.  My grandmother is more than just grandma, she is a very very good friend to me.  I often confide in her. We have a wonderful relationship.  They didn't want a big party or even a dinner out.  The family and two close friends got together at my brother's house last night for appetizers and cake.  It was very relaxed and very nice.  Again, my congratulations to them on their 60th anniversary.  If I make it that far I'll be 90!

I will finally get the results of my 1st MRI - brain - on Thursday. Once I have that I will forward it to Dr. Gentili. We did have an email back and forth this week.  I wanted to update him on my most recent hospital visit and find out where I was on the waiting list for April.  Dr. Gentili said I'm still on the list but doesn't have a date yet.  I'm keeping my fingers crossed that the MRIs show nothing more than we already know, but given my more and more advanced symptoms lately it is hard to say.

Reflections

I've been doing a lot of reflecting this weekend. I can't do much else. My Chiari had me in the hospital again yesterday so today is a rest, rest, and only rest day. And about 4 naps in the middle.  Thomas had to take me to emergency when he came home from the memorial pool tournament in honour of his dad yesterday night.  It was so bad I was curled in a ball on the floor bawling - I just hoped the dr. at emergency would give me something to help the pain.  Fortunately, the Torodol he tried worked.  Thank heavens for small favours.  I'm literally exhausted today, but at least I'm not in any pain.

I'm reflecting on how lucky I truly am. I got the most wonderful valentine's card from my dear husband - and it had the most beautiful message. It brought me to tears knowing how lucky I am to be his wife. Without him I couldn't make it through days like yesterday. Even though he hates taking me to the hospital he does. And he stays until the dr. sees me. He's very often my advocate because so many times I can't physically express what is going on because the pain is so bad. Yesterday was the worst yet - 8.5 / 10. At 9 I begin to lose consciousness - just to give you an idea.... Where was I... sorry I ramble on.

I'm reflecting on how lucky I am. My DH was called into work this afternoon. So I finally sat down and watched My Sister's Keeper. I cried a dozen times or more. But it reminded me of how lucky I am. I'm sick, but not that sick. I have my husband and family to support me. I don't take anything from my family but they all give willingly of the love, time and compassion. I will have my surgery in April or May and I will recover and I will get my quality of life back. It was a great movie to make me realize just how much I have to be truly thankful for.

Sometimes I believe it is important to realize how ill you are, but how well you are in perspective. We all battle daily with our own issues. But when you reflect on it I hope you realize, as I do, how fortunate we truly are.

On a side note, I did have a wonderful stretch of ten days or so before yesterday without a headache!! We went to Minneapolis last weekend, hung out with Kyle, went to the motorcycle show with Kyle, Mikey and Rosa.  We had such a good time.  I almost forgot about the Chiari.  Pity that feeling good couldn't last for two weekends in a row.

Decided

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.

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.

Perspective

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...

Stuff

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...

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...

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!!

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.

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!!

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.