Chiari is a life changing illness!!!
I have had headaches for over a year now but nothing i couldn't handle. My life changed in May when i started getting a headache like no other, then started vomiting , my vision got blurry in my left eye, got dizzy and had no clue what the heck was wrong with me. Few days passed with my symptoms only getting worse at this point the left side of my body was numb. After 2 ER visits and being admitted to the hospital, Dr. searching for brain tumors and aneurysms still no answers. Went to a migraine Dr. he gave me a handful of meds that did not work. ( By this point I'm beginning to think i was crazy) Next i go to a neurologist he says he has no idea whats wrong with me but he will try to figure it out he ran test looking for brain tumors and aneurysms again,( Now not only do i feel like I'm going crazy But i feel so alone nobody truly understands how i feel) And there it was CHIARI MALFORMATION TYPE 1. Neither of us knowing alot about it, I agreed to do a occipital nerve block, which may help for some people but for me it only made thing worse. Next i went to a neurosurgeon that specializes in cm1 he was awesome FINALLY someone who knows and understands how i feel!! But he believes there is more than that wrong, Oh no here we go again more test, So he sends me to another Dr. to check for a Pseudotumor cerebri (SOO-doh-too-mur SER-uh-bry) I did the test for this and was cleared i don't have it. So then i go back to my NS and he goes over everything again and says that i have cm1 with the start of a syrinx, and possibly Low-pressure hydrocephalus. REALLY!?!? What the heck just happened? Is he serious? I didn't come back for more bad and crazy news i just wanted to know how to get better and get my life back ( at this point I'm thinking hes not so awesome) So then i asked what happen why all of this now why only a few days after i turn 30 did my awesome world go to poop, Not many answers cause they don't know a whole lot about about it beside what they believe is that i have had this all my life and that my symptoms started because my brain settled. WOW!! Not really the answer i was looking for. So now your probably wondering why i have not hit the door running from this guy and the answer is 1. If you are a chiarian you would know we don't run any where because it hurts to bad and 2. In Tx we don't have many doctors around here that know much about this, and its not that i didn't believe him cause i did and he explained it very well its that i didn't want to here all that, it was alot to take in at the time. So now I am scheduled for Aug.16 to have Brain surgery (suboccipital craniectomy with c1-c2 laminectomy chiari decompression) and at that time they will check for Low-pressure hydrocephalus and if i have it they will put in a shunt. (more news i didn't want to hear). So before long i will be a zipperhead and not looking forward to it, just looking forward to living life again outside my room.
Before i end for the night i do want to explain the rest of my life since all this started just so other people out there with chiari know they are not alone because there is not alot of info, And no not everyone is going to have the same symptoms or all of them and no i have not dealt with it for years like alot of people but these few months have seemed like a life time to me. Since May i have lived in my bed with horrible head pain mine is severe pressure, ( sneezing, bending over and straining only make it all worse) i am dizzy all the time, my left eye goes blurry and i have even lose my sight at times, First i started going numb on my left side and recently my right side started, I have a horrible pain in my neck and shoulders, When my hands and feet aren't numb it feels like huge ants eating my flesh away. Noise bothers me and if more than one person is talking to me i cant understand them cause it all runs together and sounds like they are all under water talking, and in a house with 5 kids its pretty crazy hearing this sound all the time. I have managed to get this far with my awesome family and friends by my side i truly owe them the world. And thanks to EVERYONE for all the prayers because even though we don't understand it GOD does have a purpose and a plan for us and i truly believe this.
