Ongoing disabling headaches despite VP shunt placement

[DCFairbank]

I am a 38 year-old female with history of a glioma diagnosed 20 years ago.  Since that time, I have had several recurrences that have been treated with surgical resections and/or radiation.  Thankfully, I was able to graduate from medical school and finish my residency, however while on call and sleep-deprived during residency in 1998, I had my first grand-mal seizure and seizures have been a problem since then.  Headaches have also been an ongoing problem and I was diagnosed with hydrocephalus secondary to scar tissue in 2000.  I had hoped that the shunt would alleviate my headaches, but it has not done so.  I am currently on disability for poorly controlled seizures and severe headaches.  My MRI shows that I have slit ventricles but when I just saw my neurosurgeon, he said that he does not feel this is related to my headaches and he believes that nothing needs to be done.  The problem for me is that I am praying that I can go back to work as soon as possible but the headaches are severe, disrupt my sleep and sleep-deprivation causes me to have seizures.  I mentioned the fact that my shunt has a one-way valve instead of a newer bidirectional, programmable valve but my surgeon dismissed this without any explanation.  Do you have any ideas of anything that can be done other than just leaving everything alone?  I'm really miserable and willing to consider anything.  Thanks!

[Cath278]

Hi. I have a different illness to you (IIH/PTC) with a VP shunt but with the same results Im afraid. Within 2-3 weeks after surgery, my headaches returned.Plus a lot of other symptoms.My neurosurgeon was to put in a second Vp shunt to help with the pressure but I found out last week that my ventricles have closed. So no where to put the shunt. I have been sent home and told to get help with the pain.Thats it? It seems so.
You need to find out if your shunt is working properly.Mine is but releases very slowly so the pressure builds up and  the headaches start.I think I have the same type one as you. Would they consider replacing the present shunt for a more up to date one? or  is surgery out now because of the ventricles?
You must talk to your doc about pain relief.Its crazy to be in such pain and if you get a handle on the pain, sleep may come. I m so sorry to hear that you are suffering this way.Wishing you the best, Cath278