My name is Rowanne and I was diagnosed with IIH and Chiari Malformation in October 2009 (2 months before i got married). I was having headaches and the vision in my right eye was blurry so I went to see my optho...he had this freaked look on his face and sent me to do a CT Scan because he thought i had a tumor the way my optical nerves were so swollen. After the CT Scan and a trip to a Neurologist i was sent to do an MRI where i found out i also had Chiari (just my luck) - so i was scheduled for a LP a day later.
After being placed on 1000MG Diamox for the first few months my dose was decreased and I've been fine since...however...3 weeks ago my headaches came back - and worse this time - along with numbness in my left arm. So off to my Optho and Neuro i went again. I saw my neuro yesterday who said my optical nerves are like balloons
and the numbness in my left arm is due to the Chiari...so looks like both my problems are acting up at the same time *sigh*.
He said that he wants to consult with another neuro to let me know what the next steps are, so I'm waiting patiently and typing to you all with pain in my left arm and a headache *what a wonderful world eh* - I'm sure you all understand ;)
I'm really happy to have found this site - as no one seems to take my illness seriously (other than my doctors and family of course). My colleagues at work look at me and say "but you don't look sick" - i just want to smack them - cause if they only knew!
to Heidi for starting this site - you have done so much for me and I'm sure many others. I'd love to hear from others - especially if there's anyone else out there from the Caribbean