Many people have been asking if a Chiari Malformation is a type of growth and if my surgery removed all of my "tumor." While the specifics can be complicated, I'll try to explain a Chiari Malformation and my associated conditions in the easiest terms as I can.
None of which, thankfully, involve a tumor of any kind.
Apparently, I was born with a condition known as a tethered spinal cord. It is closely related to spina bifida but due to the outward appearance of the spine appearing to be "normal," it is not usually picked up on until much later in life when symptoms start appearing. Your spinal cord is supposed to be free-flowing in spinal fluid; when your spinal cord is tethered, your cord becomes adhered to your spine itself, causing the spinal cord to pull down on the brainstem. (In fact when the surgeons fixed my tethered spinal cord in June, they determined that my spinal cord was pulling my brainstem down nearly two and a half inches.)
This downward pulling of the spinal cord on the brainstem causes stress on the brain as well. In addition, I have a connective tissue disorder known as Ehlers-Danlos Syndrome in which my ligaments are hypermobile (they're not strong enough) so in addition to the tethered cord pulling my brainstem downward, I have also experienced "cranial settling" in which my skull has slipped too far downward on my spine. This, in turn, has resulted in my odontoid bone pressing on my brainstem as well.
All these factors together have contributed to my Chiari (pronounced kee-ah-ree) Malformation which
http://www.conquerchiari.org/ defines as: "a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms." My brain is sinking too far downward into the spinal cord area, causing pressure on the brain and crowding out precious spinal fluid from protecting the rear and top of my brain as well.
My surgery in June detethered my spinal cord and my surgery on August 27 opened up part of my skull (allowing more room not only for the brain but also for the spinal fluid to pass through.) In addition, my surgeons fused my neck from the occiput down to C5. In doing so, they're hopeful that my skull is now in its "correct" position and will stop descending downward.
I'll have to go back to NYC in three to six months for a follow up. I'm still in a lot of pain right now but I'm hopeful that by that time, I'll be feeling MUCH better. While I'm no doctor, I hope I've explained everything a little bit better. The links over on the top right are also great sources for Chiari information as well. Thanks for checking on me!
Apparently, I was born with a condition known as a tethered spinal cord. It is closely related to spina bifida but due to the outward appearance of the spine appearing to be "normal," it is not usually picked up on until much later in life when symptoms start appearing. Your spinal cord is supposed to be free-flowing in spinal fluid; when your spinal cord is tethered, your cord becomes adhered to your spine itself, causing the spinal cord to pull down on the brainstem. (In fact when the surgeons fixed my tethered spinal cord in June, they determined that my spinal cord was pulling my brainstem down nearly two and a half inches.)
This downward pulling of the spinal cord on the brainstem causes stress on the brain as well. In addition, I have a connective tissue disorder known as Ehlers-Danlos Syndrome in which my ligaments are hypermobile (they're not strong enough) so in addition to the tethered cord pulling my brainstem downward, I have also experienced "cranial settling" in which my skull has slipped too far downward on my spine. This, in turn, has resulted in my odontoid bone pressing on my brainstem as well.
All these factors together have contributed to my Chiari (pronounced kee-ah-ree) Malformation which http://www.conquerchiari.org/ defines as: "a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms." My brain is sinking too far downward into the spinal cord area, causing pressure on the brain and crowding out precious spinal fluid from protecting the rear and top of my brain as well.
My surgery in June detethered my spinal cord and my surgery on August 27 opened up part of my skull (allowing more room not only for the brain but also for the spinal fluid to pass through.) In addition, my surgeons fused my neck from the occiput down to C5. In doing so, they're hopeful that my skull is now in its "correct" position and will stop descending downward.
I'll have to go back to NYC in three to six months for a follow up. I'm still in a lot of pain right now but I'm hopeful that by that time, I'll be feeling MUCH better. While I'm no doctor, I hope I've explained everything a little bit better. The links over on the top right are also great sources for Chiari information as well. Thanks for checking on me!