Look Ma!! It's my (new) brain!

I had my brain MRI yesterday for the post-op baseline.  I've sent the CD-rom off to my neurosurgeon this morning.  I was fortunate to get my old PC up and running yesterday afternoon and got to see my images before I sent it to Dr. Gentili. (craziness... can't load the CD on my Mac!)

Look!! There's all kinds room for my brain!! I'm so excited!!

With my diminished headaches and improvement with the other symptoms like my speech, vision and thinking, I'm sure the neurosurgeon will say the surgery has been successful.  (Okay, I had to spell check diminished three times to spell it write - maybe my cognitive is still a little off!)  I'm extremely happy with my progress so far.  If I had to, I'd go through it all again.  Well, maybe we could leave out the brachial plexus injury...

Speaking of the shoulder, I was back at physio this morning for another set of instructions and to report to my physiotherapist.  She was so happy with my little spreadsheet I developed to track my progress.  So I will continue and I will add the other activities as she assigns them.  Today she also did some assessing for Thoracic Outlet Syndrome (TOS).  I am positive for it in one of the 3 or 4 positions.  So, there is another piece in my puzzle.  I will also likely need a custom wrist splint made for me to go back to work.  I have the $25 one from the drug store, but it is aged and falling apart so when it comes time to replace it, it will be custom.  In addition to my typing and writing and grip strength I am also putting books up on a high shelf to simulate filing minute books at work.  And yes, I'm sore.  Time for some down-time before I make dinner.

Happy Halloween!!

I'm so tired of writing for my work hardening that I can't come up with any ideas for my blog.  Yep.  Writing up to 8 times a day can really throw writer's block at you.

So here's where I stand.  Waiting to see the orthopaedic surgeon on November 30th.  At that appointment she will have my neck and head MRI results to see if we can figure out why my shoulder feels like someone has a flame-throwing pointed at it right now. And why my fingers on my right hand only work when they feel like it.  The rest of the time they feel like wood.  

I persevere with work hardening up to four hours of the day now.  Typing, writing, pushing and pulling drawers, screwing nuts on bolts, squeezing the life out of my squeezy thing - a motorcycle, and my stretches.  I'm tired.  I'm sore.  And I'm pushing through.

In other exciting news Disney is coming out with a new princess movie!! Tangled will be out November 24, 2010, and introduces Rapunzel to the little girls of the world.  Quite by coincidence my Halloween costume is Rapunzel!! And I got quite a few comments from little girls last night as I handed out treats!  Next year I'll be right in fashion!

We had a great Halloween this year.  The weather was mild and dry with little wind!!  I remember years with snow storms and tugging my costume over my snow suit.  We had 65 kiddies stop by, which I thought was lots for a Sunday night. I ran out of candy and turned off the lights about 8:15.  Not bad.  Our first treaters were here around 5:30, just as I lit the pumpkins and candles.

No, I'm not as talented as the fellow who carved the pumpkin in my last post, but here are my pumpkins all the same...  And I cheat.  I put these guys away every year and take them out next fall.  They're foam!  One of the best craft inventions ever!  One of the girls that came by asked if I painted the pumpkins white!! She hadn't seen a white pumpkin before.  I had to softly tell her that they are foam.  And then she laughed.  But yes folks, there are white pumpkins!

Visitors, MRI, Halloween etc...

I promised, and I shall reveal all of the wonderful things I experienced last week when my best friend in the whole wide world came to town.

Because she travelled with her mom, a young 82 year old wonderful lady, who is in a wheelchair, we agreed to meet for lunch.  J (aka mom) was meeting her sister and some friends for lunch at a new restaurant, by new, I mean open less than a week.  And while she visited with her family and girlfriends R and I got to sit together and have lunch.  Wow.  Catching up on everything that has happened in the past couple of months.  To be completely honest we haven't been in touch as much as normal this summer / fall.  Life - it gets in the way of everything.  So we are well caught up on our lives, her 3 kids and their comings and goings, the houseful of pets, and all points in between.  God how I miss her already, just 6 days later.  Our 2 hour lunch was bliss.  We just pick up where we left off.  Best friends.  Plain and simple.  Miss her, miss her, miss her like crazy!

In other news...

C-spine MRI is tonight at 10 pm.  Well, arrive for 10 pm, MRI will be thereafter... I will arrive early, as usual for me, panicking all the way that I will be late.  I'm a worrier.  Grandma said she did enough for 2, I do enough for the whole family.  It's a 6 minute drive, then parking... not a difficult scenario at 10 pm.  But I will be out of the house by 9:30.  Crazy, neurotic, yes.  But you can't change me.  Not much anyway.

Halloween is just a few days away.  House and yard are decorated.  And today we had a south-easter blow through... Time to go retrieve my ornaments from around the yard.  For the first time ever I own a costume for handing out treats.  I wanted like Millificent from Sleeping Beauty...  Not happening at our stores and not inclined to make it.  I settled for a nice homemade costume at the 2nd hand shop - Rapunzel - it was going to just be a princess or medieval woman, but then I found a wig for $11 - blonde, braid to my knees.  Cool.  I can work with that.  And all for $24.  Not bad.  I have tights and boots or shoes to wear already.  (And entire under-the-bed box of tights, leggings, nylons, knee highs... I'm an impulse stocking shopper... )  I just have to get the treats into my little baggies for handing out and we're ready for Sunday.  On this year's treat list - O Henry, Reese cups or Reese's Pieces (those just may stay in the box :P), suckers and rockets.  What's Halloween without rockets!?  We don't carve real pumpkins anymore since the invention of the foam pumpkins at Michael's crafts.  We have 4, I've carved them all and I stow them away every year.  I love intricate pumpkin carvings, so these are a lot easier on my hand / arm and my pocketbook!!

No, I didn't carve him... But it is amazing!!!  Artist is Ray Villafane - love the zipperhead!!! 

Shoulder Update

I'm beginning to feel like this is a never ending circle of assessments, appointments, physiotherapy and MRIs.  And all I want is to get better and go back to my life!

I saw the orthopaedic surgeon yesterday for my shoulder.  She reviewed my MRI results - there are no tears in any of the muscles or ligaments of the shoulder.  There is a cyst on the head of my humorous, but it is consistent with the anchors placed during my two shoulder surgeries for the rotator cuff.  This is good news - no tears = no need for surgery. 

So where does that lead us??

Orthopaedic agreed with my physiotherapist's diagnosis of a possible brachial plexus injury.  And to see if this is the case, another MRI of my cervical spine has been ordered.  I'm already having an MRI on my head on November 7th as my follow up  from my decompression surgery, however the head shots only go to C2 at the most.  The brachial plexus anchors from C4 to C6 and T1. 

Because I am still in inconsistent pain and it is not fully diagnosed or controlled, orthopaedic said no return to work until she sees the MRI results in early December.  (Yes folks, it takes 2 weeks for the radiologists to read our MRIs after the scans are done, and then allow about a week for the report to electronically cross the hospital parking lot to her office, get downloaded and placed in my file.) If it is a brachial plexus injury then the orthopaedic will be sending a report back to Dr. Gentili and I'll be heading back to Toronto... They don't deal with it here unfortunately.   She advised my physiotherapist to start work hardening for a prospective return to work, if I can tolerate it.  My pain is so intermittent that this will be an experience.  Difficult, easy, painful, don't know how it will be.  I'm on my way to physio this morning to report to Bee.

Luckily I saw my family dr. in the afternoon yesterday as well and he ordered the C-spine MRI with a 10 day window, instead of the up to 12 week wait.  He recommended that they have my C-spine done at the same time as my head MRI - I doubt it is possible, but I can only hope the booking clerk can fit both scans in on the same day!

But gotta run!! I'll report on my lunch with my best friend and phyio's reaction to the orthopaedic's notes later!

Autumn Splendour

I am fortunate to live in a beautiful area on the shores of Lake Superior.  Last weekend we went for a drive down the lakeshore... This is Candy Mountain.

Lake Superior from Mt. Josephine

The NorWesters

And a couple days later, we took a drive to Kakabeka Falls to see the falls and the gorge... breath-taking.  But we didn't stay long.  They wanted $5.25 to park for 2 hours, exact change only, in coins - which we didn't have!!  So rather than risk a $30 fine, we stayed only 5 minutes or so.

I LOVE autumn in Northwestern Ontario...  But dread that winter comes next!!

In other news, just quickly, my MRI results are back on my shoulder... no tears in the rotator cuff!! Hurray! However, the rest of the report leaves me with questions - thickening this, bursa that... And my physiotherapist can't give an opinion on those findings as she is not a surgeon.  So why my shoulder is it so sore and so hard to move is still undetermined!!  Bee still believes that I have nerve damage and we're just working on keeping me moving.  I do the exercises she gave me two or three times a day - about 20 minutes each set.  I see the orthopaedic surgeon on October 21st... and we'll see what the verdict is.

Appointments Galore

I feel like I'm living at a clinic, hospital or lab all this week and next!

Physio started on Monday morning with a 1 hour 20 minute very thorough assessment.  The therapist  isn't really sure what is going on.  There is a problem with my deltoid muscle for sure, and quite likely some nerve impingement as well.  She said there is definitely something neurological going on.  Could be as a result of my arm being externally rotated and in a fixed position for my 5.5 hour surgery in June.  

Physio gave me a couple of exercises to do at home three times per day.  Epic failure on the abductor extension to do a spider walk with my fingers up the wall.  I am in absolute agony trying to raise my right arm to the side.  I cannot extend my arm fully further than a foot from my side with it straight.  PAIN, burning, searing PAIN!!  And then I bend my elbow or turn my torso to lessen the pain.  Hmph... a definite sign of something terribly WRONG!

I also had my full physical on Monday afternoon.  Won't die of high blood pressure according to my family dr.  And just to be safe he sent me to the lab for the usual fasting blood work - cholesterol, sugars, B12, blood counts, etc.  Everything else looks good.

Wednesday morning before physio I went to the lab and sat for an hour... and they didn't get me in (!) so I went back after physio to see the vampires.   (Why when you tell the lab tech that you won't get blood out of my right arm did she insist on finding out for herself!! ARGH!!)  At physio it was more assessing and some nerve flossing and passive motion.  She is trying to get my shoulder moving.

Wednesday night I also had my MRI of my right shoulder to help find out what's up with it.  Results will be back in about 14 days.  The "magic fingers" sensation of the MRI bed is NOT good for a 12 week post decompression patient.  I still have a headache 2 days later... (sigh...)

Last night I went for tea with a Chiari sister.  We met before my decompression.  She has had 4 brain surgeries 7 years ago - decompression, patch, shunts... All at the age of 17!  She's a wonderful young lady and I'm so happy to know someone in town who I can sit down and talk to.  In a town of 100,000 people it's a rare find.... or not so rare... I know of 2 other Chiarians who have not had surgery and 1 sister-in-law of a co-worker who did have surgery... so in other words, Chiari is more prominent in my little town than it should be!

And back to physio this morning.  Heat, more nerve work and passive stretching, and IFC to finish off for pain management.  It's funny - I'm not generally in pain, but I go through fits and spurts.  Pain when I try to do something - fold towels, wash dishes, shampoo my hair.  But having the therapist move me through the motions is fine.  And frustrating.  It's hard to figure out what is wrong when she can't reproduce my pain.

Appointments are done for the week, thankfully.  Next week I have physio x3, massage therapy, eye doctor appointment, lunch with a friend, and that's just for starters!!  Thank heavens I'm driving again!

Orthopaedic Appointment

With luck, after I went to emergency on Friday for my shoulder, I got into the the orthopaedic surgeon today at the fracture clinic.

It was almost a three hour wait, but that is to be expected.  I've been through the fracture clinic plenty to know what to expect.

Dr. W came in and review my previous shoulder history from my last surgery in 2003.  Asked about my limitations, weigh-bearing, mobility, etc.  She recommended physio for now, and will see me again in 6 weeks to review the MRI results.  My MRI, fortunately, is on September 15th, so less than a week away.

And, I can start driving!! So, this weekend I will go out with the hubby and do some test-drives to make sure my neck and shoulder don't hurt too much to drive.  'Cause starting Monday, I have physio at 10am a bit farther from home then I would normally walk.  And I have at least 3 other appointments next week.  I'm sure everyone is getting tired of being my chauffeur.

I also got my appointment for my brain MRI - it's for November 7th! Argh!! I'm pretty sure Dr. Gentili didn't think it would take quite that long to get one done... I've e-mailed him to find out. 

Until my follow-up with Dr. W in 6 weeks, my days will now be walking, physio, and sitting on my duff with the laptop.  I'm trying to do some crafts every day but the pain is preventing me from doing much.

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!!

What to Report??

Well, recovery continues... brain and leg are healing well. I'm up and walking 1.5 miles every morning and sometimes up to 1.3 miles in the afternoon if it's not hotter than the Mojave out there!!  My shoulder is still giving me GRIEF! But I can't do much about it until I have my MRI and then see an orthopaedic... I have one locally and one in Toronto to whom I am being referred.  Whoever can get to me first I will see.  Yes, it's that frustrating and painful that right now I'd be willing to chop it off at the joint and go limbless.  Except, I would have to work on my left-handed hand writing again...

Seeing as I don't have anything to report on my recovery, I thought I'd post a pic of my latest creation...  

Christmas fairies - in red, pink, violet, blue and crystal. Red photographs the best. I've started working on some other designs too - Christmas trees - and I'll share them with you soon too.  I also really want to get out the fabric and porcelain heads to make some more angels.

It's pretty quiet around here so I have a lots of time to work on my crafts when I have the energy.  There are lots of days when my shoulder screams at me to stay away from the wire cutters and dishes of beads, but I try to push through and make one or two things...  Days like today when the humidity is high and the heat unbearable there's not much I can do outside, so sitting in front of the fan with my projects is it.

I have to place an order for more beads sooner than later it appears too.  I've been using them up like crazy.  My local store charges an arm and a leg and a foot for beads so I buy there in a pinch when I'm running low.  But my ultimate supplier for beads comes from, surprise surprise, the US, Florida to be precise.  The price difference when you can buy bulk is astounding - 18mm pearls $0.40 here, or $0.07 from the US, including shipping and exchange.  Not to mention the variety and the bulk bags I can get.  When I use almost 100 of a bead on one project and the local supplier sells the bead in bags of 100 - kinda gets expensive.

But not to bore you any further with talk of nothing anyone else in the world is interested in... I'll sign off and wish everyone a pleasant, cool evening.  

MRI results

The results are in from 2 of my 3 MRI - head and lumbar. 

HEAD - According to the radiologist the herniation of my cerebellar tonsils has minimally improved ?? How it has improved I have no idea!  Apparently it is 7.6mm and was 8mm. It all depends on who is reading the images. There is no hydrocephalus - yeah!! And they presume my arachnoid cyst is stable. Huh? You didn't look at it?  

LUMBAR - No visible abnormalities of the cord or conus. Good news!! There is minor disc space desiccation with an annular tear noted at L5/S1.  Basically my back is aging normally according to what I've read.

My family dr. did not explain any of the results to me because he only ordered the MRIs because I requested them as recommended by Dr. Heffez.  I'm sending both the reports and images to Dr. Gentili. Once I get the C-spine results I will also forward that report. Thank heavens for Wikipedia I was able to look up all of the vocabulary to understand what I was given.

So that is good news.  I don't have anything going on than was already known.  Just need the C-spine results to know for sure.

My dr. also prescribed me some Toradol.  Thank heavens.  Trying to manage headaches without any pain management has gotten old very quickly.  I had another headache Tuesday night through this morning.  I did have some Tramacet left from the sample the dr. gave me a while back.  I took it so I could get through last night and to the dr. today.  But it only helped for about 2 hours, made my legs and arms numb and I felt like crap.  And I had to take gravol (dramamine for my US friends) 4 times!  I left work early yesterday but I made it through today.  I started to feel better around 11.  Everyone cross you fingers that this half-decent feeling lasts through the weekend for a change.

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.

On the Waiting List

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

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

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

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

Oh!! I nearly forgot!! I'm truly a blessed person.  My male boss came back to town on Monday for some Discoveries etc.  And he brought me a gift.  His wife made me a quilt!!! Just for me!! And it has frogs on it!

He asked my sister-in-law Rose what I liked, and she of course told him frogs.

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

Here's a close up of the froggies:

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

THE FRIEND WHO JUST STANDS BY
B. Y. Williams

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

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 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 Journey Begins

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

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

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

I've been reading lots of blogs, joined 2 support groups, and researching all kinds of sites on the web. I've met a few people online  in Canada with Chiari too.  I'm a sponge soaking everything up until my appointment in October.

I'm not a witty writer like some other Chiari patients.  I'm not a pool of knowledge like others.  I'm just here to be me and write about what I'm dealing with and how I'm feeling about it at that time.

Thanks for reading...