Hi Everyone,

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!

A BIG 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

Talk soon!
Rowanne

Hi Rowanne a big warm to the group and I'm so sorry you're having such a rough time. Having IIH is hard enough but to have the complication of Chiari Malformation on top of it must be quite a battle. It could be having another Neuro look at you that they may be considering decompression for the Chiari. We have another member Charlie, who also has IIH and Chiari Malformation, and she had decompression surgery for it, and also has an Omayer reservoir on her shunt. Since her surgeries she is now back to horse riding and living a full life with her husband and 3 children, so don't give up hope about having your life back to normal.

I totally understand about colleagues not understanding your condition, mine were the same until I gave them information about it and told them it could happen to them without them even knowing it. I think because it's a neurological illness, and a rare one, as they will not have heard of it before they don't recognise it as a disease like they would cancer or multiple sclerosis for instance.

We have created guidesheets to help you explain to friends and colleagues about IIH here are the links you need that will help. I hope they help you, and we are here for advice and support anytime!

Hi Heidi!

Thanks for responding - I'll try and find Charlie so we can talk

Still waiting to hear from my doctor, so I'll keep you updated. Thanks again for all the support

Rowanne