I've read your post three times...as it really concerns and amazes me. Your symptoms sound so very neurological in nature. I don't understand why the pain doc would want to rush you into surgery before you see another neurologist. I do hope you will wait.

For about two years, I have had Atypical Trigeminal Neuralgia (after dental work) and take meds for it. I'm surprised the Gamma Knife Surgery came up so quickly. Any surgery or procedure is something that I "might" do, but only down the road if absolutely necessary.

I have also had some neuralgia in my feet and some other health oddities.

Also about two years ago, I was dx'd with Sjogren's Syndrome, an autoimmune illness. Some of the more common symptoms with Sjogren's Syndrome are dry eyes and mouth. But, it can also cause neuralgia and make one a little more prone to TN or what some people call ATN (atypical trigeminal neuralgia).

My MRI doesn't show much either; no compressions, but I do have some white spots, which scare me. My neuro assures me they aren't in the right type or place for MS.

ETA: When I reported having other neuropathy type pain, my neuro also ordered a nerve compression test. This was fine as well. He told me he might order a small nerve (???) test in the future.

I have heard that both amitriptyline and Gabapentin (Neurontin) together are usually a pretty good combination together for ATN. However, I wonder if any of the meds you are on could cause your hands to shake? Maybe you are on too high of a dosage? (Just a thought)

I myself am on something very similar to Amitriptyline by tablet, but then I rub on my face a specially made cream and in the cream is Gabapentin , Lidocaine and Capsaicin. The tablet I take is a small dosage.

In a pinch, and if you are super careful, you can rub a little bit of an OTC cream with Capsaicin and LIdocaine in it mixed with a regular cream and put this on the part of your face that hurts the most (unless its near your eye). However, you have to be ultra careful about the Capsaicin!!!!! It can't get in your eyes (avoid this at all costs!) and you have to use a TINY TINY TINY bit as it can burn your skin. It isn't easy to get, but there is an OTC cream called LMX (very expensive). If you put a tiny bit of that, a tiny bit of any capsaicin cream (used for arthritis) and a tiny bit of a hand cream, mix it together and then but a small amount of that where it hurts the most, it might help. Be super duper ultra careful! I did this sometimes before I got my RX and it helped a little. (I believe that every little bit helps...this is a horrible pain and an enormous problem).

I had to see a few neurologists before I found one that could help me. I've had several good months, but as it turns out, recently I've had bad flares and I'm not in great shape right this moment. I'm praying that things improve soon. Today, is a little better than yesterday.

I have found that diet can help a tiny bit...and again, every little bit helps. I'm avoiding sugar, flour (bread and pasta) and junk food in general.
It wont hurt and might help. Also, make sure you take the RDA of Vitamins D3 and B12. At some point, you might want to get these vitamin levels checked.

Go to www.livingwithtn.org. I have found many there with good info about TN. There you will find people who have had the Gamma Knife Surgery. I believe it has mixed reviews...some liking it...some unsure. Please check.

For whatever reason, sometimes it is hard to find an intelligent, but also caring neurologist...but you will need one to get through this very difficult disorder. You might have to see several before you make your final decision. Wishing you well on this horrid journey. You have my empathy...my path has been somewhat similar. Personally, I would delay any surgery unless I got a second opinion and/or was very sure. Again, please go to the above website.

Thanks everyone for all the replies. I'm sorry I didn't get back sooner. I saw the pain doctor again today, but they messed up and it was supposed to be a follow up from an MRI, that wasn't even scheduled til next week. I asked to speak to the doctor since I was already there. I brought my husband with me, so he could talk too, because I do have social anxiety and have a hard time speaking up for myself.
This doctor came in and brushed us both off very quickly. I told him that I was having flare ups since Monday and I didn't know what to do. He said for me to increase the gabapentin again, and then very bluntly he said, "Surgery". Then he walked out without any other words.
Last Monday I was near going to the ER for the pain. I was there last month because of the numbness in my arms, they assured me that this is a chronic condition and I need to get proper treatment. It's always very embarrassing for me when I have to go to the ER for pain, because even their pain medications they give me don't really help, they make me sick and basically just knock me out. I feel like a burden on the system.

I have an appointment tomorrow with the neurologist, but I want to fire the pain management doctor, how do I go about doing that? I had to sign a pain form with him, and take a drug test which I passed, but he just keeps telling me to increase my medications that my GP already prescribed me. He's hasn't even listened to my concerns, and all he wants is surgery. There is no way I'm going to do surgery just yet.

Also, my doctor did say he will prescribe me the course of antibiotics for lyme disease, even with the test being negative. Is that a good idea? I'm willing to try it, because at this point I'm just crossing my fingers and wishing on stars.