In march of 2009 I was implanted with a Medtronics ONS (Occipital Nerve Stimulator) at UCLA Medical Center Santa Monica, Ca. Since my surgery  and the implantation of the ONS I have not been without CH's for more than 72 hrs. and after 6 months of adjusting and readjusting the settings of the devise nothing changed. The doctors finally said oh well sorry it didn't work for you.
You should know, while we were setting and resetting the Medtronics device implanted in me for life I had to ask what is your base line for your settings? They have none; it's all guess work on a system which has not been approved by the FDA and which my own HMO saw as "Medically Unnecessary" except that the doctor asked for approval of a Spinal Implant for me not an ONS and thus got me on the table. The HMO didn't know I was having an ONS. That's the subject of another story.
I'd like to talk to anyone who has had the ONS procedure at UCLA or is thinking about it currently.
Thanks,

David

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

david, i am going to talk to a doctor in st. louis about this in the next few weeks, as recommended by my neurologist. I have been kinda leary of this whole procedure. Now even more so after reading your post!.  Chris

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!