Just wanted to get on here and give you all an update.
I wish I could say that the fabulous recovery that Abbey had in the beginning has continued but it has not.
Abbey still has daily headaches with about three headaches a week that require her to have little to no input (i.e. light/sound/smell). Some of these headaches Abbey says are her 'normal' headaches but the majority of them are not. Despite what the nurse practitioner for Dr. M says Abbey CAN tell the difference between a Chiari headache and a migraine! So far she has to just suffer through these headaches as her ped is not comfortable giving her pain medication for them, the NP says they are not because of Chiari and will not give her pain medication for it and we are on the wait list to get into a neurologist, who hopefully will give her some type of pain medication for headache relief. Over the counter medication does nothing for these headaches and the Imitrex (for miagraines) only makes them tolerable sometimes. The ped did offer to refer her to Seattle Children's for biofeedback training to try and help with the headaches. We might take that offer later but for now the logistics of trying to do that is not something I can do.
She has lost 15 pounds since surgery due to severe nausea. She is still on medication for it but it does not seem to be working. Again she seems to just have to suffer through it.
Her handwriting is different. I know it seems like a stupid compliant but her writing is not as 'pretty' as it was before. It is more sloppy, almost like she cannot grip the pencil the same as before.
Still has it and seems to happen at least three to four times a week.
Abbey swears there is a bump on the side of her neck by the incision but no one (including me) can feel it. She says it is very painful to the touch and causes her a lot of neck pain. Ice packs are the only thing that seems to make it tolerable. We ended up in the ER due to this (and a severe headache). She was given a shot of Toradol and the pain was manageable. Had a follow up with her Ped who said that her neuro exam showed that Abbey is still adjusting to the CSF levels in her head.
Every single day her back hurts. Some days it is just 'there'. While other days the pain is very noticeable and hurts her.
Due to all of the pain depression has reared it's ugly head. She's in counseling to help her deal with everything that is going on. At this time she is not on any medications for it.
I'm pissed off that no one seems to be doing anything for the pain! It's a case of she hurts, they say it's not the Chiari or not something that they can deal with and refer her out. In the meantime Abbey just hurts with little to no relief.