multiple symptoms

[beentheredonethat2x]

My daughter had a posterior fossa decompression on Aug. 14th for a Chiari I malformation. She has been dizzy with a low-grade fever ever since 99.6-101). She has a rapid pulse rate (over 140) and orthostatic hypotension, but echocardiogram and EKG were fine. She also has small red blood cells and negative blood cultures, electrolytes fine and white blood cells fine, constant headache at the front and top of her head. She also is routinely getting large painful ulcerations in her mouth and on her lips. She has a large puffy fluid filled bump at the incision site with large painful lymph nodes up her neck and the back of her head. She feels terrible! We don't know where to turn to help her feel better, but are going back to the neurosurgeon in two days. Maybe he can help with the fluid filled bump. We have heard mention of possible anemia, but noone has recommended any sort of treatment. She is so sick that she's rarely able to make it to school. Help! Any suggestions would be appreciated. We've been to the neurosurgeon, pediatric neurologist, and family practice doc since the surgery and noone knows what's wrong with my daughter.

[chadry]

I am suggesting the same thing There are many people there who have had the surgery and could possibly shed some light on this.
There are really great caring people on the Chiari forum. I go there all the time. My daughter has this condition but has not had the surgery yet.
Chadry

[toolmaker]

Try posting this in the Chiari section I am sure you'll get some comments.