ok so i wanted to raise awareness on this site since there are so many people from around the world that can help me spread the knowledge. :) its hard for me to talk about this since this condition has cause alot of craziness in my life. well i wanted to share my story with yall....
here goes nothing...
i have a special condition called arnold chiari malformation.
I went to the doctors one day because i thought i had another stroke, and when I got there I wasn't ready for what I was about to find out. They did some testing on me and saw that the back of my brain "cerebellum" was cones shaped and my spine was pushed into my skull. So a nuerologist came inside my room and introduced himself and proceeded to tell me what he thinks I might have. He wanted to do further testing, so i was so nervous and scared thinking the worst. He finally came back with the results and called a nuero surgent and asked his opinion on what he should do with me. My results came back and my spine was 8.5cm pushed into my skull. and the nuerologist said i was going to be immediately rushed to a different hospital to meet the nuero surgeon. Right then, I freaked out a little, but remained as calm as I could be when I finally got to the other hospital and met with the neuro surgeon.
The surgeon proceeds to tell to me at 5cm, they do a routine surgery for this condition, but I'm way passed that size. I would need to be checked in and have an emergency surgery. The Dr. asked me if I ever been treated for this and I responded no i dont know what it is and ive never been diagnosed with this. He asked me how the heck did i go 21 years without treatment (I was 21 at the time). He continued to explain to me what they would be doing, which you will see in the video below . You'll be educated on the type of graphing they did for my first surgery which was labeled "decompression surgery".
It turns out after surgery, my head kept leaking of spinal fluid which can "kill you". They immediately had to do 2CT guided drainages on my head and spine. Surgeon thought I was going to need a shunt which they were prepping me for. They didnt stop the leak, but I didn't need to have the shunt inserted. because Later, another nuero surgeon saw my ct and saw that my graph was torn. That surgeon told me I needed to be cut back open for a "re-graphing". I was even more scared this time, cause it was only a few months after my first surgery was done. I thought to myself "Omfg no way can I do this again" but i did. I thought everything was good, surgery went well and just had to go back to remove the stitches.
Well, the Dr. who removed my stitches did it in an very un-sanitary enviroment and gave me merca in the brain. Merca is a very deadly infection which could lead to death quickly, if not treated . I then had to be rushed in and they told me they needed to cut me open for a third time because I would die, if not treated immediately. They needed to flush my head, which means I was on two pick lines because of this infection. To make a long story short, now Im alive but alot of people have no idea what I went through and now its so hard finding doctors who know what i have and help me with my conditions. Medically, it is rated 1 of the top rare conditions and its actually just as common as MS. Im going to definitely have another brain surgery and I wanted to make a difference if something did happened to me during my 4th brain surgery.........* Please re-blog and comment and + to Raise Awareness for chiari malformation*
roshy yea im ok i just know alot of people arent educated on this condition especially doctors im trying right now to fight get it off the rare condition and haave docotors test all people with related symptoms for it
my aunt has this and she too has been through a couple surgeries and i seen her struggle with it for as long as i can remember but she has always stayed strong and kept going. all my respext to you for going through all this and making it through.
Chiari malformation must be removed from rare disease list! 1in 1000 people have one of the types of chiari. -being on rare diseases list makes fewer doctors and neurological docs and surgeons focus on it making it so complicated for patients to be diagnosed and treated! Awareness is key
Wow you are a really stroonggg person and i have added even that much more respect upon the respect i already have, i had a friend from high school who had this condition but didnt have it so rough, you deserve a check for all the shit you had to go through and props for remaining upbeat and positive cause you seem like such a bubbly person and i dont think i could go through that. you are a genuine soul that god has placed on this earth for a definite purpose. My heart goes out to you and your family, if you ever need to talk or vent im open for convo anyyyytimmme.#Respect#Strong#ChiariMalformationAwareness
It means so much to me for your support and I am not that strong I've fell a lot through this process and I'm still right where I want to be but hey ye world wasn't built in a day right lol xoxo
