Oh for the LOVE of Shoes!

Yesterday was my EMG appointment at Toronto Western Hospital.  Hubby and I flew down in the morning, walked up to the hospital and I met with Dr. A.  The assessment and tests didn't red flag anything for Dr. A, but he will analyze the data and send a report to my GP and Dr. Gentili.  He told me a couple of interesting things.

1.  Nerves regenerate at a millimetre per day on average.  NOT a millimetre per year as I was told by someone else.  Phew!  So this could get better soon!

2.  The radial nerve is the most easily injured in the arm because it runs at the outside of the wrist, near the thumb.  It is a very common injury.  Okay - makes sense.

3.  If my GP suspects I have POTS, I have to see a specialist at Toronto General as soon as I can make arrangements.

He tested my muscle conductivity, listened to 3 muscles in my shoulder, arm and hand (using a 4cm needle injected at each point... OUCH - especially the one in my hand!!) He tested my hot / cold sense, and then the tech came and did the actual conductivity test.  Nothing like being electrocuted to start off your day!

I think the appointment went very well and my GP will receive the results in about a week.

Hubby and I left the hospital around noon and started walking towards Bloor St.  He had a store in mind to check out.  We walked through the Toronto fashion district.  Bloor St. is lined with designers stores like Hermes, Dacosta, Gucci, Chanel, Prada... you get the picture.  All the places you and I with modest incomes, mortgages and bills to pay can only dream about shopping.  Designers you see on Paris runways, and are not sold at your local Sears store.  We walked into the "mall" (they aren't really malls in this area, more like huge office complexes with shops on the main floor and offices above).  The store we were looking for appears to have closed... hmpf! A long walk for not!  But anyways... the whole reason for this post... 

I found a shoe store.  It had a 50% clearance sign, so I said to hubby I'd like to just take a peak at the rack for my size.  I have small feet 35 Euro, size 5 - 5.5 US.  So finding shoes, especially cute shoes, is often difficult.  And I have a new found love of heels.  Now that my feet don't kill me all the time, and my head seems to tolerate a half-day in heels, I'm looking to add to my collection of 2 pair!

So I found the absolutely cutest pair on the rack.  I have absolutely no idea who this "Ron White" is.  I thought the shoes were adorable and I almost asked to try them on.  Until I found the price tag that is.  This is a $589.00 pair of shoes!!! But, they were on sale for the low low price of $299.00!!!  OMG!! I have spent as much at $100 on a pair of Birkenstocks, but not more than that.  $300 for a pair of shoes is quite unreasonable!  But OMG they are so cute.  And apparently very comfortable.  But I didn't try them on.  I put the shoe back on the rack and went to find hubby.  I held up the shoe and he kinda scoffed.  Then I showed him the price.  He laughed out loud and we put the pretty $150 shoe back on it's rack and carried on our merry way.   But oh they are so cute!!

So to compare with the designer shoes, here are my two little beauties.

 

The red pair are sling-backs from Payless.  They cost $49.00  They are great with a black suit and red sweater or with jeans on casual Friday.  I love the flower.  I call them my poppy shoes. 

The brown pair are adorable and surprisingly very comfortable.  They're Le Chateau and I have no idea what they are worth.

Both pairs were gifted to my by a colleague of my mum's.  They were her daughter's shoes.  Her daughter passed away from Cystic Fibrosis this past year.  I'm kinda honoured that her mum thought of me to give the shoes, knowing I too had small feet. 

So I'm on the look-out now for another pair of cute 3" heels.  I'm no Sex in the City girl when it comes to my shoe wardrobe, but I'd like to have a pair or two more in my collection.

A Year In Review

2010 will go down in my mind as the most challenging year of my 34 years.  And I'm still shiny-side up.

The first few months of the year were riddled with pain, headaches and monthly calls to Dr. Gentili waiting for my surgery date.  I'm happy to report the pain of the first months of the year is behind me because of my June decompression surgery.

In February we celebrated my grandparents 60th wedding anniversary.  Theirs is a love from which I try to model my own marriage.  They didn't want any big celebration, just cake and coffee with the family.  I ordered letters and certificates of congratulation from Queen Elizabeth II, the Prime Minister, the Governor General, the Premier, and the Mayor of our city.  I was so proud to say I have grandparents who were married for 60 years.  It is a remarkable achievement. 

My grandma's health began to fail shortly after her 83rd birthday in April.  She was admitted to hospital and we knew it was very touch and go.  In true grandma fashion, she surprised us and started to get better and was moved to the rehab hospital.  She had been given a discharge date.  And then her tired heart gave it's last beat.  And it broke my heart.  It broke everyone's heart in my family.  And not a day goes by when I don't think of her a dozen times.  And at least once or twice those memories are coupled with tears.

A few days after my grandma passed away I received a phone call from Dr. Gentili's office with my decompression surgery date - June 22, 2010.  I won't reiterate the whole story.  It's here  and here.  It was the scariest thing I've ever had to face.  Worse than public speaking in grade school, the first day of high school, even traveling across the ocean to live in Italy.  I was petrified, but I was calm, prepared and anxious to feel better.  And I do.  If I had to do it all again, I would.  The difference it has made in my life is amazing, and I'm just 6 months post-op.  With 2 years to fully recover, I can only hope that I continue to feel this good.

The months after my surgery were long and very lonesome.  I did a lot of walking and a lot of physio at home.  I rested when I needed to.  I did what I could.  With the help of my dear husband I made it through.  I still struggle with my nerve issues in my right arm, but I will head to back Toronto Western on January 28th, 2011 for a nerve conductive study.  And that will hopefully provide a prognosis or at least a firm diagnosis.

November and December were good months, preparing for Christmas and craft shows and returning to work.  I kept busy with crafts as much as I could, a little at a time.  I did two successful craft shows and 1 trip to sell crafts at my mother-in-law's old office.  I'm very happy with the craft season this year.  As I was off work or only working 3 hours a day I had extra opportunity to bake, write Christmas cards, and get ready for the holidays.  I have never been a Christmas person, but this year I was actually in the spirit.  I wanted to get the tree up.  I was finished my shopping and wrapping early.  And I baked enough goodies for a small army.  And on the actual days I wasn't sick, exhausted or miserable.  I was fortunate to not get a headache or flu or cold.  (Well, I did end up with a bit of a cold on December 27th, but it wasn't on the holiday for a change!)

I'm very happy looking back at this year with all of it's trials and struggles.  I can say I'm still shiny-side up after all of it.  And that's what matters most.

Back to Toronto

Because the nerve issues in my right arm are ongoing, I've plateaued in my recovery, and I'm still experiencing lots of nerve pain, my family doctor referred me back to Dr. Gentili on the recommendation from my orthopaedic surgeon.  And within a week of Dr. G's office receiving the referral, I have an appointment for an EMG (electromyogram) on January 28th at Toronto Western Hospital.  Wow!! 

I'm just so happy I'm being looked at and it's not going to take 6+ months to be seen!  We haven't yet decided if we will go down the night before or just for a day trip again. Flying to Toronto in January can be a little dodgy if there's a snow storm.  And I was forewarned by Dr. G's receptionist not to be late.  The doctor performing the test hates when his patients are late.  I'm not a late person, I panic if I'm there only 5 minutes early... but snow can wreak havoc on travel plans!

My return to work is coming along slowly, but it is coming along.  I start doing something I haven't done in 6 months and all of a sudden it's done and I'm not really sure how I completed it, but it is done.  I'm still a bit overwhelmed, some of the files that I thought would have been completed during my absence are still ongoing, and others have closed that I thought would be still around.  And just getting used to the new stuff... a whole new computer system with Windows 7 - and I'm a Mac user at home - and a number of changes to the programs and software... And soon, a new keyboard with a track pad so I can ditch the thumb-ball mouse I've been using since my last shoulder surgery in 2003.  So my learning curve will just have to curve a little deeper for a while longer... The young lady who was filling in for me is still helping out on a few files, but she will be finished with the firm on December 30th... Does panic set in now??? I'm still only working 15 hours a week... How am I going to do a full day's work in 3 hours???  I can't think about it or I'll start to have panic attacks...

I'm going to focus on planning our trip back to Toronto and getting my nerves working.  The rest is out of my control.

And just to brag a little... The tree is trimmed, the lights are hung in the windows, the presents are wrapped and sit beneath the tree.  The baking is in the freezer and I have all the ingredients I need for Christmas dinner...  And I have the next 6 days before Christmas to relax!

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!!

Neuro Follow-up Tomorrow

Tomorrow promises to be a long, hot day.  Mum and I are headed back to Toronto Western Hospital to see Dr. Gentili for my posterior fossa decompression surgery follow-up.  

We fly out at 7 am and arrive around 9.  I planned out our day sort of.  We'll take the shuttle to Union Station and then walk up to the Eaton's Centre for some shopping.  (Why is it still called the Eaton's Centre if Eaton's went belly-up 10 or more years ago??)  Then we can walk or take the streetcar to the hospital for my appointment at 1:45.  I hope my mum's hip isn't bothering her because I'd really like her to walk through Chinatown!! I love it there.  It is so culturally diverse for 3 or 4 blocks and the bam - back to TO.  After my appointment we'll head back to the financial district and mall area for an early dinner at Red Lobster.  Then back to the airport by 6 for the flight home.  I mapped it out and if we walk all of it we're looking at about 10km / 6.25 miles, without the mall walking.  I can do up to 5 miles a day right now, but not all at once... So we may have 1 or 2 streetcar rides tomorrow.

I'm not sure what Dr. Gentili is going to say.  I'm sure he will agree that the surgery this far has been a success.  I don't know what he will say about going back to work.   Brainwise I am fine to go back I think, it's the dang shoulder that may prevent me.  I know I still have to have another brain MRI to check the decompression and CSF flow too.  But I think it will be another month before Dr. Gentili wants that done.  

Should be an interesting day. Tuesday I see my family doctor to determine my return to work based on what Dr. Gentili said.  And I will update my 3 loyal readers once I'm home from that appointment.

For now, I'm going to go soak up some sunshine as it is already 28C / 84F with the humidex.

Pre-Admission and Surgery

It takes a lot to sit up and type for any period of time, so I think I'll break up my surgery experience into a couple of posts...

Pre-Admission was on Monday at 8 am.  The usual - blood work; an hour long interview process about previous surgeries and reactions etc; an ECG (because of past reactions); meet the pharmacist; meet the anesthesiologist... it was a 4.5 hour appointment.  I was tired afterwards, but I still had an MRI scheduled for 6 am on Tuesday. 

Surgery day!!  I was awake by 2... we had to be up at 4:45, but still, 2?  Really?  And it wasn't nerves - I was freezing because our hotel room was an ice box!! (No A/C control in the rooms - wth!)  Anyway...  hubby had a shower and we walked over to the hospital.  The nurses in POCU (Pre-operative care unit) sent me straight to MRI.  Well, MRI didn't have any record of me so back to POCU we went.... Up and down the giant maze of a hospital.  Hubby wasn't allowed in POCU... so he had to wait in the hall.  I waited to have the nurse figure out what was going on with my MRI.  The changed me into a gown, pj pants and a robe all size XL!!  Ummm.... three of me would fit.  It was comical.  My admitting nurse was an absolute hoot.  She has a great sense of humour for dealing with anxious people at 6 in the morning!  She asked everyone if we were naked as the day we were born... she kept the mood light. And finally hubby got to come in.  Turns out there was a problem with the MRI that morning so I was going for an angio CT instead at 7:30.  No worries there.  Equipped with a warm blanket off we went to the waiting area.... for a long day of waiting.  I had my CT, nothing too exciting, but came away with 7 markers on my skull to guide Dr. Gentili during surgery. Then we waited.  My surgery was supposed to be at 11 am.  When no one came out by 11:30 I went back to POCU to see what was going on.  The nurse was really nice and thanked me for being so patient.  (I could tell a lot of the people in there were not being so patient on Tuesday... poor staff) Back to wait.... At least we had a tv in our little area and met a lady from Sault Ste. Marie also have brain surgery.  So time passed, not quickly, but it passed.  Dr. Gentili came out before 1:00.  He didn't know if I was going to be able to have my surgery!  It wasn't staff or OR space, there were no beds in the ICU step down unit!  He knew how far we travelled, how long it took to get my surgery date and he was doing everything he could to get me in.  Then, about half hour later, my name was called :)  I didn't even hear the nurse! Hubby did.  And in we went to the POCU again.  The anesthetist came to see me, a couple of nurses, Dr. Gentili's staff - Dr. Kim, Dr. Andre and at least one more doctor.  Then they had to find another nurse for my surgery - thank you to whoever the lady who said yes she would stay!  My whole surgery could not have gone for that 1 reason!  I got my first of 3 IVs put in, and then it was time to kiss my husband good-bye!! A quick trip across the hall.  The anesthetist started the second IV, and I had an oxygen mask put over my face.  The warm sleepy drug made it's way up my arm and that's the end of my memories for surgery.

Post-op.... later

My Deepest Gratitude

Here I am, 1 work day, 1 Saturday and a Sunday morning left in town before we depart for Toronto.  And I'm already being overwhelmed by gracious gifts, cards, flowers, prayers and healing thoughts.  I am truly blessed to have such a wonderful family, fantastic friends and colleagues and even clients!

I try to be a humble person. I don't beg to be the center of attention or be made a fuss over by anyone really except my husband.  He's supposed to spoil me and flatter me.  But the friends and clients and people coming out of the woodwork supporting me before my surgery is overwhelming.

A client who now lives in the US sent me flowers - the most beautiful bouquet imaginable!

My massage therapist and former chiropractor got me a card and a free massage gift certificate.

My yoga instructor gave me a frog candle.  (We have a mutual affection for froggies!)

One of the ladies I work with offered to come do my housework after surgery! (I told her no, but she can come and visit!)

My male boss sent me to another Reiki treatment - so that is 6 treatments in all now!  

The department I work in are all going to lunch tomorrow at one of my favourite restaurants - Caribou.  And I will have my all-time favourite dish - Pad Thai.... yummy!!!

Plus healing thought requests send on my behalf from a number of people.  And prayer groups too.

I haven't even left town yet!  I'm extremely grateful to everyone for everything.  I'm kinda sheepish... I am trying not to make a big deal out of this.  (Yes, I know it is a huge deal. But I'm trying not to get worked up about it at least until Monday.)  

I have confidence that I have made the right decision to have surgery.  I have confidence that Dr. Gentili will do a great job.  I will recover well and I will regain some of my quality of life.  I realize I will have things I can never do again like ride a rollercoaster, but I should be able to do most everything else!

As Willy Wonka said "you have confidence and confidence is key!"

14 days to go!

I was quite annoyed on Sunday.  During my soak in the tub I mentally composed what I thought was a great blog post.  After my bath I grabbed my MacBook and settled in to type it out.  Click publish post.... "blog server is currently performing maintenance.  Please try your post again later!" After I spent 45 minutes typing! And it deleted it.  I couldn't even go to the backup draft!  So, aggravated, I ignored my blog for a couple days and hope the server is up and running properly tonight when I press publish!

I was all set to write about last week.  It was a busy week. I've been more "ditzy" than normal (remember, natural blonde, not dyed) and I think it has a lot to do with the pressure in my head.  I feel like my head is really wobbly and heavy.  I have real balance issues when I bend over to pick up something or tie my shoes.  Even just sitting on the couch I feel like my head will bobble over at any time and I will land on the floor.  Plus my legs are numb lots.  It's unsettling.  Not pins and needles, but uncomfortable.  And with a wobbly head my stomach follows.  Yech.  I feel terrible quite often, but often it only lasts for 5 or 10 minutes.  But it's 5 or 10 times a day.  Like having a 5 minute flash of oh my gosh hot, stomach cramps, nausea followed by icy chills....  Surgery I hope will resolve some of this!! 

Thursday was our 4th wedding anniversary and 12th year together and I spent most of it in bed.  Now, get your mind out of the gutter..... When I woke up and looked at the clock in the kitchen there were 4 sets of numbers.  Not a very good idea to drive to work when you're seeing in quadruple!  But I wasn't in any pain.  So, back to bed, ice and Advil.... Woke up a little while later and it was worse and my head was ready to EXPLODE!! Definitely not going to make it to work in such a state so I call in again to say I wouldn't be in at all.  Often if my eyes go funny there is no pain and an hour or so later I'm fine.  Not this time.  And not the last few times.  Now the visual disturbances are accompanied by mind splitting PAIN!  Easily an 8 / 10 on Thursday.

I also had my pre-op appointment on Thursday.  All is well.  I'm never going to die of high blood pressure with my average of 100/60.  (normal is 120/80).  My doctor signed my health travel grant and my pre-admission forms.  Now once I'm back I will have to see him again to fill in my disability certificate for work.  He said he would remove my staples if I am back in Thunder Bay by that time.  I think I'll go to the walk-in though.  My doctor is in his 80's and doesn't have the steadiest hand!!  Don't want to hear any opp'ses (just how do you spell that?) when he's at the back of my just healing skull!

I could see when I got up on Friday but was still hurting.  But I had obligations I had to meet at work, so off to the office I went.  I had every intention of leaving after the morning meeting was over.... I got home at 5:15.  Yeah, once I'm there, it's hard to leave.

We're all set with travel and accommodations in Toronto.  My wonderful cousin has offered to pick us up from the airport and we'll have dinner together.  She is also giving us keys to their condo (just 4km from the hospital) so we have somewhere to stay once we run out of hotel on Friday morning.  With the G20 summit the week of my surgery it is insane trying to find somewhere to stay near the hospital for under $190 / night!  And my cousin and her husband are leaving the city before the summit to go to the cottage.  We're all set!  Toronto Western here I come!!

So I have 8 days left at work.  I'm not being given any new files.  I'm finishing up training my replacement and tidying up all of my filing, purging files, and making sure nothing is left to do.  Next week the department I work for is all going for lunch to "celebrate" my surgery.  Or mourn my departure!! My female boss is already missing me and I'm not gone yet!

[I just had to go back and remove the word so from the start of 3 out of the 4 paragraphs I used it to start.  Somebody sign me up for a writing class!]

With just 2 weeks until my surgery I have started to pack a little.  Things like my neck pillow, scarfs, baby shampoo and gravol (dramamine) are all ready to go.  Just deciding on what luggage to take.  I think we will pack in 1 suitcase so hubby only has to manage 1 on the trip home.  I'll take a travel bag with me for my stuff I'll need at the hospital.  Won't need much.  I'll barely have any hair so a tiny bottle of shampoo, tooth brush and paste, pyjamas, slippers and a box of peppermint tea.  I'll consult with the admissions clerk about my 101 things I can't eat, so we might have to find a little grocery store for a few snacks on Monday afternoon to bring to the hospital.  I'll probably stash baby cookies and 100 calorie packs in our luggage for the trip down too.

So, I can't remember a thing I was going to write Sunday, but I think I have updated all the same!!

22 Days to Go!

The count down is on...

Flight to Toronto is booked.  Hotel is booked for a long as I could book one for... And it is just across the street from Toronto Western.  As for the rest of the time we're there, well .... WARNING - travelling to the city hosting the G20 summit the week of the summit means NO HOTELS!  I searched at least 20 hotels, motels, bed and breakfasts and even 2 hostels close enough to the hospital to walk or bus to.  Nothing... and I mean nothing available for a price we can afford.  Most are $190+ per night.  And the hostels - uh, no.  Sorry, not subjecting the hubby to rodents and bed bugs.  UGH!!!  I've sent an e-mail to my cousin in Toronto.  She offered us a place to stay with them.  I sure hope the offer still stands if we are still in Toronto on the Friday.  I'm sure it will be!

My best friend is supposed to come from Welland to see me in Toronto and I'm really looking forward to seeing her!  It's been almost a year since we've seen each other.  Too bad she'll see me likely at my worst!

I've started putting together the essentials too.  My scarf to wear home.  Those powdered ice packs you shake and they become cold.  My own tube of toothpaste because it will be very hard to share with hubby if his is at the hotel and I'm at the hospital!  And a list of people's phone numbers and emails to keep in touch with everyone while we're there.

My pre-op appointment is on Thursday - which is also our 4th wedding anniversary.  I've got my haircut booked for the 12th.  I'll try to post before and after pictures.  It's all coming off.  I can't manage this style without hairspray and mousse and a curling iron.  I also have a massage and a Reiki treatment booked for the week before surgery.   I'm going to be beautiful and relaxed!

I bought some new pyjamas on the weekend, but couldn't find any more that buttoned up the front that I could afford. Grrrr...  But I have one pair and then a t-shirt and capri set I can bring too.

I did have an accomplished 5 days off work too.  I have my tomatoes planted with hubby's help.  And I planted a few new perennials and a few annuals just so the gardens don't look empty now that the tulips have died off.  It took me 3 days to plant what I bought with my mum on Thursday... but it was all good.  I'm just not used to operating so slow!  And I have my first sunburn of the season.  Mild, but I guess I should have put 30 SPF on instead of just 15 yesterday.  Ah well...  no huge deal.

So, in the next three weeks I have to ensure that my replacement at work is up to speed on everything I can teach her.  And still work on my regular duties.  Should be an adventure!

June 22, 2010

Got my date!! HURRAY!!!!!!!!!!!!!!!!!!!!!!

Dr. Gentili's assistant called today at lunch.

Have to be in Toronto for pre-admission clinic on June 21st.  I will be admitted at 6 am on Tuesday June 22, 2010 to Toronto Western hospital!

Okay, so now, panic! 26 days.....

Already looked up flights and hotel.  Just waiting for my pre-admission time before I book the flights.  Might have to arrive there Sunday night.

So 1 month to the day from losing my grandma I will finally have my posterior fossa decompression!

Pushed Back - Again

I don't even have the words to express how I feel right now.  I called Dr. Gentili's office on April 20th to make sure I am a priority on the May surgery booking list.  Dr. Gentili and I had an e-mail back and forth before that how I didn't make the cut for the April bookings and I was now priority for May. 

I hadn't heard anything so I called and left a voicemail with his office this morning.  His receptionist called me at work to tell me that I wasn't on the May list.  I'm gutted.  I have no emotions left.  I'm sitting here (at work on my lunch break) with tears in my eyes.  I can't stop the tears.  I am disappointed.  I'm dispondent.  I don't care about anything.  It's depressing to think I have to wait another 30 days to find out if I'll make the June list.  I asked the receptionist about the delay and she said there were patients waiting a long time to have surgery.  To which I replied I wrote to Dr. Gentili on January 16th to go ahead and book me.  She only replied "oh, I'll have to speak to him". 

I just want my date.  I don't care if it's a month from now, but can't they look ahead at their schedule and go - hey, [insert date] is open, stick Ms. Elvish in and let her know! But no.  Nothing. Nada. Zip.  Not gonna happen.  They are going to leave me waiting and waiting and waiting while my symptoms progress and my life waits on hold.  I have no quality of life.  I work, walk and go to yoga.  I can't do housework or yard work, carry laundy, go for groceries or do much without triggering a headache.  And that includes crying.  So, now I have a headache to top off my wonderful phone call this morning... great.

I might e-mail Dr. Gentili later, once I've thought this through, and ask if there is anyone else in Toronto Western who he would be comfortable to refer me to that would be able to do the surgery soon than he can.

I've reached despiration....

Denied

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....

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.

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...

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!!

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.

98/60

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!! : )