Kayla's Chiari Journey
Donation protected
My name is Kayla and I have Chiari Malformation. For several years I have had bad headaches however about a year ago when my arms and face started going numb and my headaches were so bad I couldn't get off the floor I knew something was wrong.I finally got the doctor to do a MRI where it showed Chiari. I now have extreme migraines that come without warning, numbness in my face and arms, blurry vision,extreme neck pain and dizziness. These symptoms can come on very fast and without warning causing a major struggle in my daily life. I hate asking for help however some days I feel like im at my last straw with pain and memory loss I just want to feel better to enjoy my kids.
Chiari Malformation is the herniation of the cerebellum into the spinal cord due to a skull malformation. Basically, your brain is falling out of your head and being smashed by your spinal cord. This blocks the flow of CSF (cerebrospinal fluid) causing it to collect and cause cysts on the spine (syrinx) and pressure on the brain. THERE IS NO CURE. The only known treatment is Decompression Surgery (surgery all the way to the brainstem... removing part of the skull, part of C1 and possibly C2 of the spine to make more room for the brain). They may also remove portions of the tonsils of the brain, before covering the opening with a skin graft.
CHIARI CAN BE FATAL. The cerebellum controls more than just balance. It tells you when to breathe, how to swallow, your heart rate. It helps with thinking tasks and other cognitive functions. The nerve endings that are being damaged right now can be permanent, and can also cause paralysis.
There are only a handful of specialists in the country that treat Chiari and I have been blessed to find Dr. John Oro in CO. In October I traveled to CO to get his opinion and he feels it’s best for me to have brain decompression surgery. I am very lucky to have great insurance where the surgery will be covered. However this money will be used to help with any bills while I’m unable to work for 3-5 months, traveling to CO for the surgery (I will be in icu for several days and then a regular bed for a few days) then I will have to go back for a follow up, also this will help with any unexpected expenses that might come up while I’m out of work. I hate asking for help and will be forever grateful for anything I receive. I want to get back to my family my job and have my life back. At the bottom you will find some information about my condition, the surgery and my amazing surgeon.
Chairi information
https://youtu.be/50nI45Qn878
https://youtu.be/x3l2YMUuwfs
Dr. Oro
https://youtu.be/kRNcx3uSngs
Chiari Malformation is the herniation of the cerebellum into the spinal cord due to a skull malformation. Basically, your brain is falling out of your head and being smashed by your spinal cord. This blocks the flow of CSF (cerebrospinal fluid) causing it to collect and cause cysts on the spine (syrinx) and pressure on the brain. THERE IS NO CURE. The only known treatment is Decompression Surgery (surgery all the way to the brainstem... removing part of the skull, part of C1 and possibly C2 of the spine to make more room for the brain). They may also remove portions of the tonsils of the brain, before covering the opening with a skin graft.
CHIARI CAN BE FATAL. The cerebellum controls more than just balance. It tells you when to breathe, how to swallow, your heart rate. It helps with thinking tasks and other cognitive functions. The nerve endings that are being damaged right now can be permanent, and can also cause paralysis.
There are only a handful of specialists in the country that treat Chiari and I have been blessed to find Dr. John Oro in CO. In October I traveled to CO to get his opinion and he feels it’s best for me to have brain decompression surgery. I am very lucky to have great insurance where the surgery will be covered. However this money will be used to help with any bills while I’m unable to work for 3-5 months, traveling to CO for the surgery (I will be in icu for several days and then a regular bed for a few days) then I will have to go back for a follow up, also this will help with any unexpected expenses that might come up while I’m out of work. I hate asking for help and will be forever grateful for anything I receive. I want to get back to my family my job and have my life back. At the bottom you will find some information about my condition, the surgery and my amazing surgeon.
Chairi information
https://youtu.be/50nI45Qn878
https://youtu.be/x3l2YMUuwfs
Dr. Oro
https://youtu.be/kRNcx3uSngs
Organizer
Kayla Morgan
Organizer
Surprise, AZ