Atypical TN...really?

General General TN & GPN (Old Site)
21

Stef and others: I have posted the following material to the Cleveland Clinic feedback portal this evening:


I write to request that you convene a practice review committee to revise material presently offered at http://my.clevelandclinic.org/services/surgical_treatment_for_headaches/ns_overview.aspx . Lumping together of threads pertinent to multiple neurological and neuropathic pain syndromes makes for a hodge podge. Moreover, commentary offered on so-called "Atypical Facial Pain" (AFP) is both inaccurate and potentially harmful to patients.

AFP is not a valid medical entity but rather a diagnostic label by reduction -- equivalent to "be damned if I know" on the part of the assigning physician. While all forms of facial pain tend to be co-morbid with depression and anxiety, AFP is neither more nor less so than iatrogenic facial neuropathy, Eagle Syndrome, or Atypical (Burchiel classification Type II) Trigeminal Neuralgia. The term is (thankfully) falling out of medical usage due to its recognized imprecision, and its improper association with psychosomatic syndromes.

Cleveland Clinic can do better than the partially inaccurate mess you have created on this referenced page. Please make it a priority to reorganize and revise the material to address a more precise standard of practice.

Sincerely,
Richard A. Lawhern, Ph.D.,
Resident Research Analyst
http://www.livingwithtn.org

Stef said:

http://my.clevelandclinic.org/services/surgical_treatment_for_heada...

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
22


Richard A. "Red" Lawhern said:

Stef and others: I have posted the following material to the Cleveland Clinic feedback portal this evening:


I write to request that you convene a practice review committee to revise material presently offered at http://my.clevelandclinic.org/services/surgical_treatment_for_heada... . Lumping together of threads pertinent to multiple neurological and neuropathic pain syndromes makes for a hodge podge. Moreover, commentary offered on so-called "Atypical Facial Pain" (AFP) is both inaccurate and potentially harmful to patients.

AFP is not a valid medical entity but rather a diagnostic label by reduction -- equivalent to "be damned if I know" on the part of the assigning physician. While all forms of facial pain tend to be co-morbid with depression and anxiety, AFP is neither more nor less so than iatrogenic facial neuropathy, Eagle Syndrome, or Atypical (Burchiel classification Type II) Trigeminal Neuralgia. The term is (thankfully) falling out of medical usage due to its recognized imprecision, and its improper association with psychosomatic syndromes.

Cleveland Clinic can do better than the partially inaccurate mess you have created on this referenced page. Please make it a priority to reorganize and revise the material to address a more precise standard of practice.

Sincerely,
Richard A. Lawhern, Ph.D.,
Resident Research Analyst
http://www.livingwithtn.org

Stef said:

http://my.clevelandclinic.org/services/surgical_treatment_for_heada...

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
23

I don’t know if my other reply went through…he did my MVD. He told me there was no such thing as ATN, told me not to read anything on the internet and told me he saw the compression on my CT. I had the MVD with no compression found and have had many, many problems since then:(



misstammie said:

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

24

Steph,

The article reads exactly as I was told at the clinic.

The simulators aren't FDA approved yet, for the face,

but the Dr. I saw has done about 50. *I believe 3 were "unsuccessful, less than 70% pain relief.

I am still willing to try more meds,

but like I said to Bob, I want my life back...I want children, a husband,

and to finish master's degree. I can't start on that list until I'm off medication.

After my MVD my ears have a constant ringing, I'm on narcotics all day,

Every time I bend forward, at the neck, I get a migraine,

I can't handle loud noises....

I almost cry when I get mad at my niece for screaming with excitement in my ear.

I don't care what they call it, but I would like to speak to someone who treats it as the disease it is.

I am tired of feeling like doctors are reciting a memorized statement, or a personal philosophy rather than listening to my symptoms.

I understand the disgust on your side, (and mine)

but I think I don't understand the big deal between terminology.

I think it is what it is, no matter what it's called.

I just needs to be "called" one thing.

The part referring to the anti-depressants; I'm sure you are aware,

they are used to treat several types of nerve diseases. I don't think

they are assuming that those with ATN are especially in need of a mood

stabilizer. My mother has severe nerve damage from a right lung removal,

and the nerves on her ribcage and in her abdomen burn all day. She is taking a medicine

that was used to treat depression but is now used to treat nerve disease and it is the only

thing that gets her through the day.

Have they ever replied to you? i would be interested to see what they have to say.

Gotta get to bed.

Goodnight Friends.

Tammie

25

Jackie,


Thank you for the message. I appreciate any advice from someone who is living it, or has experienced it via a family member or friend.

thank you for the advice. I don't think I will ever cut the nerve.

Tammie


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

26

Tammie,

I do not negate the fact that anti-depressants may be helpful to some in the treatment of neuropathy. I’ve tried them myself, Cymbalta and Amitryptiline, specifically, in hopes that they may help. It is suggestion that Type II TN is of a psychogenic origin, or that the pain may stem from depression that I take issue with. There is no clinical evidence of this.

Personal Note: As I have stated numerous times in different ways, upon the onset of my first symptoms, back in 2003, my world was a very bright one! I was a very happy, accomplished and fulfilled individual, surrounded by people I loved. I adored my friendly co-workers. I considered them friends with whom I shared mutual respect. I had the most enjoyable job ever, for me. I had more going for me than at any other point in my life at the time when this monster first reared it’s ugly head in my life.

Pain this severe, with symptoms this consistent from patient to patient, which follows the pathway of the Trigeminal Nerve is neuropathic pain of that nerve is a very serious issue which needs to be more thoroughly addressed by the medical community.

The reason why it is important to differentiate between the term “Atypical Facial Pain” and Type II, or Atypical Trigeminal Neuralgia comes down to more than semantics in the big picture.

Atypical Facial Pain is non-specific, vague and could possiblly even refer to pain which does not originate from the Trigeminal Nerve. Type II Trigeminal Neuralgia is actually the term which I personally prefer, even over the term Atypical Trigeminal Neuralgia, because it puts the urgency of our suffering on a more equal footing in the with those who suffer from Type I TN.

I would not care what they called it either, if I did not believe that the verbiage did not affect the quality of care Type II patients receive by undermining the seriousness and specificness of the condition.

You may have spoken with patients here or elsewhere, I know I have, who are in desperate situations due to their Type II pain. Children, young mothers and fathers who need to provide for their families, and young women like yourself who want to start families, all being hindered by this chronic pain is heartbreaking to me.

Being a former Medical Transcriptionist, who studied medical terminology, I am certain that the term “Atypical Facial Pain” does not correctly describe this from an anatomical standpoint. If the pain follows the path of the TN Nerve, it is more than “Atypical Facial Pain”, it is Type II Atypical Trigeminal Neuralgia.

Type I patients can be more successfully helped by procedures such as MVD. I am concerned that Type II patients are not receiving the attention which may lead to the research and possibilities modern medicine may have to offer if we are simply termed as having “Atypical Facial Pain”.

Please understand that I am not lecturing you. I sympathize greatly with your pain, the sadness that you feel because you get mad at your niece. I have an 8 yr. old little girl who is a bundle of energy, and is a ball of excited enthusiasm about life! I hate that I am irritable with her when she does the same thing your niece does at the end of the school day, when I am usually having a flare-up.

I agree with you, this condition needs to be called one thing.

Yes, please do not think I am on a soapbox directed at you, It just so happens that this discussion touches on a topic which is very important to me. In fact, I began a discussion earlier this year specifically addressing “Atypical Facial Pain vs. Atypical Trigeminal Neuralgia”. I followed it for a long time and what we found is that this misdiagnosis is a common problem. The replies are still coming in, but I believe it has come off topic now, and become a thread of exchange on all sorts of issues. That’s ok. Exchange of ideas, info and support for one another here, in whatever forum, is a good thing.

I am ever thankful to Red for succeeding many times in setting the record straight with people who write about and treat ATN Type II, as I am still raising my children while dealing with chronic, daily pain. He has the credentials and resume to be listened to, and does the work that my current situation does not allow me to do.

He uses the phrase, “Giving Something Back” on his website, and he truly does. I am abundantly grateful for his efforts.

Thank you for drawing this very important issue to our attention once more.

I’ve gotta get some rest myself now.

I hope that you find the compassionate, informed and effective medical care that you deserve very soon.

Your friend,

Stef

27

Wow! That was a long post. LOL! I’ll just let the National Pain Foundation do the talking for me:

http://www.nationalpainfoundation.org/articles/820/definitions

“Atypical facial pain is a confusing term and should never be used to describe patients with trigeminal neuralgia or trigeminal neuropathic pain. Strictly speaking, AFP is classified as a “somatiform pain disorder”; this is a psychological diagnosis that should be confirmed by a skilled pain psychologist. Patients with the diagnosis of AFP have no identifiable underlying physical cause for the pain. The pain is usually constant, described as aching or burning, and often affects both sides of the face (this is almost never the case in patients with trigeminal neuralgia). The pain frequently involves areas of the head, face, and neck that are outside the sensory territories that are supplied by the trigeminal nerve. It is important to correctly identify patients with AFP since the treatment for this is strictly medical. Surgical procedures are not indicated for atypical facial pain.”

28

wow.

29

Tammie,

I'd like to talk further on our experience with the same doctor. We have more than that in common...I'm a teacher also. I'm only able to work half days this year though. It's been a rough two years!

Jamie