Buh-bye ol' laptop

Our laptop entered it's last stage of life on Friday and by Sunday afternoon Thomas confirmed its demise.  So I am computerless at home and I cannot blog from my iPod.  I haven't been able to get this site to allow me to mobile blog yet - not enough time to research it. 

So if I'm missing for a while longer, you at least know why.

In other news - I've spent nearly every day at the hospital since April 24th - not for me for a change, but sadly for my dear grandma.  She has artificial heart valves and is battling a major bacterial infection right now.  It is very difficult to see her so ill again.  I go up daily (well, I missed 1 Sunday) and help or just sit with her and my papa.  Grandma just turned 83 and with all the heart trouble she has had I am truly blessed to still have her in my life.

I am also impatiently awaiting for Dr. Gentili to call some time this week with my surgery date for May.   I don't know why they call us patients - I'm not patient anymore! I've had a couple weeks of headaches off and on, bad enough to resort to trying Maxalt because I can't take Torodol while I'm at work. Grrr.... and the headaches are becoming more frequent again.  So much for my 36 day stretch of glory where I didn't need anything stronger than Advil.  Boo! Oh well, I knew it wouldn't last forever.  Just hope Dr. Gentili's office calls soon!!!!!!!!!!!!!

Until then, I'll be divided between grandma's hospital room, work and my dark bedroom with my ice packs.

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.

48 hours of pain

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

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

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

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

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

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

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

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

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

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.

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.

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!!