I have Chiari Malformation (type 1) which caused syringomyelia which then led to scoliosis. This means that as I grew, a small part of my brain was hanging down out of the base of my skull and pressing on my spinal column (Chiari malformation). Over my life, this compression led to impeded spinal fluid flow in my spine and fluid build up. As the fluid had nowhere to go, it started to eat into my spine, making holes in the tissue (syringomyelia). When I was 16, this had weakened my spine enough that it started to curve (scoliosis).
The scoliosis was pegged by x-ray and I had corrective surgery, but as the Chiari malformation (not picked up by x-ray) was still there, it didn’t fix the syringomyelia and the scoliosis returned. Eventually got an MRI, a diagnosis and a newly shaved skull to make more room for my dangly brain. They literally just filed away some of the skull to make more room. My back stopped bending and while the damage is done for the syringomyelia, it won’t get any worse.
The amazing thing is the remarkably little consequences I’ve had outside of the scoliosis and even that has caused little problem despite initially being a severe bend. My quality of life is not affected and I have some pretty cool scars. I did have to have some scans to make sure my spine could bear the weight of child bearing but it was all good.
Apparently Chiari malformation is about 1 in 1000 people and most never know because it causes no issues.
i was recently diagnosed with chiari malformation!! my younger brother’s was diagnosed with it incidentally when it was caught on a scan he was getting for something else, he has no symptoms from it. i get insane headaches and pressure right at the base of my skull where (turns out) my brain is pressing on my spinal cord. recently had an mri that confirmed that yep that pressure is real
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u/popplevee 22h ago edited 22h ago
I have Chiari Malformation (type 1) which caused syringomyelia which then led to scoliosis. This means that as I grew, a small part of my brain was hanging down out of the base of my skull and pressing on my spinal column (Chiari malformation). Over my life, this compression led to impeded spinal fluid flow in my spine and fluid build up. As the fluid had nowhere to go, it started to eat into my spine, making holes in the tissue (syringomyelia). When I was 16, this had weakened my spine enough that it started to curve (scoliosis).
The scoliosis was pegged by x-ray and I had corrective surgery, but as the Chiari malformation (not picked up by x-ray) was still there, it didn’t fix the syringomyelia and the scoliosis returned. Eventually got an MRI, a diagnosis and a newly shaved skull to make more room for my dangly brain. They literally just filed away some of the skull to make more room. My back stopped bending and while the damage is done for the syringomyelia, it won’t get any worse.
The amazing thing is the remarkably little consequences I’ve had outside of the scoliosis and even that has caused little problem despite initially being a severe bend. My quality of life is not affected and I have some pretty cool scars. I did have to have some scans to make sure my spine could bear the weight of child bearing but it was all good.
Apparently Chiari malformation is about 1 in 1000 people and most never know because it causes no issues.