My son has struggled with breathing and swallowing issues since birth. He’s now 18mo, after A LOT of pushing I got doctors to do a sleep study when he turned one, that came back extremely severe for central and obstructing sleep apnea. Got a referral to ENT, they couldn’t see anything, so they referred to Neuro. Neuro had a swallow study done (while we waited for a sedated MRI) and he’s aspirating everything and has to be on nectar consistency.
Had the MRI today and the results have scared me to death. I’m still waiting to hear back from Neuro to translate most of this. But what I’ve found through Google is scary.
I’m not even sure what I’m looking for at this point. Directions on how to best advocate for him? Best doctors?
Currently his symptoms are:
Choking Swallowing Issues
Possibly Balance Issues/excessive falling
His test results say this:
“The cerebellar tonsils are pointed inferiorly, compress the CSF space at the foramen magnum with mass effect on the brainstem and upper cervical spinal cord, and extend at least 19 - 20 mm below the foramen magnum. The obex is located above the foramen magnum. The cervical spinal cord is visualized through the conus medullaris on the sagittal large field of view T2 sequence, without a large syrinx identified.”
In a different spot it says: “Chiari I deformity with crowding at the foramen magnum and compression of the upper cervical spinal cord, but without