Ok so I am in a weird position. I have a pacemaker defibrillator for a heart condition which means no MRIs for me. Has anyone ever gotten and solid information off of any other testing. I feel like I may just be out of luck and stuck because of this. I know I have a CM they see it on the cat scan but I dont know what else they are going to be able to do to get a good grasp on the size and what else is may be causing an issue with.
My surgeon could see lack of room, lack of csf flow in several places, a seroma from a previous surgery, and the deformation of my spinal cord because of the csf leak I have…on a ct. Have you seen your scans? Do you have a copy of them & the report?
If they can see that you have ACM and they are acknowledging it because of the the ct, I would not stress. If you are symptomatic, plus verifiable ct report - a Chiari Specialist won’t ignore it. Because honestly, “size doesn’t matter”, symptoms do and severity of those symptoms and how long you have had them. I’m not sure if this helps. These are what I was told by my surgeon.
(Another interesting tidbit: the herniation on a scan will sometimes be larger once they get in there vs. the measurement from the scan. For example, mine was measuring 16-18mm {depending on which scan} and actually was 20mm when he got in there.)
I am going to try and see a specialist. I am just frustrated with it right now. My regular neuro has me on medication that seems to be making these symptoms worse.. I feel terrible and I am trying my hardest to work 40 hours a week ( most weeks more due to mandatory OT and an ex who isn't paying support ), be a good mom and a good GF to a BF who has never really been sick a day in his life.