I am just replying to show support for your daughter and for you. Watching her experience her level of pain is difficult for you. I will put the two of you in my prayers for relief of her pain, strength in your coping, and success in finding answers to the reasons for the pain.
Oh ok...I understand more what was going on....I asked about positional changes since a leak was mentioned....must be a slow leak since being upright does not make her worse.....
I hope you get more answers from the Drs soon and she is back on the road to mend....
She had a duraplasty the first surgery removed part of c1 an coagulated the cerebellum tonsils, her syrinx was in the center of the brain stem.... The syrinx resolved but the right cerebellum tonsil laid right on the brain sten so this surgery was to clip it cauterize it.... Right now the fluid is in a pocket at the base of the skull...... Pain dorsnt seem to be affected by position. She has numbness on the right side but is in occupational therapy...
Hi and welcome to the Chiari forum.
I did reply to this last night....not sure why it dis not post.....
As the above poster mentioned we have had a few members that had a CSF leak...some were due to a patch failure...some could be described as a rejection of the patch while others were a patch failure due to manufacturing...
Does she have issues with change in position? Worse symptoms with head pains when upright?
What type of patch was used and were ALL related conditions ruled out b4 surgery....and why was this 2nd surgery required?
Just bumping this to the top of the list. Hopefully you will get answer. I have heard of others that have had a csf leak after surgery, but I can not remember specifically what they said or how it was treated. Maybe you can do a search within this forum for csf leak and see what all the discussions say.
Good luck. I hope she starts feeling better. :)