HELP-Pseudotumor cerebri and chiari malformation complications

My sister was diagnosed with pseudotumor cerebri in 2007 and had 6 surgeries to address elevated CSF pressure (1 LP shunt + 3 revisions, 1 VP shunt + 1 revision).  She was legally blind for a month, but fortunately her vision returned after the second VP shunt.  However, she continued to have debilitating headaches and did not receive adequate treatment until recently when we found a neurosurgeon who determined that the LP shunt should be removed because it was over-draining and had caused an acquired Chiari malformation (which she did not have in 2007).  The LP shunt was removed last week, but now the incision is leaking CSF.  She is in the hospital now- extra stitches did not stop the leak.  She had this problem with one of the earlier LP shunt surgeries- blood patches did not work and leaks continued until new shunt was placed.  Also, visual loss is now returning, so I think VP shunt alone is not draining enough or not working (although we agree that VP + LP shunts together drained too much CSF).  Does anyone know of any other procedures to stop the CSF leak?  Is it possible that the increased pressure is contributing to the leak and adjusting/replacing the VP shunt could help with the lumbar leak?  A hospital resident suggested doing nothing for 24-48 hours, but I don't see how that could fix the leak- it seems to be leaking too much to heal on its own and continues to leak with even the slightest movement.  We are desperate and worried about my sister- does anyone have any advice?

[selmaS]

Hi and welcome to the Chiari forum.

Ur sister is lucky to have a sister to act as her advocate.....

From what u mention it sounds like the problem could be from the aquired chiari ....it could be blocking the natural flow of CSF causing it to back up......those of us with chiari have that issue.

As for the leak....if a blood patch doesn't work, the only thing I have heard is surgery...they have to go in and seal it very tightly with stitches......possibly glue as well....

Did they mention how large her chiari herniation is?

And what did her NS suggest?....well lying flat and taking in caffine can allow the leak to seal on it's own.....this is done alot ....in fact, I had one seal by itself after having a leak from a epidural .....it took 5 days of agony.

Ask more questions about the aquired chiari.

"selma"

"selma"