increasing intracranial volume

[kaymom]

Have you ever heard of a child getting a spiral osteotomy in order to increase intracranial volume?
My child has chiari, psuedotumor, and optic nerve swelling.  Her shunt is not flowing and the reason seems to be that the venticles are so small that it is collapsing the tube.  Her ICP was averaging at 14 during the day and 25 at night.  She had a peak at 37 for nine minutes.  Her blind spots are getting bigger.
Her psuedotumor has an unknown cause.  She already had optic nerve sheath fenestration and it didn't work.  
My options are: to put another v/p shunt on the other side, or to have a multiple-revolution spiral osteotomy and give her more room in her head.  OR to do nothing and just wait and see what happens.  I am torn between doing the osteotomy and just doing nothing.  I think? that the older she gets the more difficult it will be to have the surgery, because of the way the bones grow and how much your skin will stretch.  She is 12.
Anyway, i know, its a BRAIN TEASER, but what do you think???
kaymom

[kaymom]

You have suggested that i get another opinion.  I live in san antonio, texas.  Currently we are with the Santa rosa hospital and the university of  texas health science center.  What other places can anyone recommend for us?
She has been with her neurologist for five years and with her nuero-opthamologist for seven years.  I am sure it will be quite overwelming, given her medical history, for anyone else to give a second opinion.  I have actually tried to get a second opinion about her optic nerve swelling twice before and both times the doctors have said that the doctor she has is a very well educated man and they tell me that i should just go back to him.  After that i gave up on getting a second opinion.  I hear things like, "we dont know what to tell you" and "she is a very difficult case for any doctor".  
(sometimes i think that if i would have went to college to be a doctor, i would have saved myself some money)
kaymom

[CCF-Neuro-M.D.-JT]

Your daughter's case is very complex as both the conventional and invasional procedures for pseudotumor have not provided significant improvement in her symptoms. The problem with waiting and doing nothing is the progessive nature of her vision loss due to the constant pressure by the CSF on her optic nerves. You already point out that her blind spots are getting bigger. If things continue as they are, the vision will also continue to get worse and the damage may be irreversible. Osteotomy is certainly not a standard procedure we do for refractory pseudotumor. Before subjecting her to that kind of procedure which has its own side effect profile (as all procedures do), get a second opinion by a pediatric neurosurgeon at a major academic center and explore all of the available options. As her vision is at risk, I would suggest seeking further evaluation sooner rather than later. Best of luck to you and your daughter.