I'm seeing the Chiari specialist tomorrow to discuss my treatment plan and possible decompression surgery. What did you take with you to your appointment? Your symptoms list? Any specific questions? I appreciate your help.
A quick update to my prior post: https://www.reddit.com/r/chiari/s/3KbixiI5v3
With all of my ongoing symptoms, and even a new one or two, and after getting the Cine MRI CSF study that shows the following results: Chiari I malformation, right greater than left, with decreased CSF flow across the posterior foramen magnum, as expected. Phase contrast imaging demonstrates bidirectional flow through the anterior foramen magnum. There is bidirectional flow posteriorly beginning just below the foramen magnum, but no definite bidirectional flow over the cerebellar tonsils is seen.
I'm wondering if this now puts me in the probable category for surgery.
My case is currently under review by the specialist here in Seattle, and it sounds like they're holding an appointment slot for me on his first available day on August 31st.
Any thoughts, advice, or words of wisdom? 💜
I'm getting ready to see both the spinal neurosurgeon as well as the Chiari specialist for my recently confirmed 6 mm Chiari 1 malformation.
Regarding the neck, here is what my cervical MRI shows. I'm curious if anyone had similar imaging and what kind of symptoms you were experiencing. It's hard to tell what symptoms are stemming from the neck itself or in combination with the Chiari, but I'm highly symptomatic and almost feel like I'm getting the brush off from this clinic (neurology and neurosurgery).
2026: Multilevel degenerative change, which appears most significant at C6-C7, resulting in moderate spinal canal stenosis with flattening of the cord and moderate to severe bilateral foraminal narrowing. Posterior disc osteophyte complex. C5-6: Left eccentric posterior disc osteophyte complex. Mild spinal canal stenosis. Severe narrowing of the left lateral recess with slight flattening of the left ventral cord. Moderate to severe left-sided foraminal stenosis.
2024: C5-6: Severe disc degeneration with left posterolateral disc osteophyte complex results in mild central and moderate left subarticular narrowing with moderate flattening of the left hemicord. Severe left neural foraminal narrowing with impingement of the exiting left C6 nerve root secondary to endplate osteophytes. Moderate right neural foramina with potential impingement of the exiting right C6 nerve root secondary to uncovertebral osteophytes.
C6-7: Severe disc degeneration with left posterolateral disc osteophyte complex resulting in moderate spinal canal narrowing with mild flattening of the spinal cord. Moderate/severe bilateral neural foramina with impingement of the bilateral exiting C7 nerve roots secondary to uncovertebral osteophytes. Mild spinal canal narrowing from C2-3 to C4-5 secondary to disc degeneration and congenitally shortened pedicles. Note 7 mm right foraminal perineural cysts at C6-7 and C7-T1.
Did you have surgery, and if so, what drove you and your surgeon to make that decision? Was it successful?
I've seen so many people talk about having surgery, but still having symptoms, or struggling to be treated at all. Thank you for reading 💜
Hi there,
I'm getting ready to see both the spinal neurosurgeon and the Chiari specialist for my recently confirmed 6 mm Chiari 1 malformation.
Regarding the neck, here is what my cervical MRI shows. I'm curious if anyone had similar imaging and what kind of symptoms you were experiencing. It's hard to tell what symptoms are stemming from the neck itself or in combination with the Chiari.
Did you undergo any type of surgery, and if so, what was the procedure? Was it successful?
2026: Multilevel degenerative change, which appears most significant at C6-C7, resulting in moderate spinal canal stenosis with flattening of the cord and moderate to severe bilateral foraminal narrowing. Posterior disc osteophyte complex. C5-6: Left eccentric posterior disc osteophyte complex. Mild spinal canal stenosis. Severe narrowing of the left lateral recess with slight flattening of the left ventral cord. Moderate to severe left-sided foraminal stenosis.
2024: C5-6: Severe disc degeneration with left posterolateral disc osteophyte complex results in mild central and moderate left subarticular narrowing with moderate flattening of the left hemicord. Severe left neural foraminal narrowing with impingement of the exiting left C6 nerve root secondary to endplate osteophytes. Moderate right neural foramina with potential impingement of the exiting right C6 nerve root secondary to uncovertebral osteophytes.
C6-7: Severe disc degeneration with left posterolateral disc osteophyte complex resulting in moderate spinal canal narrowing with mild flattening of the spinal cord. Moderate/severe bilateral neural foramina with impingement of the bilateral exiting C7 nerve roots secondary to uncovertebral osteophytes. Mild spinal canal narrowing from C2-3 to C4-5 secondary to disc degeneration and congenitally shortened pedicles. Note 7 mm right foraminal perineural cysts at C6-7 and C7-T1.
Did you have surgery, and if so, what drove you and your surgeon to make that decision? I've seen so many people talk about having surgery, but still having symptoms, or struggling to be treated at all. Thank you for reading 💜
I was just diagnosed with a 6mm Chiari 1 malformation. I'm already looking at getting two opinions to be on the safe side. Neither neurosurgeon will see me without a Cine CSF study, though, so that referral has been made. I'm also very symptomatic: tingling from the top of my head downward, increasing headaches that wrap around from the back to the from and put pressure on my eye (mostly the left, and now taking migraine meds), noise and light sensitivity, nerve pain in my arms and hands, an intense and a bit painful surge of pressure in my head when I go from sitting to standing, dizziness, a sudden sensitivity to heat that I've never had (it makes things feel like they're pulsing), increased ringing on my left ear, and this last week I've struggled with finding the right words and also remembering how to get to somewhere I've been multiple times which is not like me. I also have voice fatigue and globus sensation, which I thought was due to my thyroidectomy in Jan 2025, but after multiple tests, injections into my vocal folds, and swallow studies, there is no structural issue that's causing it, and they have no idea why I'm still experiencing it after this long.
Did you have any similar symptoms? Did you have surgery, and if so, what drove you and your surgeon to make that decision? I've seen so many people talk about having surgery, but still having symptoms, or struggling to be treated at all.
Thank you for reading 💜
I was just diagnosed with a 6mm Chiari 1 malformation. I'm already looking at getting two opinions to be on the safe side. Neither neurosurgeon will see me without a Cine CSF study, though, so that referral has been made. I'm also very symptomatic: tingling from the top of my head downward, increasing headaches that wrap around from the back to the from and put pressure on my eye (mostly the left, and now taking migraine meds), noise and light sensitivity, nerve pain in my arms and hands, an intense and a bit painful surge of pressure in my head when I go from sitting to standing, dizziness, a sudden sensitivity to heat that I've never had (it makes things feel like they're pulsing), increased ringing on my left ear, and this last week I've struggled with finding the right words and also remembering how to get to somewhere I've been multiple times which is not like me. I also have voice fatigue and globus sensation, which I thought was due to my thyroidectomy in Jan 2025, but after multiple tests, injections into my vocal folds, and swallow studies, there is no structural issue that's causing it, and they have no idea why I'm still experiencing it after this long.
Did you have any similar symptoms? Did you have surgery, and if so, what drove you and your surgeon to make that decision? I've seen so many people talk about having surgery, but still having symptoms, or struggling to be treated at all.
Thank you for reading 💜
Hi all,
I had a right SI joint injection a little over two weeks ago. The day after the injection, I started noticing a weird numbness and tingling in my anal and vaginal area, as well as tingling from the waist to the feet if I sit or lie down, more pain in my right hip (the reason for the injection ), and worsening bilateral groin pain into the top of the thigh. I can barely feel it when I pee. I had a CT, but it was pretty unremarkable. I'm now scheduled for an MR Neurogram with/without contrast, but I can't get in until June 3rd, even though it's marked as urgent. If I'm sitting or lying down and I lean forward, the numbness and tingling spread and wrap around from the anus to the clitoris and pubic area, and gets stronger down both legs into my feet. I feel like I'm the only one concerned about what is happening to me. Do I wait for the scan? Do I go to the ER? I'm afraid that if I go to the ER, they'll just tell me to wait for the scan and send me home. Have you had this happen and if so, what did you do? Thank you for reading.
