ACM 1- Chronic severe daily headaches
 

After many years of headaches and other neuro sx, my teenage daughter was diagnosed w ACM 1 & had a decompression in 2/09 done by an experienced pediatric neurosurgeon. She did well for 6 mo, but then developed severe headaches & hydrocephalus, ending up with a LP shunt. 4 shunt revisions later, she still experiences severe chronic daily headaches. CSF is a bit high during shunt tap, but not high enough to explain the severity of her headaches. We've tried many different meds and finally settled on 10mg Oxycodone every 4 hrs which provides makes the headaches endurable most of the time. Unfortunately she is allergic to Diamox which would be helpful in reducing CSF volume. MRI shows no recurrent ACM (I've actually reviewed the MRI and the report w the neurosurgeon).

Is there anyone else out there that has gone through this? I'd like to get her off of the narcotics, but have no idea what other meds or treatments to ask about...

Can you get this poor girl to a GOOD neuro surgeon at a GOOD teaching hospital,, she shouldnt have to suffer like this,, itslike these doctors are just messing around with her,, there not the ones suffering,,