Vision & Vertical Nystagamus

[Guest guest]

Hi all, I was wondering if I could get some advice.

Alaina had her detethering and removal of a lumbar catheter in early

March. She has had a hard time recovering from this one. She has

had increasing headaches since and complains almost of nausea &

dizziness almost daily. She is back up on her toes to walk. She has

also started complaining of her vision going blurry.

I am trying not to assume it is her VP shunt, etc and had the school

nurse check her vision. Her vision had deteriorated quickly when we

were dealing with the shunt issues before. It had seemed to level

out and we were hoping we were over the hump.

Unfortunatly it doesn't seem that we are. I brought her to the eye

doc and within months, she is seeing 20/70 in one eye and 20/100 in

the other with her glasses on. They also said she has Vertical

nystagamus and showed me that when she looks up, her eyes bounce up

and down. That is new.

I wonder how normal this is with kids that have been decompressed,

detethered and shunted? Part of me wants to email the neurosurgeon.

Could a non-functioning shunt cause this? Is this something

permanant? I hate to have her vision worsen again, she is extremely

near sighted and her prescription just took another big jump. They

couldn't correct her to 20/20 this time.

Thanks,

Dawn

Mom to Alaina, ACM (decompressed) tethered cord (detethered x3), VP

shunt, panhypopituitary, etc