daily headaches

[Terry2327]

my 19yo daughter had decompression sx for a chiari in may '09 and has continued to have bilateral frontal HAs daily.  she has had multiple MRIs since the sx (including a stand-up MRI) and they are normal.  we have tried most all of the mainstream meds (narcotic and preventative) except for a Ca channel blocker with no relief.  her dr. is trying cyproheptadine now.  the only thing that gives her true relief is Nubain injections.  Stadol and Talwin NX do not work.  Oddly, the Nubain generally lasts close to 24 hrs, much longer than the half-life (5 hrs), and she does well with a smaller than recommended dose (5-6cc vs 10-20cc for her weight).  rebound HA from Nubain has been ruled out -- she was off Nubain for 14 days while in the hospital this year and she recently went 48hrs without it.  both times she had a continuous, non-stop HA.  she started Lexapro about the time her HAs started (prior to the sx), but none of the doctors seems to think that is significant?  her HAs usually start about mid afternoon, but she has observed that if she does not eat ANYTHING her HAs start much later.  she does not have any stomach distress, however she has diarrhea at the onset of most all of her HAs.  understandably, we are not comfortable with Nubain every 24hrs.  any suggestions?

[pamk5]

Hello! I agree with Stacey that she needs a flow study.  But I also wanted to ask if the doctor directing her care is a Chiari specialist?  If not and she is still having this much pain I would advise getting her scans to a specialist to see if they have anything to add.  There are alot of things that can be going on post surgery.  Some of the things that come to mind is inadequate decompression.  Did they open the dura? If so what type of patch does she have.  She could be rejecting it if it is of foreign material.  Another thing too is brain slump that can happen if too much bone is removed.  I would really recommend getting her scans to a specialist.  What we all have learned is you rarely rely on one opinion with this illness.  There is a difference between a doc who occasionally sees CM patients and one who focuses their practice on this condition.  

I am with Stacey on I dont have any idea why not eating would delay her headache.  I have never really heard of this before.  Best of luck to you both.  I hope you find relief for your DD.  

Pam  

[Spaceystac]

Hi, thanks for posting! Sorry to hear you two are going through so much, even after a decompression surgery. Has she had a csf flow study? That can show if there is a blockage anywhere that could be from scaring or even not enough decompression from the initial surgery maybe? She is 19, so she is likely to be growing a bit still, I wonder if this can contribute to her headaches, some people that have Chiari dont become symptomatic until they are in there 20's when they have finished growing and there is a theory that some peoples skulls stop growing before their brains, leaving not enough room. I think a flow study would really be helpful. If the meds arnt really helping anymore, then there must be some cause for her daily headaches.  They can only mask the pain with meds for so long, they should really be looking into what is causing the headaches after a decompression surgery.

It is strange how her head hurts when she eats but it may be due to all the chewing and swallowing. A lot of your mouth and jaw muscles are innervated through the same zone, maybe the action of eating it inflaming the herniation? I wish I knew more to help you two. Good luck, hope this helps, keep us posted!