Saturday, September 22, 2012


I know it's been months. The truth is nothing has changed for me and I didn't want this blog to turn into me just complaining. My Medtronics rep is absolutely impossible to get ahold of. I have been trying to touch bases with him for what seems like ages. I suppose it's not his fault, since my last rep went on maternity leave they have been swamped. I'm just tired of waiting.

Originally he gave me the name of a doctor who would be my best option for the next revision. I was excited, despite the fact he was out of my network. I thought getting insurance approval would be the most difficult part, boy was I wrong. Legally I'm entitled to a second opinion, and it turns out that Dr. Boggan was the only doctor in UC Davis to do this surgery, so I have to go out of network. I went to my general care physician and got a referral. Then I got a phone call saying this particular doctor "is not interested in my case." Hmm. Alright. But Jacob recommended him, so I thought it was a mistake. After months of trying to get an explanation, Jacob simply said we need to find another doctor. It's been such a painful process. I may have to go to San Fransisco since so many doctors in the Sacramento area know and respect Dr. Boggan. My theory is they see him as the best and they wouldn't be able to do any better. Who knows?

With all this silence from Jacob I just want to shake him and remind him this is my life. I am in so much pain. I don't even use my stimulator any more because it doesn't work. I'm tired of waiting to live again. I'm not putting my life completely on hold, but there is so little I can do. I've been living mostly with my mom because I'm crippled by headaches and I can't do even simple chores. Painkillers are the only thing that works right now but I hate them. I take them so I don't rip out my hair and so I can get out of bed.

I know things will get better. I'll either get the stimulator fixed or I'll learn to live better with the headaches. I really don't want option B though. I just can't imagine my life with chronic pain...


  1. So sorry you are getting the doctor run around. I have heard about people having problems with stimulator placement. I have not had ANY issues, but I only have one lead to the left occipital nerve. After a year of constant use it started to "cross talk" to the trigemenal and supraborbital/facial nerves.
    My implant was done by a pain management specialist at the Cleveland Clinic. If you are looking in San Francisco, Dr. Goadsby practices there. Good luck getting your programs fixed. Do you also have an occipital lead? Just wondering if you do if someone could turn off the painful supraorbital lead and leave the occipital one....

  2. I only have a supraorbital stimulator (think directly above the eyebrow). Since I have Hemicrania Continua my headaches are located solely in that one area. I actually think my stimulator is doing that "cross talk" you spoke of. When I turn it on it hits nerves in my scalp. I was thinking with my next revision possibly getting a occipital nerve stimulator too. My neurosurgeon didn't want to put in both because it would have been too difficult to position me during surgery. What are you going to do with your stimulator? Perhaps a revision?

    Thanks for the lead on the doctor in San Francisco! I'll have to look him up. It's so difficult trying to find a competent doctor/neurosurgeon. I've actually found it harder than finding a good partner!