6 weeks 1 day post surgery update

Hi everyone,

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.

Blurry/Double Vision:

Still has it and seems to happen at least three to four times a week.

Neck Bump:

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.

Back Pain:

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.

Hello OhMy! I feel so bad that Abbey is going through all this pain. It shouldn't matter if the headaches are from Chiari or not, she is hurting! How long is the wait to get in to see the NL? It is great that she is in counseling for everything that is and has been going on.

I'm keeping you both in my thoughts. Let us know what the NL says.


The wait is not long (compared to what others have to wait) for the Neuro, two weeks.

It is very upsetting especially when I keep getting different 'opinions' from different sources. I really wanted to avoid Seattle but depending on what Dr. M says we might be heading there for pain management and follow-up care.

I am so sorry she is still feeling so bad,it seems that we are treated differently than most patients.Is it because our Dr.s are over whelmed with us and not understanding what this is like? They can’t seem to put their mind around the fact that a few specialist have started to figure out some of this conditions dyanamics.The reg medical community will avoid uS and the sad thing is the chiari patients get left with no where to turn.If only they could live inside our bodies for a while then they could know.You have to get a specialist in the chiari field or there seems to be no help outside of that.I tell everyone that the herniation thing is not important my chiari was considered borderline but was devastating on my life so many yrs.lost 28yrs.please be sure she has a specialist.

I'm sorry she is feeling poorly. It does take a lot of time for things to straighten out from the years of damage and doctors don't seem to have much of a handle on the recovery process.

As to the neck bump...I experienced an extremely sore spot to the right of my incision and it turned out to be my neck muscle in spasm. I use Arnica gel on the area, take Epsom salt baths, rest as much as I can, and use muscle relaxers if it gets real bad. Hope this helps!

We are getting ready to head out the door for an appointment with the NS.

I'll update when we get back.