Sunday, January 17, 2010


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

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

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

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

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


  1. OMG! I could have written this post. I feel the same way about Chiari. Living with the headaches is just not a good quality of life. I am seriously thinking about having the surgery too, although it scares the hell out of me.

    Hope you feel better soon.

  2. I was in your shoes this past October and November. Quality of life was almost zero. I had a successful decompression surgery on December 8th and am so glad I did it. Hang in there!