6 year old w/ positional Chiari ??

[Guest guest]

Hello All- Happy Thanksgiving

My name is and I have Chiari. I was decompressed and had TC

surgery. My 6 year old son has been experiencing headaches that seem

to come after activity, worsens/starts with coughing, sometimes is

relieved by laying down, dizziness, a choking sensation (usually when

he has his headaches- and only at night when he sleeps), knees

buckling, and frequent urination. Other than these symptoms, Sammy

is a very happy active little boy who loves his trampoline, and doing

cheer leading type of exercises... He is a happy burst of energy

until his headaches start. His pediatrician ordered a CT SCAN and it

said " The cerebellar tonsils are seen in the foramen magnum, which

may be related to the angle of acquistion " . can Chairi be positional?

What are the chances of it being positional with my Chairi history?

How will this effect him? Will he have the same problems I had? I

wasn't properly diagnosed until I was in my late 20's.

Sammy had MRI's done of his head and complete spine yesterday. They

were a bit concerned when it took quite a bit of Fentanly, versed and

pentobarbital to sedate him. (I have been told that Chiarians do need

more sedation than the average patient, but I thought that was due to

all the surgeries and procedures we go through.Am I just too

worried?.....I've looked the images from the CD,and although I'm not

a neuro-radiologist who specializes in reading MRI's with Chiari..it

looks like those tonsils aren't where they should be. It also looks

like my baby does't have much room back there. I'm nervous, and

trying to be patient. But how can I not worry??

His Dad's side of the family does expereince severe migraines. But

these do not seem like the run of the mill migraine headache. I'm

hopeful, but scared. Yesterday was the first time Sammy ever threw

up. (All that sedation caught up with him)

Sammy was also very sick as an infant..he had severe acid reflux (the

GI doc said it was the " adult type " since he didn't have projectile

vomiting like most babies did. He was diagnosed by pneuomogram. He

also had tracheal malasia. He was on an Apena montitor. He would do a

strange " positioning " with his head and neck as a baby..but he

doesn't do it anymore.He's been fine since he was about three. I

thought the positioning was from the acid reflux? His GI doc was

concerned was concerned about him when Sammy would stop in his tracks

and grab his head as if in pain. He made all his milestones either

early or on time. I don't know what else to ask or say. I'm just very

worried and don't know if I should be?

Any information would greatly be appreicated.

Happy Thanksgiving,