As you can tell, I am new here. I suffered with ATN for six years in the third trigeminal branch. I only had typical TN for about 2 months, believe it or not- before it turned into that constant, aching, throbbing, unrelenting pain. It was intermittent however, but when the attacks would come they would hit for sometimes weeks or months at a time.
Finally, I had enough and went to see a neurosurgeon in September of 2010. Because the neurosurgeon was running behind, an intern listening to all of my symptoms. At the end of the appointment, the neurosurgeon finally came in, did NOT listen to my symptoms again and told me about MVD. I had to ask him what my alternatives were and what the risks were. He told me "well all the other procedures will make you numb for life, this wont" AND.... HA!
On the prep table September 28th of this year, the neurosurgeon believed he was dealing with Typical. He THEN asked me my symptoms. When I told him, he said "hey thats ATN, I dont know if I can cure you now". He didn't cure me, but rather disabled me.
I ended up having a stroke on the operating table close to my brain stem that he claims he didn't realize. I'm 35. He never came to see me after surgery, and I was never admitted to ICU. I kept complaining about not being able to use my right side and how my chin felt like glass had shattered in it, only to be told that was normal and would return. They discharged me, and after three days of still not being able to walk, talk or write, I went back to the same hospital- this time the ER. The ER called in a neurology team and there is was discovered that I did have a stroke on the table. I was left with a VERY rare condition called dysmetria and an even rarer symptom that is being studied by speech pathologists: foreign accent syndrome. I went from speaking American ( born and raised in Pennsylvania) to speaking British.
The complete surgery was a flop. Absolutely nothing went right for me, and just yesterday four months after the surgery my incision opened up at the bottom and was leaking. I had to go to my regular doctor who took care of it but insists I find another neurosurgeon pronto. My neuro that did the surgery dismissed me the day his intern took out my staples saying dont come back unless you have another brain problem. I would consider having a stroke a brain problem. The surgery also left me with two internal carotid aneuryms or infundibulums ( dialation) that were not there on a previous MRA scan I had done.

After surgery, my face was numb as he told me could happen. Actually all he told me that could happen was hearing loss, or a numb face - so I accepted that. It did wake up, almost all the way except for the area around my mouth, some of my chin and a small spot along my mandible. I did NOT come out of surgery with mouth pain. ( chin pain yes). I went to my regular doctor for the chin pain and she gave me neurontin 300 mg a day in October. Come November ( mid november), my mouth started to hurt me where it is numb at ( some of my teeth, gums and lip is numb on the right side, although my lip has started to wake up. Also my tongue tip is numb). She increased the neurontin and my symptoms skyrocketed to constant 24/7 pain and burning in my mouth. Considering that my chin stopped hurting and almost has completely woken up, I am hoping and praying that weaning down on the neurontin and getting off of it will take me back to NO pain in my mouth.

I went to my dentist two weeks ago who said that the neurosurgeon gave the third trigeminal branch one heck of a "ding" and that it disturbed my mandibular and lingual nerves. He then did a panorex on me and stared at it for like five minutes. He believes that my jaw was fractured on my right side close to my mouth. I have an oral surgeon appointment coming up on the 27th. Once he seen that, he said he thinks the anesthisiologist is to blame for this one and potentially even my stroke as she appeared incompetent and too forceful to him.
I also woke up from surgery with staples in my forehead from them having to pin my head from moving. Did anyone else have this?
I may never know what happened to me, but I'm not falling for the "it will be ok, your mouth will wake up" speech from my neurosurgeon who seen me for five minutes once I was diagnosed with a stroke. Not only do I have the mouth problem, but still have the same pain in my jaw as I had pre surgery.
I wish I never, ever had this done! I did not know or hear of anethesia dolorosa before, and he never told me this could happen. In fact, he told me if I didnt let him do the surgery, eventually the pain was going to come and not leave at all. Kinda like NOW?!

Any suggestions?

I have been trying to reply all day but it is hard as this brings back some of my darkest painful times of my own "journey" .
I am sorry for all you have been threw and are dealing with every day.
Yes there a a few of us here who have A.D. some are left with meds as the only options as any surgery will make it worse. other have had Stim surgery. There is the PNS and also a more difficult evasive Motor cortex /deep brain stimulation. ( MCS, DBS )
So my suggestions..I have a few
Get A NEW NEURO DOC.RIGHT NOW!
File a law suit and sue the one who did your surgery. You only have a certain amount of time to do this and each state is different so check into that a.s.a.p.
find a good oral surgeon . long story but I have had my jaw wired 2 times , steel plates and screw on each side of lower jaw . if you have a fracture you want a really good oral doc! and an even better neuro doc. I do not believe lowering and getting off neurotin and having no meds at all is going to cause you to be pain free . I am sorry Please have your regular doc refer you to a pain specialist and a neurologist that is knowledgeable with face pain and T.N. and ask them both what options you have to help lower and control your pain.

believe me when I say "your not alone" . keep posting let us know when you get apt with a new neuro and remember we are here for you . Keeping you in my prayers and sending you Hope , low pain and good energy.
PEACE
Tina...aka ...BMW

edit to say welcome to Neuro talk's .T.N. forum there are plenty of great understanding members here and we all hope you find this forum, Helpful supportive and a comfort of sorts.

How awful. There are so many things wrong with what happened to you that it is hard to know where to begin. The doctor had an obligation to listen carefully to your symptoms and fully discuss what procedures would do what for you. He also had an obligation to tell you all about the risks of any chosen treatment. This goes way beyond malpractice if you ask me. That he also knicked something and didn't recognize that you had a stroke greatly compounds the horror of it all. I hope you find good care and sue the doctor and possibly the hospital. This doc should not get a chance to do this to another patient! I hope you get what you need!!

Thank you both for your replies. Once I started to get able to use the internet, I started looking up MVD. It was then that I ran across AD and wow, the symptoms matched. I had my first good cry last night and then stuck face in ice packs. I may have looked silly, but putting ice packs towards the front of my ear where it meets my face and in the back of my head really helped. I had a teething ring handy from my nephew and ah yeah I used that too. I froze the inside of my mouth beyond belief, took two neurontin, and for an hour felt like myself again. I woke up this morning to unbelievable pain again and of course swallowed down more pills. Does the neurontin make anyones face feel tight or is that the AD? Ive been grabbing behind my ear at the top and pulling up and that actually relieves the tightness for a bit.
I did find a good attorney in November . He didn't have the full scope of damages by then as I didn't, but I did sign a contingency fee agreement with him and them emailed him an update.
Out of all the options for what can be done, are there any non invasive treatments for this? I do have a current neurologist, but I need to find a new one. He diagnosed this as Parasthesia and Trigeminal Neuralgia. THIS ISNT trigeminal neuralgia- heck Id take that back!

I would ask if the PNS would be an option for you. it is not invasive . it is not major surgery like the MVD or mototr cortex. it is not approved by the f.d.a. yet for treatment but it is used off market to help with a.d. atypical t.n. t.n. bi lat t.n. and many other neuralgias and illnesses besides t.n.
It is used as a last option after meds and other surgeries are no longer of help. it is 2 same day surgeries and there is a stickie at the top of the forums here with info and posts of ones who have or are going threw the implant surgery for PNS.
it is not an option that helps everyone but you are able to have a trail and it can be taken out at any time with out any damage to the nerve . Ask the new neuro and see if this would help in your situation.
here is a link to the stickie up top it is a LONG read but has helped others http://neurotalk.psychcentral.com/thread124048.html
sending healing low pain prayers and hope to you.
PEACE
Tina...BMW

Audarah, you've gotten the best advice from Tina. My heart goes out to you and I do hope that your attorney is on top of this. I've often used ice to distract myself from the pain. There are mindfulness techniques that can help you cope with the pain but they do take time to learn. If you have access to a public library, look for the author Jon Kabat-Zinn and what he has published regarding mindfulness and pain. I haven't had surgery for this so I don't have any experience to share. I do hope you find a doctor who can help you more than your current one.

My heart goes out to you.
I'm more and more dismayed, even ALARMED, with what I am finding in the medical profession these days.
It is very dangerous and frightening out there.
Take extra good care of yourself.
I'm glad you have sought legal help.