Hi all - my 9yo daughter has 10mm/11mm chiari, first decomp's Oct 2010, repairative surgery (removal of scar tissue in spinal cord) 11/2014, for the last 8 or 9 days has been experiencing vertigo, temp control issues, arm and leg pain on right side only. We've discussed w/ our neurosurgeon's nurse practitioner (her daughter has chiari as well, so she's very much familiar w/ this). We are not sure if what she has is caused because a severe cold she had 2 weeks ago (my sons both had it, and she caught it), or if she is, for first time since 2010, experiencing chiari symptoms.
We've been, as per doctor's orders, giving her tylenol then advil every 3-4 hours for the last 2 days. It's actually been 5 days but she was vomiting as well until 2 days ago. She seemed better yesterday, but today she was again w/ vertigo and wasn't getting off the couch for anything, when she did (to get a kleenex that my son had moved to the table), she was very unsteady on her feet and nearly fell into the kitchen chair. But for themost part this afternoon she was doing really well. After she took her Advil dose this evening her head began to hurt again, and the hot/cold temp issues again. She pretty much fell asleep after that, an hour earlier than normal.
Some people in the forums here have discussed what meds they take... others have discussed homeopathic route. I"d so appreciate to hear back from some of you how you handle treating your symptom flare-ups? One woman (jiggler23? i believe that was her name) was discussing oils she uses that help immensely. Can anyone give me any info on whether they take B6, B12, Magnesium, or use oils? Or do you mostly rely on Rx's. Am sure that everyone's different, and symptoms all differ such that we all have to find what works best for us... just wondering bec we've never had to deal w/ symptoms before and now going on 9 days of this, we are exhausted and hoping for solutions... Doc's office says she can start Topamax (no, from what i'm reading, that drug is worse than the symptoms!)... we have valium for her here, but haven't given it to her bec i'm afraid it will only mask her dizzy symptoms? How do you all take care ofy your symptoms (sorry, tried to make ths short! :) THANK YOU for any input!!