It's been a while since I've been on here as I've been trying just about every non-surgical remedy possible, but to no avail. I'm not sure how much longer I can take this so I'm back for some more advice.
Unlike most here, I've been dealing with a facial issue for at least 20 some years, however it's been in it's current state for the last 14 years. I struggled starting in 7th grade with extreme (facial) fatigue, then 3 months of insomnia, and never felt right once I started sleeping again. It wasn't until a wisdom tooth extraction at the age of 20 when I had a brief, but sudden disappearance of my symptoms. The difficulty I had breathing through my nose (thought it was due to a deviated septum), the "awkwardness" when smiling, the dark circles under my eyes, and the neck tension all were gone. I couldn't believe it. It was as if this giant weight I didn't even know I had on my shoulders was lifted. All of the self-doubt I had for years was validated. I just wasn't sure what was going on.
Unfortunately this was short lived and complications ensued after a couple of weeks. I'll spare much of the details, but I had a mass develop in my upper left socket. It was accompanied by extreme pain, muscle tension/spasming, and difficulty breathing through the nose. After a removal and eventual subsidence of the pain, the mass returned 3 hours after sitting in a steam room for 15 minutes. The aforementioned symptoms returned and I've more or less been that way ever since.
With the unusual circumstance, including onset and physical symptoms (moreso than just the pain), diagnosis has been difficult. I've got muscles popping out in my mouth but all MRIs are clear. CTs are negative, as are Xrays. I've had more imaging than anyone I know, including WBC scan, bone scan, MRA, MR Neurography, MRIs with and without contrast, TMJ MRI, 3D CTs, etc. I've tried Botox (twice), had 3 nerve blocks (the last one with a steroidal additive), and all the medications (such as 3600 mg of neurontin) yet nothing helps. Blood work is negative and everything points to me being a healthy individual.
What really sucks is that nothing has even REMOTELY helped to lead me to believe I'm heading down the right path. The nerve blocks numbed my face yet it didn't relive the spasm/tension/vice grip on the left side of my face. The medications? Most of the time I can't even tell I'm taking them. If I DO feel an effect it's when I take a higher dose of pain medication and all that does is make me feel tired.
Which brings me to this. I saw a neurosurgeon recommended by someone on this board about 8 months ago. He recommended two potential procedures: one being a DREZ and the other being a motor cortex implant (which is almost NEVER covered by insurance). I'd like to know if any of you have had these procedures and what their effects were. I'd also like to know if anyone else has had, or know someone who has had the spasming that was caused by a whackysensory nerve. So far I haven't had much luck in finding that person (though the pain management specialists make it sound like it happens a lot in back patients). If I could and was able to get an idea if there were effective treatments I think it would help me immensely.
Thanks for the read and the help. It's hard to make a potentially life-altering decision when you don't feel all that confident in it helping. I'm at a point to where I can't stand waking up and want to rip the left side of my face off. I know something needs to change I just don't know how to go about doing it, or WHERE exactly to do it (been to Cedars Sinai, Cleveland Clinic, Mayo, etc.)