Monday, November 22, 2010

My day at the hospital: Got some bad news :(

Phew!. What a day this has been. Had an appointment with neurology today, so was up at the crack of dawn this morning for the hour’s drive and then the loooooong wait at the hospital. As I have mentioned before my BIH has just been getting worse and worse over the last 2 months. The headaches, nausea and fatigue have been pushing me to breaking point and it has started to affect my vision and hearing again which is serious.

Unfortunately when I did see a neurologist ( well doctor training to be a neurologist or psychiatrist- state health care!) the news was not was not what I expected and actually far worse than I was wanting to hear.

I was diagnosed with Benign Intercrainial Hypertension last year- this is a fairly uncommon condition in which excess cerebral fluid forms on the brain. No one knows what causes it and there is no cure. I had been sick for most of last year with debilitating headaches, nausea and fatigue. Eventually I started to go deaf and blind in one eye and that’s when I sought help. I was told, very gently that I may have a brain tumor and for 10 days my family and I prepared for the worst. Thankfully an MRI ruled out any tumors or lesions and after a lumbar puncture (spinal tap) I was diagnosed with BIH. I talk more about my diagnosis and treatment here

For the past six months it virtually disappeared and then suddenly decided to rear it’s ugly head again. I had thought when I went in today that the doc would just prescribe a lumbar puncture as usual and then I would go on my merry way. But the doctors were very concerned that my BIH has just come back, out of the blue and even more concerned that my sight is deteriorating. They have booked me for another lumbar puncture on Wednesday – the only way to tell if my intercranial hypertension has increased. If the hypertension is high then they will be referring me to a neurosurgeon for brain surgery. You can imagine how shocked we were.

To top off the day they sent me to opthomology to do a visual field test- this is to check my blind spots and I was presented with more bad news. I have two massive blind spots on the outside of both eyes and my optic nerves are swollen again. They still have to do more tests but unofficially it appears that I have started to go blind- this is the long term effect of BIH.

Right now none of this has been officially confirmed. I just have to wait until Wednesday. I don’t know what is worse when it comes to a health crisis- knowing the possibilities and letting your imagination run wild. Or being completely ignorant until you are hit with the cold hard truth.

I am calm and I am so thankful for that, but I have a feeling my mother is freaking out. This is mostly thanks to the idiot head of neurology telling her last year that surgery was the final option because of the risks. When she asked him what the risks were he casually said, “Death”. This was the same dumbo that told me I had to be “strong” to be sick in that hospital. And when I was told I couldn’t have children he “sympathized”, “It’s a shame, you’re such a pretty girl”. It’s a shame he has no proper beside manner!

Anyway, like I said none of this is definite and that horrible man was just presenting us with the worst case scenario. I have said before that I am thankful for the health care I get through the state: It's far from fancy, most times it's inconvenient and disorganised, but if you compare it to the health care or lack of that millions of other people face on the African continent, I actually am very lucky and I will continue to have faith in them ( I actually don't have a choice!). I most likely will have a freak out session at some stage but for now whatever the outcome my be- I am going to carry on with my life- continuing to fight my depression, GAD and daily battle with food, looking after my little girl (that's my next post), my mother and my wabbits and preparing for my future by living in the PRESENT.
Here are some pics that we took during the long wait. Blackberry + boredom = weird photo's
The "homely" looking hospital reception: The Cage!

Neurology waiting area, look might just see how bored everyone one is.

About the 5th time I read this magazine

 Finally home to my sweethearts :)


  1. After reading all that you went through at your appointment I have so much admiration for your strength and courage. That hospital is ridiculous - NICE BARS - so warm and cozy there - geesh... at least the final picture is adorable - I see that you still have both of your cuties - are you planning on keeping them both?

    I'll keep you in my thoughts and prayers that your eye sight improves as well as the pain and everything else that BIH is making you endure...


  2. Hey Christine, yeah the hospital always looks so "homey"- they might as well start handing out milk and cookies:). Those bars are up because they handle money in there- not that would make a difference if someone was really determined to steal.

    Unfortunately my last spinal tap hasn't really worked as I'm still in a lot of pain.

    Those wabbits are keeping me on my toes..yes I'm keeping both of them- I've just spent the afternoon running around after Basil- who escaped for the 3rd time!