Today I met with the newest doctor on my journey to become pain free. Dr. Lee is awesome with facial pain and I highly recommend anyone that goes through this hell to see him.
Dr. Lee came in and introduced himself and asked how I was doing. He asked how I felt and what my goal was to accomplish. After explaining to him that I wanted to be “fixed” and no longer dependent on medications to make it through my day we talked about my history from the occipital neurectomy forwards. He asked me questions on exactly what pain I felt and to what extent I felt the pain levels.
This is where my hopefulness quickly started to fade. Dr. Lee stated that I do NOT have the classic Trigeminal Neuralgia that can be treated with surgical procedures. What I have is Trigeminal Neuropathic Pain and that I’m only at the beginning stages of this pain. He stated that this can become exponentially worse than what I am currently experiences. He believes that this was triggered with the Botox injections I received back in June. We questioned why this ONE injection time caused this after I have had injections 3 other times previously. Dr. Lee stated that he was unsure, the nerve could have been hit, the botox could have attacked the nerve, etc.
At this point I am in tears listening to him tell me about this. All I could manage to ask was if I would be like this forever. My heart sank when he said yes. I came to his office looking for answers. Yes I received answers today, however, they were not what I wanted to hear. I was hoping for him to tell me that my case was simple and we would be able to fix it. Instead I left with a face burning from the tears and a script for medications that I have to work my way up to the dosage that “hopefully” will handle the pain. The only surgical option I have is a neurostimulator. With this I have to attempt this medication for 6 months and pass some other testing before my insurance would even hear the pre-approval. And apparently it’s harder to get approved by my insurance for this than other insurances. Of course! With regular TN treatments, there are several options that damage the nerve to provide relief and doing so with me would only push my pain beyond my current pain levels now. Doing so could cause a condition called anesthesia dolorosa, which is a possibility I may develop currently due to my prior treatments I have received already.
I left his office feeling very defeated and hopeless. Nobody wants to hear that they will be in excruciating pain for the rest of their life. Dr. Lee stated that if my condition progresses the suicide rate radically increases as the ability to escape the pain decreases. Once again, something that I did NOT want to hear. I do appreciate his honesty and that he did not sugar coat this for me. I cried all the way back to the truck and for some time on the car ride home. A pit stop at the Oliver Winery definitely made the day a little more enjoyable. 🙂
Am I scared? Yes, I’m terrified of what this pain will do to me. Am I scared of the side effects from the medicine that I am having to take? Yes, but I will choose one evil over the other. I allowed myself to have my pity party on the way home. Now it’s time for me to suck it up and find a way to kick the TNP’s ass. I will not be defined by chronic pain. I do not want my kids growing up remember that mommy couldn’t do anything because she hurt too bad. I will win. I have to.