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Old 10-05-2012, 09:48 AM
Trach Trach is offline
Junior Member
 
Join Date: Sep 2012
Location: Texas
Posts: 10
10 yr Member
Trach Trach is offline
Junior Member
 
Join Date: Sep 2012
Location: Texas
Posts: 10
10 yr Member
Default Occipital nerve stimulator

My youngest daughter had the Occipital nerve stimulator implant when she was 13 years old. Her headaches went from a constant 8-9 to a 2-3. She went from approximately 12 hospitalizations over 18 months to zero for headache.

Although the stimulator doesn't work for everyone, here are some issues we ran into (and some of our friends):

- the biggest hurdle is getting insurance to pay for the surgeries. First the trial surgery to see if the stimulator works (the battery is not implanted yet) and the the second surgery a few weeks later if the trial stimulator significantly reduced headache pain.

My daughters' doctors were able to show that the stimulator paid for itself if we were able to reduce hospital stays by 1.5 admits per year, so we were lucky and our insurance paid for the surgery, but it was a battle. My neuro told me he had a patient where the trial worked but then the insurance company would not approve the second surgery!

- Discuss where the battery is placed. The absolute worst part of the recovery for my daughter was the placement for the battery incision. It was under her arm - similar to where incisions are made for breast surgery. The pain from that incision was excruciating, but I believe now her pain was heightened by our connective tissue disease. Her surgeon was not helpful at all with pain management after the surgery. However, the surgery dept at the Children's hospital where she had the surgery was cited for this problem by the Joint Commission. Now her docs are ready to bend over backwards to address post op pain for the next surgery.

- If you have the option for a rechargeable battery and it fits your life style, choose the rechargeable battery. My daughter used her stimulator way too much. She never turned it off, so the battery only lasted 18 months instead of 5 years. She is getting a rechargeable battery when she has the surgery again this summer.

If I can ever help with stimulator information, I am happy to share our experience. My husband wants me to have a stimulator implant too, but I don't know if it is successful on TN too. I had my sub occipital successfully ablated and intend on having my ON ablated too.

Best of luck to you!
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