tell me your thoughts before I let you know what I learned today at the Cleveland Clinic. you might be as surprised as I was. don’t believe everything you read.
Hi Tammie,
I don’t. believe everything I read, nor anything that doctors tell me about TN, especially ATN, because few even know what the condition is, really.
Many rsearch hospitals have websites which do not differentiate between ATN, and Atypical Facial Pain.
The person whom I consider to be the most trusted authority I’ve spoken with on the subject of Atypical Trigeminal Neuralgia is a Neurologist specializing in Head and Face Pain affiliated with a world class hospital. Probably, the second most notable opinion on the subject of ATN came from my current Pain Management doctor who has practiced medicine internationally.
I am always surprised whenever I find a doctor who actually understands the defnition and characteristics of the condition. So, I have spoken with a count of two medical professionals, who, in my opinion, at least have a solid understanding of ATN. However, they differ in opinion as how to properly treat the symptoms of Atypical TN.
I began having pain in the right side of my face in 2003. It was diagnosed by my General Practitoner as TMJ. Since I had a clean MRI, I accepted the diagnosis, although my symptoms did not align with TMJ. As time passed, my condition worsened. By 2009, it was an almost unbearable and bilateral conditon characterized by symptoms such as throbbing in all teeth at once, a crushing feeling as if there was a vice grip on both sides of my head around my temples, a sensation as if there were a chip clip on my gums, or at other times the feeling that they were being poked at with an ice pick, burning in my cheeks and gums, etc.
One night of many nights researching TMJ in desperation to try to find out what may help, I ran across a link to the words “Atypical Trigeminal Neuralgia”. There is found the precise definition of all that I had been feeling for years!!! As I read, (not to be melodramatic), but honestly silent tears streamed down my face. I ran from my home into my car and drove down the street to a parking lot where I could have privacy from my girls and fiance to call both of my parents, who had both been concerned for some time about my facial pain. I asked them both to immediately go to their computers and key in the words “Atypical Trigeminal Neuralgia”. “THAT’S ME”!!!, I exclaimed. After the both read it, neither could disagree. All of the symptoms I had been telling my family about which had plagued me to the point of desperation, for years, were finally clearly defined in black and white.
My mother, who had previously worked for a group of Neurologists for years, had heard of TN and ATN.
I’ve spoken with other patients from all around the world who have the same, or similar symptoms as I have.
What defines true Atypical Trigeminal Neuralgia, what the common denominator is, would be that the pain affects specifically the pathway of the Trigeminal Nerve, and does not fall into the category of classic Trigeminal Neuralgia.
Now, I’ve spent three years reseaching ATN, both online, and consulting with any professional , or patient who will speak with me on the subject.
One physical therapist I met believes that ATN pain can be cured by exercises of the neck and face. This did not work for me, but I cannot deny that for some, I believe that there may be a link between hypersensitivity of the TN nerve and cervical spine problems. That’s just a theory I have.
So, what gives?
Surprise me! 
Best regards,
Stef
http://my.clevelandclinic.org/services/surgical_treatment_for_headaches/ns_overview.aspx
I have read this post before and I believe this is the one which I found alarming enough to draw to the attention of my colleagues, as this description is Atypical Trigeminal Neuralgia is not only referred to as “Atypical Facial Pain”, it also insinuates psychological treatment is needed.
I was not depressed upon onset of symptoms. I was in the prime of my life, with a new baby, a job a loved, a happy home life with my husband and two children!
With all due respect, Misstammie, what is posted here regarding the symptoms of ATN, which they are referring to as “Atypical Facial Pain” (a wastebasket diagnosis), is a prime example of EXACTLY what ATN patients do not need to hear.
Atypical Trigeminal Neuralgia no doubt may be the cause of depression for many, but there are no studies found by our resident researcher on this site to substantiate the statement that ATN patients may need psych therapy.
Letters and phone calls have actually been made by senior members of our site in attempts to have them correct the incorrect statements made on their webapage addressing Facial Pain which is not clasic TN.
Please tell us your thoughts.
Your friend,
Stef
Excuse the type-os! Working from an Ipad until my computer is fixed, and these buttons are hypersensitive! I’ll not even attempt to go back and correct them all, as the site does not allow for proper editing with Ipad.
Thanks.
Tammie, a lot of nonsense has been written about Atypical Facial Pain. But amongst the nonsense there are some nuggets, and a lot of the nuggets are right here on Living with TN. Stef co-wrote with me and Gloria Erickson the Face Pain Info tab on our menus. And founded partly on the experiences of the people in Stef's ATN group, I researched and wrote almost all of the Wikipedia entry on the subject.
The very next time a doctor uses any of the following terms, I urge you to politely and calmly tell him to stick it where the sun don't shine, because he's potentially guilty of malpractice. In my personal view, based on 15 years of working in this branch of the medical literature, absolutely NONE of the following terms has any factual basis:
-- Atypical Facial Pain
-- Psychogenic Pain
-- Somatiform Pain Disorder
-- Conversion Disorder
-- Complex Somatic Symptom Disorder
The reason these terms are invalid is that there is no body of standardized observational data to establish a distinct set of symptoms which fit the diagnoses, and there are no reliable programs of treatment for any of them -- either psychological, psychiatric, or medical. Any physician who uses such terms should have his or her mouth washed out with soap. I might add that Stef and I and a few others are making progress in turning around prominent face pain doctors on this subject, including several who now serve on the Medical Advisory Board of the Facial Pain Association.
Regards and best,
R.A. "Red" Lawhern, Ph.D.
Resident Research Analyst, LwTN
First, I"m sorry I can't type very much now, as I am at work, and my kiddos return from music shortly. :)
My pain has always been constant, burning, and never shock-like episodes lasting only a few seconds. No doctor has ever said the word "atypical" to me until yesterday. I mentioned it to Dr. 6 and he said that terminology means nothing. Only descriptions of pain.
In May, I had an MVD. Since then the pain has increased ten fold. I moved home to Indiana, started seeing docs at IU/Methodist, and went to the Cleveland Clinic yesterday.
Every doctor says something else.
dr. #5 thinks he sees a lesion. Insists I need a rhizotomy. dr. 6 says NO to rhizotomy so he referrs me to cleveland.
dr. #6 and 7 think the lesion is from my MVD.
dr. 6 also told me that because my pain is "burning" no surgery will help, and that is why i'm worse after MVD.
dr. 8 tells me "You do not have trigeminal neuralgia" !!!! He said I have "Atypical Facial Pain (Trigeminal Nerve Distribution) he referrs me to Dr. 9. He also says, Atypical Trigeminal is no such thing. He said TN is so specific to the shock like pain, that constant pain is something different. He also insists that anything I read about ATN is not true. I mentioned the support group, and he said not to read the internet.
dr. 9 tells me I have "Posttraumatic Neuropathic Pain", due to my MVD. He says I probably started with TN, but the MVD bruised and damaged the nerve, and the MVD shouldn't have been done to begin with. Now, he says that my only options are nerve stimulators, (not FDA approved, but he has done 50) or cutting the nerve, which dr. 6 made me promise to never do.
what is going on here? why is there so much confusion?
and really, where do I get relief, other than narcotics?
I am fed up with doctors, the internet, everything.
Tammie, I don't blame you for being fed up! It sounds like you are getting the run around..big time. I feel really bad for you. That is way too many conflicting opinions. All you want is for the pain to go away.
When I was at a point of severe frustration with my pain, I went to my GP and told him I wanted to sever the nerve.
He said no way, that opens up a whole nother set of problems, you don't want. If it weren't for him..I would be pretty lost right now. We have a good relationship and he is the one who's been there for me thru all of this.
My wish is that you too, can find a doctor that understands and is compassionate. All my best, Min
thank you 
Min C said:
Tammie, I don't blame you for being fed up! It sounds like you are getting the run around..big time. I feel really bad for you. That is way too many conflicting opinions. All you want is for the pain to go away.
When I was at a point of severe frustration with my pain, I went to my GP and told him I wanted to sever the nerve.
He said no way, that opens up a whole nother set of problems, you don't want. If it weren't for him..I would be pretty lost right now. We have a good relationship and he is the one who's been there for me thru all of this.
My wish is that you too, can find a doctor that understands and is compassionate. All my best, Min
thanks so much, jackie.
the only people i trust anymore are those who are living it. and have experiences to back up their statements.
we are all guinea pigs.
Jackie said:
Hi Tammie
I do not have the medical knowledge needed to help give clarity to this situation, sorry. What I do have is the ability to see your Dr's are ubeeeelievable! How are you ever expected to trust any of them!
What I do have to share with you is that my mother in law as a retired nurse has some medical training of course and has tried to help me where she can, she has never doubted me as her very good life long friend also had TN. In the 1960's she had her nerve severed, I fully understand her choice, there have been times I felt like doing it myself if I knew how! Now it did cure her of the pain but she is TN not ATN. What has showed up over the years is it has had a serious result in how she looks. Her face has drooped on that side very badly as in stroke or bell's Palsy. I can see you are a very pretty woman and worry about how you would cope with that over the years.
It's true its nearly 50 yrs and they may be able to perform it better now but how do we know? A woman's life can be drastically changed by her looks and I would urge you to seek psychotherapy counselling before making that sort of decision. I would imagine most of us would prefer not to look like that.
I do sympathize, I can well imagine how bad you feel and we all want a magic bullet. It's a dreadful choice, pain versus looks, but really it must be considered and I know not many people have seen someone 50+ years down the line to compare notes with.
I hope I am not giving another opinion to muddy your waters, that is not my intention. I just want you to be able to make a clear choice in the knowledge of what you may face.
I hope you are able to find some relief very soon, you have suffered so much.
Jackie
Oh Tammie,
I don't even know where you should go from here. You have had so many mixed messages from so many 'seemingly' qualified Physicians. Please don't quit. Eventually you are going to find the right answer. I know Red, Stef and Gloria are very well versed and I think they are good sounding boards when you need a layperson to bounce an idea off. We aren't supposed to give out medical advice here but I do respect amount of research they have done - including dispelling some of the myths.
Elaine
Dear Tammie,
I admire the intelligent bravery of your statement. After trying to make sense of what I was reading for so long, and trying to understand conflicting information from doctors, I too decided to listent more to those who are “living it”. When I did, I found that there is mainly a common denominator, as I mentioned, between us. It isn’t depression. It is chronic pain of the Trigeminal Nerve. The character may differ slightly, but ATN follows the same path in patients, or, it is my laymens belief that obviously, it isn’t ATN, the key words being “Trigeminal Neuralgia”, meaning “pain of the Trigeminal Nerve”. “Atypical”, simply meaning that the pain is of a different characteristic than those who have Type I. That is why I like the term Type II TN.
I really enjoyed reading Red’s post and I agree wholeheartedly, as I usually do with Red’s insight! Red has been studying Facial Pain for years, and is a valuable advocate to us with Type II TN.
I have seen many physicians who had many different takes on my condition. I have encountered a few who did not understand Type II TN, and tried to treat me as a Type I patient. I’ve walked out of offices never to return from offices of physicians who were clueless about my condition. I stay on a mission for adequate pain relief, so that I may be in proper working order to rise to the challenge of raising my girls. So . . . . my motto is “DON’T LET YOUR PAIN BE DISMISSED”!!!
So, that is my best advice to you. Don’t let your pain be dismissed, Tammie. You deserve the best quality of life possible. I hope you find the informed and compassionate medical professionals who can help give that to you.
I am alarmed by what I have read, this clinic’s attitude of dismissal of the condition, Type II, or Atypical Trigeminal Neuralgia.
Your friend,
Stef
Dear Elaine,
As I was speaking to Gloria last night regarding your comment, I have to give you thanks on behalf of she and I for the compliment that you give to she, Red and I.
Red has learned a lot through many years of volunteer work and research with facial pain patients and organizations. Gloria and I have just done a lot of research to try to help ourselves! If we are able to help others with what we've learned, that makes me feel useful. It is friends like yourself who help us to learn more, so that we can, hopefully, help others.
By reaching out to others who share your condition, you are doing the same thing. So, I am grateful that we have friends like you, willing to help others with compassion armed with what knowledge you possess.
Thank you for your contributions and take care, friend!
Hugs,
Stef
Elaine Iles said:
Oh Tammie,
I don't even know where you should go from here. You have had so many mixed messages from so many 'seemingly' qualified Physicians. Please don't quit. Eventually you are going to find the right answer. I know Red, Stef and Gloria are very well versed and I think they are good sounding boards when you need a layperson to bounce an idea off. We aren't supposed to give out medical advice here but I do respect amount of research they have done - including dispelling some of the myths.
Elaine
dear Tammie,
In late 2007, my 7-pad MVD failed 2 weeks to the day. I ventured along, having 2 Radiosurgeries, the second leaving me disabled and no longer a candidate for further surgical intervention, such as deep brain stimulator.
At no time did any of my doctors (Elliot, Massachusetts General, Dartmouth Hitchcock) ever use the word "think", or suggest a different diagnosis.
Never one to give medical advice, I respectfully suggest that you travel along a medication route, before continuing further surgeries.
Your "guinea pig" friend, bob
PS: I would fire the doctor that does not like our support group!
Thanks Bob.
I am looking into a pain specialist here in Indy. I believe I have many options before I let someone implant wires down my face and neck.
I only worry about trying to have babies someday. Lord knows babies don't like Vicodin.
I will not be going back to the doctor who told me not to listen to my friends. He also is the man who said, "The problem is, you don't have TN." I almost punched him.
My neurologist here is great, however.
Have you head of MVD damaging the nerve? Or having a worsening affect?
Yes, Tammy... MVD in some patients can damage the nerve. The distinguishing factor seems to be excessive physical manipulation during the exploratory phase. That said, in an experienced surgical team, initial success rates with Type I TN are on the order of 90-95%
FYI, the Facial Pain Association has a member of their medical advisory board in Cincinatti. Dr. Tew is a very competent guy with decades of experience in issues such as yours. The consult may be worth the travel. Look him up at http://www.fpa-support.org
Regards, Red
thanks.
is there any truth then, to the fact that I should have never been advised to have MVD?
The neurosurgeon here said immediately, that because my pain was burning...surgery would not help.
I am willing to travel anywhere. Cleveland was further than Cincinatti will be. Only this is all out of pocket currently. I have a very high deductible, but I guess now tha t I have started, I need to use it before Jan. 1.
Thanks for the suggestions.
also, any advice on a pain block?
and i posted about lyrica in another forum.
i have a script but it is $722.
out of pocket.
does anyone know where to get a discounted price? maybe from the company itself?
Thanks.
Hi Tammie,
I'm just curious...are you seeing Dr. Lee at the Cleveland Clinic?
Jamie
Odds of MVD success are lower with ATN than with TN. Unless your pain first presented as the typical stabbing electric shock pattern, most neurosurgeons would resist the use of either MVD or the destructive surgeries like Gamma Knife or Rhizotomy. Although Tew is an expert neurosurgeon, he is well familiar with the full range of alternatives.
FYI, while various forms of nerve blocks have been tried for many patients and have been successful in the short term for some of them, procedures in this family don't have a good record for long-term relief beyond a few weeks at most.
I answered your question on Lyrica in the other thread. See http://www.lawhern.org/Free+LoCost.html
Regards and best,
Red
hahah. how did you know?
what was your experience?
jamie leigh said:
Hi Tammie,
I'm just curious...are you seeing Dr. Lee at the Cleveland Clinic?
Jamie
thank you, red.
grateful for your knowledge.
maybe i should have signed up months before i let them convince me to do the MVD.
then i would have listened.
Richard A. "Red" Lawhern said:
Odds of MVD success are lower with ATN than with TN. Unless your pain first presented as the typical stabbing electric shock pattern, most neurosurgeons would resist the use of either MVD or the destructive surgeries like Gamma Knife or Rhizotomy. Although Tew is an expert neurosurgeon, he is well familiar with the full range of alternatives.
FYI, while various forms of nerve blocks have been tried for many patients and have been successful in the short term for some of them, procedures in this family don't have a good record for long-term relief beyond a few weeks at most.
I answered your question on Lyrica in the other thread. See http://www.lawhern.org/Free+LoCost.html
Regards and best,
Red