My name is Stacy Baker and I was diagnosed with IIH in 2009. For a month or so prior to my diagnosis, I bounced around from my family doctor to various urgent care facilities, complaining of random symptoms such as whooshing in my ear, seeing things and very strong headaches, as well as post-viral syndrome and swimmer’s ear which were the mainstay of my diagnosis. Finally, I made my own appointment and drove to an ophthalmologist, with cars honking at me along the way. Naturally, I thought they were all crazy but I guess my driving must have been erratic as I was not to realize that I was legally blind at this time. By a miracle of God, I made it to the appointment but they quickly sent me to the ED after seeing my optic nerves, telling me that I either had meningitis, a brain tumour or a pseudo-tumour. After numerous scans, a spinal tap and blood work, I was diagnosed with IIH. After a week in the hospital and a bilateral optic nerve decompression, I went home with Diamox and a slew of other pills.
From 2009-2012, my condition was maintained on medicine but I developed side effects such as GI and cardiac problems. I lost an immense amount of weight too. Finally, after taking around 800 pills a month, I decided to get a shunt which was placed on 18 April 2012. You never forget the date of your brain surgery! To this day, my headaches continue as I have exhausted all preventatives, Botox etc.
The above may sound like a sad story but, for me it is not. I never seek empathy or sympathy. Instead, I show people that it could always be worse, for example I could have had a brain tumour and not lived to see today. Yes has it been challenging and yes I have been sad at times but nothing has ever made me stronger. I am now more of an advocate for myself and much more aware of how precious life really is.