The pain doctor said that my lead placement did not make sense. I brought color coded pain charts to show him where my pain was, where my leads were, and where I felt stimulation so he was able to see the holes where I needed coverage. He said that the lead configuration was not going to be able to provide me with adequate coverage and pain relief. Moreover, my doctor never should have implanted a different lead configuration for my permanent implant without doing a trial with it first. So, after my first trial left me wanting more coverage he really should have done another trial with his proposed lead configuration.
In his opinion, I shouldn't even try to get coverage to the left AT nerve. He thinks I should have two, 8-contact leads in a "v" pattern on the back of my head covering both lesser and greater occipital nerves on the left and right. He thinks that because occipital nerve pain refers pain around to the temples and behind the eyes, that covering the occipital nerves well could in time stop that referral pattern. He also said that even if the AT nerve pain persisted that he thinks I would be happier with great coverage on the back of my head instead of this crappy, spotty coverage I have now. He referred me to a neurosurgeon that is supposed to have a lot of experience with this surgery and I see him on the 21st.
I also showed him the prescriptions I was on for my pain. My current doctor has a 3-pronged medication approach to occipital neuralgia - opiates, anti-convulsants (for nerve pain), and muscle relaxers. I mentioned in a previous post that I was still in constant, severe pain almost all the time despite these meds and that my current doctor insisted nothing else could be done to help me. Well the new doctor said that was untrue. He said that changing me from short-acting pain meds to long-acting pain meds would be a good first step because I am in constant pain. Also, there are a variety of anti-convulsants and muscle relaxers we have yet to try that could be more effective. Overall, I left feeling that this doctor really listened to me and had a good handle on how to proceed from here with my care. After I get the new surgery scheduled, I will leave my current pain doctor and transfer my care to the new doctor.
In the meantime, I had to go back to my current doctor to get medication refills. I asked for long-acting pain meds and he prescribed them to me. I couldn't believe that he spent the entire last year insisting he couldn't give me anything different, and then after a mere suggestion I had a new script! Turns out, they are more helpful. I'm not taking any more medication than I was before, but I'm down to 2 pills a day instead of 5 and the extended release quality of the new medication keeps me from having highs and lows with my pain during the day. My current doctor also had a bunch of suggestions on how to fix my lead configuration, all of which require a neurosurgeon. He still thinks he can get coverage to that left AT nerve. I refuse to let him operate on me again because I don't trust him, but I am curious to see if the neurosurgeon I'm going to visit thinks I should try for left AT nerve coverage or not.
I'm so ready to get this stimulator fixed. My life has been put on indefinite hold since the surgery, and I'm ready to move on. I try to stay busy and not worry constantly about my stimulator and my pain, but it's hard to divert the mind from a persistent, brain-rattling torment. Speaking of, I need to sign off from this now. My neck and head are warning me that if I don't quit soon they will make me pay. Wishing everyone a day of less pain and more fun.
