pseudotumor cerebri

[perryprophet]

my 14 yr. old son was diagnosed with pseudotumor cerebri 2 months ago.  He had 7 lumbar punctures and started diamox therepy quickly after diagnosis.  3/20/08, he had placement of an LP shunt.  He has improved to include regaining some of his vision.  he still has a long way to go.  My concern now is how do we know if his pressures are becoming too low.  It seems every complaint he has, we are torn if this is just him being overly tired or something else.  we were told our son had a virus when this all started, and now he has a shunt in his body.  i'm so afraid we will miss something and cause him more suffering.  Is there a list somewhere that will help us understand what to be concerned about and whats just to be expected at juncture?  any help I can get I would be so grateful!

[nellieb72]

My daughter was also dignosis with pseudotumor cerebri, she is 12 years old. She had a LP and she does not need the shunt she is taking medication. The headaches seem not to go away and they say this came about when she had Viro Meningitis. She is still seeing the doctors because she can not stand the light so she spends her time in the dark. She is now taking Home Schooling because the noise gives her a headache from everyone speaking at once. She has had 32 spine taps and her pressure was counted to be 46, which they say is very high. According to what I have been reading these punctures are causing herniated disc to accur. Now I have to wait till they re-evaluate her and see if changing her meds will help. I feel your pain. Amagin it's hard for us to endure a migraine, these are children. I will post my encounters with the doctors as I receive there reports. She has had this now for only 3 weeks but the headaches are not getting better at all.
Thanks

[Dippity]

My son is 14 and has had pseudotumor for 3 1/2 years now.  I think with a shunt, one should look for a low pressure (spinal) headache, which would be horrible.  My son does not have a shunt but was put in ICU for a temp shunt for four days to see if a perm shunt would help him.  It didn't.  He got a horrible low pressure headache just sitting up after they removed it.  

His doctors are trying a new procedure...an LP every 2-3 weeks to see if they can permanently reduce his ICP.  They've been successful with one other child.  I'm very hopeful that my son will be cured, although the procedures are not without risk.  I'll let you know how it's going.

I hope and pray your son will be able to have a normal life.  Bless his heart!

[TJRasta]

Something doesnt sound right here.  It sounds more like they screwed up the drain test and took out way too much CSF and therefore he ended up with a low pressure HA.  I went thru a drain test and ended up with a LP HA too and a shunt worked!

A LP every 2-3 weeks is insane.  How do they think that is going to lead to a cure?

TJ