Sunday, July 10, 2011

A picture is worth a thousand words - my journey with Idiopathic Intracranial Hypertension

It has been over 2 weeks since my last appearance here. On the day I posted my last entry my world was threatening to fall  apart.

It all started with a funny "spot" in my left eye vision that suddenly appeared on the afternoon of 1 June. I waited exactly 23 days to see my optometrist and then I was told things that I never expected to hear from an optometrist: brain tumour, MRI, Lumbar Puncture, Pseudotumour Cerebri, loss of sight. I sat in that chair crying and then a deluge of chaos began.

The reason for all of the scary words above came from the pictures below. They show what is known a Papilledema, which is optic disk swelling that is caused by increased intracranial pressure.

In the pictures below (taken by my fantastic optometrist and admired by me as a photographer), you can see a smaller light circle to the right, that is the area where the optic nerve meets the back of the eye. I am told that there should be a distinct and clear darker ring around it and mine is quite fuzzy and blurry and light, which indicates that the eye is being pushed in from the back due to the increase pressure in my head. Not good!



Papilledema can be caused by a few things, which is why I embarked on my very own "House-esque" differential diagnosis. I would say that the scariest point was the MRI that I had the day following all the craziness at my optometrist, which was done to rule out a brain tumour. Thankfully all was ok and I am in the clear there. But I suspect my husband and I may have aged substantially through this process!

Since then I've endured a slightly problematic Lumbar Puncture, which found that my CSF pressure was in fact elevated and thus the cause for my intracranial hypertension. After the LP I developed the dreaded spinal headache, which I would not wish on my worst enemy. I lived with that obnoxious headache for 9 days and then relented and had a so called blood patch.

During a blood patch an anesthesiologist sticks another needle into your back at the sight of the original LP (in my case it took 2 attempts, I'm such a lucky girl!) and then blood is drawn from the arm and injected through the needle into your back. The blood coagulates and thus fixes the CSF leak which is the cause of the post LP headache. I experienced a backache which concerned me somewhat but the headache was gone instantly! Now, 3 days after the blood patch I still feel my back a little but I'm much better and grateful that the headache is history.

I still have to go through a couple of tests to finally get to the diagnosis, which we should have by the end of the week. 

A picture is worth a thousand words, my picture alerted my optometrist Dr. John Gallagher about something potentially life threatening and he took the steps to get the ball rolling. It was a a roller-coaster ride but I'm eternally thankful that I listened to my body and did not take that silly little "spot" for granted, that I sought help and found the right person for the job.

Through all of this my dear, dear friends have been helping me and my family with looking after my son when I've been unable to, they have been by my side every step of the way (even late at night when I was in tears and thought I couldn't go on) and they will never know how much they mean to me! You ladies rock!!

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