My 11 yr old son has Central Auditory Processing Disorder, GED and Short term memory issues. He also has Post Concussion Syndrome although he is believe to be recovered. (3 mild concussions in 4 months from falling lead to this) The family history is I have Classic Ehlers Danlos Syndrome, My oldest son has Chiari, EDS/Marfanoid Habitus, Retroflexted Odontoid, POTS, right single coronary artery, Pin hole VSD and a few other issues. My youngest son has HF autism, oral dyspraxia. My son in question does not suffer from head aches thankfully but does have some joint instability so I would assume some level of CTD is there even if mild. He has been on restrictions for almost a year. Docs arent sure whether to lift some restrictions or leave them. We assume he is just more volnerable to brain injury. We will be seeing the NS in August.
My questions is, what is your opinion of the basilar invagination dx he got?
One Report says:
Clivoaxial angle 118 degrees. Basion lies anterior to the odontoid and the Grabb Oakes Measurement is 12mm constituting 3mm of basilar invagintion. Substantial kyphosis of the cervicomedullary junction of the neuraxis. Tonsils low lying but not chiari 1. More testing needed, upright flex /ext have been ordered.
The other report says: Clivoaxial 118 degrees, slight craniovertebral angulation in the region of the foramina magnum, some impression on the cord, Basilar invagination within normal limits although upper limit of norm.
So my questions are, does he have Basilar Invagination or not? If yes, is it because he is symptomatic? We expect possible changes in upright if he has cranial settling.
I've read online that above 3mm is BI, so what if it is AT 3mm? (Or is he 12mm?) Does it depend on symptoms?
If he does have BI, how life threatening is it? Restrictions? He is not in any sports now but wondering if he will ever be able to play. Is this progressive? What is the surgery and how dangerous is it? My oldest had decompression and fusion. But he doesnt have BI.
I would love any input you can share :) Thank you so very much!! Robin
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