I can't tell you how lucky I feel to have come across this website. I was diagnosed with Chiari Malformation 19 mm with "arachnoid cystt" sitting on the right cerebellar tonsil - I was told. I also had Ehlers-Danlos syndrome, retroflexed odontoid, craniocervical instability - just complicated. So went to world renowned complex Chiari expert in NY - had a posterior fossa decompression, occipital to c2 & c3 fusion and 5 months later had a tethered cord release. Okay, two MRI's later & this "arachnoid cyst" is STILL there. My NS (whom I LOVE)and I are at this juncture where we aren't quite sure what this is. He is diagnosing me at syringobulbia (which means the cyst/syrinx) is in the brainstem vs. what I'm reading on here - the cyst is outside putting pressure on the brainstem? I have all my MRI's and I'm (and a good friend) of mine (along with my NS who is going to contact some colleagues) are trying to figure out exactly what's going on. But to find out that the possibly of I actually may have an arachnoid cyst (the inital diagnosis) vs syringobulbia is ironic. Though both scary the crap out of me. I'm definitely going to reach out to Dr. Speltzer in AZ & read your book. Thank you!
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I can't tell you how lucky I feel to have come across this website. I was diagnosed with Chiari Malformation 19 mm with "arachnoid cystt" sitting on the right cerebellar tonsil - I was told. I also had Ehlers-Danlos syndrome, retroflexed odontoid, craniocervical instability - just complicated. So went to world renowned complex Chiari expert in NY - had a posterior fossa decompression, occipital to c2 & c3 fusion and 5 months later had a tethered cord release. Okay, two MRI's later & this "arachnoid cyst" is STILL there. My NS (whom I LOVE)and I are at this juncture where we aren't quite sure what this is. He is diagnosing me at syringobulbia (which means the cyst/syrinx) is in the brainstem vs. what I'm reading on here - the cyst is outside putting pressure on the brainstem? I have all my MRI's and I'm (and a good friend) of mine (along with my NS who is going to contact some colleagues) are trying to figure out exactly what's going on. But to find out that the possibly of I actually may have an arachnoid cyst (the inital diagnosis) vs syringobulbia is ironic. Though both scary the crap out of me. I'm definitely going to reach out to Dr. Speltzer in AZ & read your book. Thank you!
February 17, 2015 - 10:28pmThis Comment
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