Wednesday, July 1, 2009
Have returned from the Cleveland Clinic where I received my new ANS occipital stimulator from St. Jude Medical and their occipital stimulator/migraine study. In keeping with St. Jude's request, I won't say if I got a "real" stimulator program or a "bogus" stimulator program until the logging portion of the trial is complete in 12 weeks. They told me the stimulator is the same, they just give it programs that don't work, or programs that do work. After 12 weeks all the stimulators are programmed to work. Since the stimulator feels "buzzy" when it works, you definitely know if you have a working one or not, but the study coordinator for Cleveland Clinic can't know. I have 4 programs which could or could not work, that I can rotate using the control pad and paddle.
I have to go back again next week on the 9th. This is financially challenging. Not sure what kind of flights, etc., I will be able to find. I definitely didn't feel much like travelling today and had not planned to, but came back a day early because I wanted to save the extra day's hotel money for the trip next week.
According to the St. Jude's representative, the study is now closed to new participants and is in the "wrapping up" phase. They hope that the study will be positive enough that insurance companies will no longer consider it investigational and will pay for it as an alternative for patients with intractible headache conditions.
My brother who went with me said there was a lady there who was finishing up her year of the study. She had gone from multiple disabling headaches a week to three mild headaches a month. Hoping for similar results myself by the time the year is up. I guess you can tell if I have a working model or a non working model by the number of "Bad Headache Days" I have in the next three months!
I have a neck brace to wear for a while to restrict neck movement, and am restricted on movement and what I can pick up, etc. for a while too! The battery pack placement is in my right hip and so far is the most painful part of the operation. My puppy Augie was quite interested in the neck brace - I think he thinks it's some kind of dog collar! I don't recommend travelling so soon after the operation, but I really didn't have much choice. I hope hope hope that this works for my headache and that if it does others will be able to get their insurance companies to pay for the operation because of this study.