I just want to be diagnosed once and for all. I want to be given a prognoses. Isn't that everyone's right; to know their enemy; know how long they may have to face it, and what they can do about it? I'm also of the person that believes one has the right to decide if they can and will live in pain for the rest of their life. I just want to know what I have. "One big trigeminal attack" and "overstretch injury" just are not cutting it with me anymore. I match AD to a T. Some on here saying I should thank my lucky stars that I don't have it. HOW DO YOU KNOW I DON'T? I live in constant 24/7 pain, numbness, burning, heaviness... dread. But thank you for telling me that YOU have it way way worse than ME. I think I have been misled enough and now I have a right to DEMAND answers. I have a right to know what went wrong and by what process. Now that my original neuro left the facility, I should have an easier time finding a new neurosurgeon. In any event, I have to find time getting a neurologist in the greater Pittsburgh, PA area. IF YOU KNOW ONE, LET ME KNOW.

But Im sorry "I dont know" isnt going to cut it for me anymore. That MVD CAUSED it. SOMEONE KNOWS. PERIOD.

(((( Audarah )))),
I’m so sorry to read of your horrible experience in your previous posts and here…although I can’t begin to imagine what your going through, I do relate to pain, anger and wishing I had straight answers.
All I can say is what you already know, be your own best advocate, whatever it takes to get answers and be heard.
Are you able to get copies of previous neurosurgeons reports, files of your case?
Do you have a trusted doctor that may be able to get them easier for you?
I’m sorry if someone implied or said outright that you don’t have something or their pain is worse etc.
Only YOU know how you feel and often the written word without feelings and emotions can come across the wrong way or be misinterpreted.
I hope you know you are supported here, and I’m sending positive thoughts as you go forward looking for answers and relief of your nonstop pain.
Thinking of you, Mimi

It sounds like you are in terrible pain.

This probably won’t make you feel any better, but as I read blogs and discussions I’m amazed that everyone else has much greater pain than I do. I can’t imagine being in so much pain that I couldn’t work or live a relatively normal life, and I’ve had TN for a long time. It is progressing, but slowly.

My pain is controlled by one medication (was Neurontin, now Lyrica), so I count myself lucky. I haven’t been prescribed opiates since my diagnosis (they were feeding me Vicodin, Percocet, etc. before it like they were M&Ms) because apparently it can make the pain worse. (Links: It might be worth considering the possibility that some people really do have more pain because of the medications they’ve been taking.

Use your rage to get your diagnosis. I spent years wondering what was wrong, thinking (and being told) that I was crazy, and I didn’t get any real answers until I finally got angry. It might take time, and don’t get discouraged if you don’t find the answer right away.