David, my husband (diagnosed as atypical, drug-resistant, chronic CH) had ONS on a trial basis but not at UCLA.  He didn't proceed to permanent implants.  Sorry you didn't find this site before you went ahead with it.  If you want to chat, feel free to PM me.  My e-mail may be available here... either way.

Laurie

Hi,
Sorry to here you've come to the point that an ONS is a possible alternative for you. Here's what I would do in hindsight.
1. Ask the pain specialist how many ONS he has done and how many have been successful. Be Sure he understands you're talking about the devise for headaches as they use this devise for back and knee injury also. My pain specialist told me he had done hundreds of these surgeries but he was talking about the Medtronics device not an ONS; very misleading.
2.Make sure that both your doctors are familiar with your "Cluster Calendar" your chart on how often you have CH's to determine if you really are chronic. If you do not have a calendar then I strongly suggest that you postpone this appointment until you have at least 2 to 3 months of a calendar. If you are not chronic  then is this surgery really an alternative for you? My doctors never viewed my calendar.
3. There will be a temporary implant placed to see if you get some benefit from the device. You should determine when you have the most CH's and schedule the temporary implant during that time or during a cycle. If you're not having CH's how can you make a good evaluation of the devise? They will want to hurry you; don't let them!
4. Oxygen!!!!!!! Are you using a minimum flow of 15 lpm O2? Oxygen to a CH suffer is what aspirin is to a normal headache suffer; start there.
I don't recommend this surgery to anyone because it is too experimental and when it is time to set up the devise it is all guess work. I'd be happy to talk with you by phone if you like and you can contact me at my E-mail haubels@att.net
Good luck!