Does anyone have this or does anyone know anything about this? my first nerosurgen thaught i may have this but after three failed surgerys gave up on me and sent me to a different nerosurgen who gave me the gamma knife. this also has not worked. i have an appoinment the 19th of this month and i want to ask him about this but i want more information on so if anyone can tell me anything it would help me so much.
Michaela,
If what I read is correct on the Facial Pain Resources page, ATFP, or Atypical Facial Pain, is the term used by healthcare professionals when there is facial pain of an unknown origin. This was actually my Neurologist's diagnosis for me. I've also read, though, and I cannot remember where now, so I cannot quote or site, so let me just make that disclaimer, that ATFP is often used by doctors who are not aware that a certain set of symptoms represent a disorder of the 5th cranial nerve, which follow a the specific path of pain of that nerve, which is obviously, Atypical Trigeminal Neuralgia. It is my understanding, that all too often, ATN patients are called ATFP patients.
However, this is kind of good news, for you, in my opinion. You may be able to see professionals, now, that will help you "treat" the pain and symptoms. As I have read in case after case after case, and seen in "real life" experience from talking with patients. . . . well, plus, my Neurologist told me this. . . . Atypical pain is not usually helped by surgery.
I put a post above, calling out to all "Atypicals". One of the questions I was trying to find out is if any Atypicals on this site had ever been helped by surgery. I had some other questions too. But, sadly, no one has responded. These are things I really want to know about people with our disorder. I know they are here. I see plenty of them joining the site on almost a weekly basis.
I've made it my focus to try to raise awareness for people with Atypical TN, to the best of my ability. The healthcare profession is sadly lacking in research and understanding in this area. It is a real problem, though. I see people state over and over again, that they have the same symptoms, symptoms that run along the TN nerve, specifically. It's why I created the Atypical Trigeminal Neuralgia subgroup.
I've had Atypical pain, which is textbook Atypical Trigeminal Neuralgia as defined down to the last fine detail , no doubt, although it has been called other things by a couple of doctors in the past. I have never been recommended for surgery, and now I'm glad. I'm not seeing anyone with this type of pain with any surgical success. I see some managed, though, to a level of function. Let's just say that if there are any people with ATN here who have had surgical success, I would surely like to hear from them.
I'm glad to be able to talk to you again, here. We haven't talked in quite awhile, and I wondered how you had been. You deal with this with such bravery to be so young. I highly commend you for that.
Guess I will close with my usual line, but I also add to the ((hugs)).
All the best wishes for effective, informed and compassionate care,
Stef
My parents looked up atfp and it said that it can be sharp shooting pain like i have. but atfp can only rarely be helped by surgery. and after all the surgery we r thinking maybe it could be. so i have an appointment tuesday and we r going to ask my nerosurgen about it but i wanted more info about it. Its just nothings working and im ready to be out of pain. I know i have very sharp pain and i thaught atn was more dull sore pain like a tooth ache but a bad one. but thank you for your information it helps and i hope that he can give me some more insight as well and hopefully i can reach a mangable solution to this. (hugs) i hope i can talk to you soon
god bless best wishes for you
Stef said:
Michaela,
If what I read is correct on the Facial Pain Resources page, ATFP, or Atypical Facial Pain, is the term used by healthcare professionals when there is facial pain of an unknown origin. This was actually my Neurologist's diagnosis for me. I've also read, though, and I cannot remember where now, so I cannot quote or site, so let me just make that disclaimer, that ATFP is often used by doctors who are not aware that a certain set of symptoms represent a disorder of the 5th cranial nerve, which follow a the specific path of pain of that nerve, which is obviously, Atypical Trigeminal Neuralgia. It is my understanding, that all too often, ATN patients are called ATFP patients.
However, this is kind of good news, for you, in my opinion. You may be able to see professionals, now, that will help you "treat" the pain and symptoms. As I have read in case after case after case, and seen in "real life" experience from talking with patients. . . . well, plus, my Neurologist told me this. . . . Atypical pain is not usually helped by surgery.
I put a post above, calling out to all "Atypicals". One of the questions I was trying to find out is if any Atypicals on this site had ever been helped by surgery. I had some other questions too. But, sadly, no one has responded. These are things I really want to know about people with our disorder. I know they are here. I see plenty of them joining the site on almost a weekly basis.
I've made it my focus to try to raise awareness for people with Atypical TN, to the best of my ability. The healthcare profession is sadly lacking in research and understanding in this area. It is a real problem, though. I see people state over and over again, that they have the same symptoms, symptoms that run along the TN nerve, specifically. It's why I created the Atypical Trigeminal Neuralgia subgroup.
I've had Atypical pain, which is textbook Atypical Trigeminal Neuralgia as defined down to the last fine detail , no doubt, although it has been called other things by a couple of doctors in the past. I have never been recommended for surgery, and now I'm glad. I'm not seeing anyone with this type of pain with any surgical success. I see some managed, though, to a level of function. Let's just say that if there are any people with ATN here who have had surgical success, I would surely like to hear from them.
I'm glad to be able to talk to you again, here. We haven't talked in quite awhile, and I wondered how you had been. You deal with this with such bravery to be so young. I highly commend you for that.
Guess I will close with my usual line, but I also add to the ((hugs)).
All the best wishes for effective, informed and compassionate care,
Stef
People who have severed nerves are dying in pain hoping to have them reconnected to get out of pain! DO NOT LET ANYONE CUT YOUR NERVE…
but i dont have anyother options
Hi Amanda, any news on your next steps?
i had surgery 3 weeks ago tommrow and im doing great. He did not cut my nerve. he was getting ready too when he saw an artery pressing on the nerve so he did an mvd and cut away another vein. 4 surgerys and gamma knife and im not in pain. its amazing. i feel i have my life no more hurt no more surgery no more doctors. At 16 years old its like i just came into this world. like i’ve been sleeping for a long time and just woke up. The weight of the world is off my sholders and now i can move forward graduate high school, then college big dreams. Never give up
Wow Amanda, that's absolutely fantastic!!! You just made my day, I'm very very happy for you!
A clarification for Amanda Michaela: Two "types" of trigeminal neuralgia are widely recognized. Type I (called "typical") is characterized by volleys of sharp, stabbing, electric-shock pain, each stab lasting up to two minutes, and the volley up to two hours, with quiet periods between volleys. Type II (called "atypical") has a character of more constant, dull, aching, burning, searing pain that can last 24/7.
Type I TN often responds positively to anti-seizure drugs like Tegretol, Trileptal or Neurontin. Type II TN sometimes does not respond well to these drugs, but may be treatable with a combination of anti-seizure agents and tri-cyclic antidepressant drugs such as Amitriptyline, tranquilizers, anti-convulsive agents, or Lyrica. From what is now known, I surmise that the underlying damage mechanisms for the two types of TN are probably different. Atypical TN is less likely to be successfully managed by any of the available surgical procedures for Typical TN.
It is possible for a patient to have BOTH types of symptoms at once. A few also have them on both sides, generally with a different character on the two sides even when the pain happens simultaneously. In my personal view, neither of these patterns of pain should be mistaken for or called "atypical facial pain". This latter medical entity is a garbage diagnosis which basically amounts to "damned if I know" on the part of an ill-trained neurologist or other medical professional.
Some frustrated doctors make matters worse by assigning atypical facial pain to a class of disorders identified in the Diagnostic and Statistical Manual of the American Psychiatric Association. "Somatoform Pain Disorder" is pain which crosses expected boundaries of nerve distributions, and which doctors are unable to assign to any known medical disorder, in patients who also have high levels of depression or anxiety. Fortunately, the APA is reconsidering the definitions for the entire class of so-called "psychosomatic" mental conditions or disorders. I have encouraged members of the TN Association Medical Advisory Board to submit their own clinical experience to the APA public commentary gateway for the 5th publication of the DSM, encouraging the APA to sharply narrow the defining parameters of the psychosomatic disorders to EXCLUDE any form of head and neck pain which is not otherwise accompanied by widespread unexplained symptoms not attributable to TMJ, Fibromyalgia, Lupus, or systemic neuritis.
Feel free to follow up with other questions, Amanda. I wish you well.
Regards, Red
I should add that for both Type I and Type II TN, some patients are also helped by opiod medications. Stef runs another discussion group for people who use or are considering this class of meds.
Regards, Red
thank you so much
Steven said:
Wow Amanda, that's absolutely fantastic!!! You just made my day, I'm very very happy for you!