I have been doing lots of research still and since posting last week. I did go see the surgeon this past Thursday and was told some not so good news. Or at least in my mind I did not receive it as good news. I was crushed. He said he anted to do a 3D MRI image of my brain to get a better look at my brain. Well finally got that scheduled for Tuesday September 3rd at 9am cant wait for that because it is pure torture for me to be put in these MRI machines for hours with the TN pain and in the research I have done sometimes not always does the artery show up on the scans. I am so discouraged by this. I called my neurologist immediately following that appointment and set an appointment to see him. I went to see his Nurse Practitioner that works directly under him when he is not available and she wants to see me every two weeks and is changing my meds around a lot also put in a referral for me to go to a pain clinic to pain management. So I am now taking Tegretol 400 mg 3 times a day, Topamax 100 mg 2 times a day, verapamill 180 mg nightly, 25 mg amytryptyline and oxycodone 5mg as needed for break through pain. So we will see if this works. I am willing to try anything. I know from the responses I got from most of you people were saying I was on very low doses of medication and I relayed that to my doctor and they listened. So I am going to try this run and see what the Surgeon says with his plan and yes I still want Surgery I just want to try anything before cutting myself open. I appreciate all of your support for all my TNers out there It means a lot to hear from people that are or have been in the same shoes.
Also, the MRI may be good news, if they find a compression that helps your case big time, but does not rule out that you have TN. It sounds like they are being thorough more than anything and maybe they are looking into something that they just havent let you in on yet.
Example, my Neurologist at Hopkins keeps saying to "give him 3 months" in reference to IVIG treatment for an auto-immune disorder, its been making me nuts because he wont say why. I had one treatment and they did an EMG and the damage from the disorder is 30% less, so what he was talking about was that I may be cured, but he doesnt want to make a promise yet.
I would drive them nuts with questions. I finally picked a medical students brain like nuts, and they were the ones who finally let me in on the secret so to speak. Could it be the same in your case? I like to look at all the angles....
Yes I had my MRI today and my appointment with the surgeon on the same day whew what a day!! Well he told me to pull up a chair so we could look at the results together and the 3D imagining is so much clearer then the other imaging I have ever had done before. He said to me that the artery is wrapped around the trigemnial nerve and it necessary for him to do the surgery. I was relieved to hear these words come out his mouth. Kind of weird to say that I was relieved but it really did. Especially since i found out this week that my Neurologist according to his records was still treating me for A typical Migraine. I mean really I so wanted to punch him in the face for that because it is insulting to be told that you have headaches when you suffer from Trigeminal Neuralgia, as you you know. Now as soon as surgery is cleared through my insurance they are going to call me to set a date for this month. I am so excited to get this done and over with. I want to be pain free in the worst way. I know I have a long road ahead of me of healing and still some hurdles to make it through but at least I have a clear path for a plan now. Thank you for checking on me it means a lot :)
I can't help but laugh a little Collette. I had my MVD done 10 months ago for left sided TN and ATN. 3 nerves were found to be compressed and I was told I had GN on top of TN and ATN. I have been off of meds and feeling great. YET my neurologist is not convinced that what I had was TN/ATN. He will not change my diagnosis. My records still say: chronic intractable migraine w/o aura. Needless to say I see a new neurologist in Oct. (I am starting to feel TN symptoms on my right side now. Boooo!) I can't go back to a neurologist that still doesn't believe what I had was TN. Especially because there's a chance that it can come back at some point in life on the surgery side.