ATN Chat

Interactive Chat Session on Atypical Trigeminal Neuralgia

R.A. "Red" Lawhern, Ph.D
Stefanie Poulton
Gloria Erikson
Jackie Cornfield

Document current as of September 25, 2011

 

In mid-August 2011, Living With TN hosted a two-hour on-line session in its chat room, with a chosen focus on Atypical Trigeminal Neuralgia.  The session was moderated by R.A. "Red" Lawhern, Ph.D, Stef Poulton and Gloria Erikson, coauthors of the Face Pain Info tab on our site menus.  Red serves the site as a resident research analyst and moderator.  Stef and Gloria are long-time moderator/administrators who have created multiple services and forums here. 

 

In what follows below, the reader should understand that what you are seeing is a "polylog" -- a group conversation that includes a number of divergent threads and cross-threads.  At the peak of the session, we had 32 people engaged at one time. Hopefully the recorded transcript is not too confusing or disjointed. 

 

The intention in posting this transcript is to empower readers to help themselves and others in similar interactions.  We hope to host more chat sessions from time to time at Living With TN, with other subject focuses. We encourage readers to contribute both at this site and at any others with which you are familiar.  Your experience and thought are important to chronic pain patients who often feel that they are alone and ill-served by the medical community.  

A special thanks goes to Jackie Cornfield who volunteered to transcribe the screen-captured video of this session into clear text.  Any remaining errors of construction are those of Red, the primary editor.

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Jackie: yes I shall observe I do not have enough knowledge.

Paula: Gee I hope knowledge isn’t required LOL

Paula: Red are you on line?

Red: Jackie don’t downplay your knowledge. I’ve read too many of your supportive postings. It’s an open forum to feel free to add your two bits.

Red: Yes Paula

Jackie: only from Red gloria and Stef

Paula: Red I don’t know if you are aware, but I had MVD on July 21^st by Dr Jack Wilberger (on of Dr Janetta’s assistants). Are you Familiar with him?

Angela Filewood: I figure support is support; you don’t need knowledge to let others know you care and are there for them

Red: with Dr Janetta before he retired, yes. With Wilberger, no

Paula: I have been told the surgery could take time for relief—the trigeminal nerve is still inflamed and that’s why I am still having episodes.

Amy Culpepper Elliott: I am having surgery Sept. 29^th with Dr Babu. Getting everything ready now-flights, hotels etc

Red: Note to all: I can see one convention that might be helpful. If we get multiple threads going here, then it would be a good idea to start a response with the name of the person we are responding to.

Paula: Amy where is your surgery going to be held

Amy Culpepper Elliott: NYU

Paula---Amy where are you from? How long will you be in the hospital?

    Copy txt missing

Paula---Amy what are RFL’s?

 Amy Culpepper Elliott: radio frequency lesioning

 

14.00 official start of session

Red: All welcome to The Living with TN chat. It is now 14.00 hrs EDT. For the next two hours our primary focus will be Atypical TN, although smaller issues peripheral to ATN are fair game. The format is facilitating Q&A. I’ll moderate with Stef and Gloria

Gloria E: COMMUNITY CHAT ON ATYPICAL TN BEGINNING. RED LAWHERN MODERATING CHAT.

Red: G-Fierce -- Great minds keyboard alike.

Red: As a start, we can introduce ourselves. Where are each of us geographically?

Amy Culpepper Elliott: Alabama

Gloria E: Chicago IL

Paula: Hi, I’m Paula and I live in Beaver, PA about 40 min from Pittsburgh

Sheila: Hi All

Stef: Northern TN

Deb S: Toronto, Ontario Canada

Jackie: Jackie UK

Sheila: Alberta, Canada here

Red: Lis: are you still about?

Amy Culpepper Elliott: Red and Gloria. Where are you located? I forget

Gloria E: Any questions for Red

Gloria E: Amy I’m in Chicago

Red: I’m in South Carolina near Charlotte NC

Paula: Paula here, just wanted to ask red if it’s normal for me to have mild symptoms after MVD surgery-had it on July 21

Red: “normal” and TN are an oxymoron

Andy Anthony: from Austin, TX

Sheila: Oh Paula that’s very recent. I’d think you are still recovering.

Gloria E: Paula are you Type 1 or Atypical?

Stef: Can I assume everyone here is a Type ll, Atypical TN patient?

Red: However, it’s common enough for TN symptoms to linger for a while—and regrettably not all MVD is fully successful.

Paula: Gloria, the doctor found a vein near the trigeminal nerve as well as arteries so I would assume its ATN

Sheila: Gloria, long time no contact ((hugs))

Stef: Type l or Type ll would be determined by the symptoms, Paula.

Red: Paula the structure of the veins and nerves doesn’t determine ATN. The kind of pain you have does.

Andy Anthony: I am both and more apparently according to my Neuro.

Gloria E: Paula, what are your symptoms? Shocks or burning?

Andy Anthony: yes to both

Andy Anthony: and more

Andy Anthony: if talking to me

Paula: Gloria: both! I have burning in the side of my temple and shocks in my cheek

Andy Anthony: sorry, maybe someone else’s conversation

Sheila: I had a dream about this chat today. Strange, then the pain woke me up. Lol

Paula: Andy – I’m sorry—you sound like you have some suffering!

Stef: Ok, some of us have Type l and Type ll symptoms. Like Paula

Gloria E: Andy this is a mass chat so feel free to jump in.

Sheila: Andy I’m sorry you have multiple neuralgias. I dreamed I had that and it was horrid!

Paula: Gloria, the twinges I’m feeling only occur when I eat. However- and I think this is interesting: after I spend several hours working on report, etc. that are intense, that’s when the burning in my temple occurs at night-it wakes me up

John Quill: Took several attempts to get in here, but finally seems to be working….

Deb S: Paula and Stef, with symptoms which are generally on one side of the face and sending shocks from the nerves at the upper and lower gums- would you think Type I or  ll?

Sheila: Hi John

Red: Question for all: is anyone uncertain of the difference in symptoms of Type l and Type ll TN?

Daniela: can somebody tell me what are the symptoms of ATN ? And what’s the difference between typical and atypical TH?

Red: Bingo

Stef: Deb, I am no doc, but I would think, Type l.

Paula: Red, please explain

 Sheila: Red, looks like some are not sure.

Red: Following note especially for Daniela

Red: Type l (Typical) TN is characterized by volleys of electric-shock stabs.

Red: Type ll (Atypical) has a more boring, aching character and is more constant than Type ll

Red: Does everybody see the distinction?

Paula: Red, yes, I see the distinction and aren’t we the lucky ones that have both!!!

Gloria E: (((Jackie would you please count members here for later use. Just how many- not names?)))

Red: My spouse does too. Many people do

Andy Anthony: well I do, since I feel both sometimes during the same day, very frustrating

Sheila: Also Type 1 can last just a few seconds

Red: Agreed, Sheila

Stef: absolutely, and my question is have there been any studies to indicate MVD can be of any benefit to a strictly Atypical patient.

Stef: Red?

Red: Stef, this is going to take a few rounds…

Stef: I haven’t found any

Paula: Sheila, I’ve had an attack from Type 2 last as long as 45 min and it was paralyzing

Gloria E: Thanks J

Sheila: yes type 2 can be never ending. That’s one big diff from type 1

Daniela: for ATN is it possible for the pain to go below the chin…for example neck...hand?

Andy Anthony: have had same occasions, one lasting over an hour, stopped checking when it finally subsided I was just relieved for the break

Sheila: mine does Daniela

Daniela: cos I have pain in the neck area and arms sometimes

Red: Daniela, if your hand hurts, something other than TN is happening

Stef: would that not be Glossopharyngeal, possibly in the neck?

Daniela: not hands I mean neck and shoulder

Daniela: I’m sorry

Sheila: My TN does get bad enough to shoot to my upper chest, but then I have heart problems too.

Stef: I wonder how many here have strictly Atypical Trigeminal Neuralgia, and are sure of that fact.

Sheila: I’m sure

Red: Neck and shoulders are still not TN. Possibly not Glossopharyngeal either, Might be”referred pain”.

John Quill: It seems to me that the diagnoses are “evolving” but Type 1 is better defined, while Type 2 is more varied symptoms. For example, my attacks last from 2 to seventy two hours, but it’s more or a dental like or ‘aching’ pain not as acute as Type 1

Amy Culpepper Elliott: I agree with referred pain, Red

Sheila: yes Red, mine is referred pain, hurts so bad the pain makes other things hurt.

Red: John, you are correct: diagnosis and standards are indeed evolving.

Paula: John I agree with the type 2- had a tooth extracted for no good reason

Maggie Armour: does anyone know of a definitive test for telling whether the pain is dental or neuralgic when it is located to one tooth only (at a time)? E.g. if responsive to Tricylclic anti-depressants, or could a tooth which is infected also respond to this drug

Gloria E: I have bilateral ATN jumping sides for the past four days.

Sheila: Yes, almost all of us had unnecessary dental work

Amy Culpepper Elliott: Daniela, sometimes my right arm will hurt or feel tingly with a severe attack

Stef: Type ll has not been deemed” less acute”, just different.

Stef: the pain is constant, nagging, searing, burning, crushing, etc.

Red: Okay, guys… here’s where I “moderate” a little. Could we have a minute of focus on Maggie’s question? I think it’s important.

Judith: does anyone else have severe tightness in teeth along with burning sensation on one side only

Paula: Maggie, the only medication that gave me a little relief (initially) was tegretol (tegretol). I took doses of aleve, advil, Tylenol- nothing touched the pain-none of these meds will

Daniela: is not like the fain (pain) I have to my face but sometimes I have the feeling that the pain goes to my neck and arm

Stef: Yes, Judith. That is how mine began. But, Red is replying to Maggie. Thanks

Red: Dental pain—especially if it shifts from tooth to tooth—is sometimes called typical odontalgia. The label may not be very helpful. It’s best regarded as a specialized form of peripheral neuropathic pain.

Red: An infected tooth is very unlikely to respond to antidepressant meds.

Gloria E: Maggie, does that answer your question?

Maggie Armour: Yes I have been reading about this and understand that it can mimic tooth pain even to the extent of pain on heat, cold, pressure…just wondered if anyone knew of any way of telling for sure!! Thank you all.

Red: there are no definitive tests for either type of TN

John Quill: Next month it will be 39 years for me (since Sep 1972). If anyone, especially teens, are in crisis NOW, I want to tell you, you WILL get better at MANAGING this. I will try to help with any questions.

Red: Diagnosis is always done primarily on presentation and medical history

Maggie Armour: Thanks Red.

Paula: John, 39 years??? What have you done to treat your symptoms?

John Quill: Name it, I’ve done it.

Paula: John, MVD?

Stef: John, what are your symptoms?

Gloria E: Judith, yes, there is tightness and burning on one side unless you’re bilateral as many of us are… then it switches sides.

John Quill: Don’t want to take up space here, my profile has description, forty years is a long time!

Red: John, MVD? And when?

John Quill: No. not MVD but But yes, I’ve had an unnecessary c-spine op in 1992, and lots of dental work.

Stef: OK, John, simply put, are you an strictly atypical?

Red: longer note follows

Red: a history of dental work would suggest you might have “symptomatic” TN, rather than “atypical” TN. Symptomatic TN has discrete causes in mechanical or surgical damage,

John Quill: I would say definitely Type 2, with migraines as well (common and classic) since onset. Nerve pain is always R sided and mandibular nerve.

Andy Anthony:  Has anyone here had TN for more than 20 yrs?

Gloria E: Judith… did that answer your question? Feels like one or all teeth on one side are in severe pain???

Paula: John, Red: I was told by Dr Willbererger that MVD is the gold standard in treating TN and ATN>

Sheila: 23 years here

Stef: Ok, Red. I believe this leads to my question.

Daniela: I have a question because I’m still confused… I was diagnosed with ATN and sometimes the pain switches sides and I still don’t get if it’s normal for ATN to also feel some pain in the chin or arm/shoulder?

Red: Paula: TN yes, ATN only sometimes

Stef: Paula does

Judith: yes and my eye waters and left side of tongue stays numb.

Paula: Stef, no, I don’t have bilateral (thank god- my heart goes out to those who do) and my pain is located in the left side of my face/

Gloria E: Daniela…sounds like you’re bilateral, it switches sided.

Red: Daniela—pain in the chin is still probably TN (the nerve serves that part of the face). Pain down in your neck is more likely “referred” pain due to muscle spasm or reaction of some sort. It’s less likely to be nerve pain from neuropathy as such.

Red: Stef—your question was?

John Quill: Can we agree: the first twenty years is the hardest :-) It’s hard for people, even doctors, to comprehend 39 years. My attacks began during Watergate. They were still building the World Trade Centre. American Pie was on the radio. It’s a LONG AGO!

Daniela: yes I agree that is my idea too…but I went to see a neurosurgeon at Duke Institute a few weeks ago and he was telling that you’re feeling some pain below the face that’s not TN.

Red: Daniela, that’s basically correct.

Andy Anthony: damn John, and holy crud, that is way too freaking long

Stef: Has there been any research, thus far, indicative that MVD can possibly be beneficial to Type ll patients, and I take from your answer to Paula, it’s a “yes”.

Paula: John, I don’t know how you have managed? Why haven’t you considered MVD rather than suffer-I was told MVD is the gold standard.

Red: Let me take on Stef’s question, if I may. Relates to Paula too.

John Quill: No doctor will do either MVD or Gamma Knife on me, believe me, I have asked and had 6 MRI’s

Red: I hope shortly to be writing another article for Living with TN, as co-author with a neurosurgeon, to address just the question Stef has posed.

Red: But here’s what I know now

Stef: Andy, there is no restriction here in this chat on length of Q&A. Thanks.

Rick Smith: hey gang!

John Quill: that is none of the core issues with Type 2 or ATN, they often cannot find anything that an operation will be successful

Red: There are papers which reveal positive benefit for ATN in restricted circumstances.

Red: VERY restricted

Gloria E: I don’t buy the “gold standard” statement. I’ve had two MVD evaluations and both neurosurgeons, refused to do it because I’m Atypical.

Red: specifically, if you have constant ATN pain only in the second branch of the nerve, then there may be positive benefits.

Red: Likewise, if your pain first emerges as Type l and then evolves into a mix of Type l and ll, then MVD may offer benefit.

Sheila: MVD patients have many complications and it doesn’t help all. Some have it multiple times.

Jackie: which is the 2^nd branch Red?

Stef: I meant the length of which someone can type a statement, not our timeline, Red.  Thanks for the answer.

Judith: my pain has been progressing for last month was changed 5mg to 10mg of oxydone. Was wondering if anyone took a higher dosage.

John Quill: But see, 20 years ago, I finally asked long and hard enough, and found a doc to open my c-spine, and it lead to disaster, loss of marriage, house, job, career. I am a bit afraid of “begging” for MVD, esp. when they say it prob. won’t help.

Amy Culpepper Elliott: Red, when you can change the subject, my husband just asked why the heat makes the pain so much worse, With the heat index so high here, I’m getting much more pain even if I don’t go outside.

Red:  second branch serves the area around the eye and cheek.

Stef: 15mg. Oxycodone w/o APAP here, Judith

Paula: Red let me understand you more clearly-if the pain is from the second branch will MVD help with ATN?

Sheila: Judith, I’m on morphine. Much stronger than Oxycodone.

Andy Anthony: Red, what are the possibilities that a second MVD would help if the pain from the first one comes back and worse? I had my MVD 6 years after the pain started and I was pain free for exactly 2 yrs and it came back even worse

Rick Smith: 60mg Oxycodone daily and 180mg oxycontin daily

Stef: I’m on morphine as well, but it does not help as much as the Oxycodone.

Paula: Stef, Sheila- Rick-how do you function on such powerful pain killers?

Andy Anthony: does morphine actually remove pain or makes it where you just don’t care dopey feeling

Stef: Paula, tolerance builds with time.

Rick Smith: your body get used to it after a while

Red: Guys, we’re up to about four threads now. It’s getting harder to sort answers. May I respond to Andy?

Sheila: Yes, I am more alert on the meds than with the pain.

Rick Smith: I didn’t start out on that much

Rick Smith: please

Red: Andy: morphine generally” quiets” the nervous system, but it doesn’t interrupt the sodium channel in nerve pain—just dulls it.

Red: As noted, tolerance builds over time to morphine and opiates

Andy Anthony: ok, ty, and from the question prior to that, about MVD?

Red: However “drug cravings” are almost unknown in pain patients.

John Quill: I just want to be accessible if anyone is ever in a CRISIS, especially children. I have lived through this, from my teens into my 50s and this monster CAN be managed. So do NOT give up!

Paula: John- what I am seeing (and this is for all) we are so eager to participate, share and seek relief. I can see why this is called the “Suicide Disease” but not sure how I can manage if the MVD has failed. What will I do?

Jon Quill: You will do like me.

John Quill: My surgeries have failed, and that was two decades ago.

Stef: Paula: what else have you tried in way of medication?

Red: Suicide disease is an unfortunate label. It does not need to be your reality, Paula.

Sheila: Paula, there are so many different meds that you can ask your doc to combine different combos until you find what works for you.

Red: Agree with Sheila

 

Apologies:  approx 1 minute of text missing from screen capture

Unknown: So sorry Paula

John Quill: I do identify with the term “suicide disease” and was actually comforted to finally read that phrase once the internet was available. Before 1995 it was SO DIFFICULT to learn ANYTHING!

Red: Paula. I’m surprised a neurosurgeon would do the MVD that soon after a glycerol.

Paula:  Red: I encouraged it, admittedly

Gloria E: Paula… MVD isn’t always successful. There’s no guarantee especially for Atypicals.

Paula: Gloria, what happens if MVD fails for Atypicals?

Daniela: Richard, to get it right… if I have all the symptoms of ATN, switching sides but also some pain in the neck area only on the left side where the pain is always worse, do I have ATN plus referred pain due to muscle spasms or reaction of some sort?

Red: Daniela “probably” yes.

Andy Anthony: red, what are the possibilities that a second MVD would help if the pain from first one comes back and worse? I had my MVD 6 years after the pain started and I was pain free for exactly 2 years and it came back even worse

Gloria E: Paula that would be a question for Red. I have not had MVD and will not have it.

John Quill: I live near Buffalo, and have looked into Roswell; I understand Pittsburgh does quite a few MVD ops. What cities are the “top” facilities and docs located in?

Paula: Andy-OMG – I had no idea that could happen.

Daniela: Thanks Richard

Red:  Andy, many patients are successful on a second MVD.

Paula: Andy-do you have ATN? I’m going to be 68 and would hate to think about going through this when I’m older

Red: Odds aren’t quite as good as when MVD is used as a first procedure before any other is used.

Andy Anthony: I had no other procedure before MVD

Paula: Red what do you mean?

Red: Sheila, in proper hands, the success rate for MVD is over 90%

Carole: HELLO EVERYONE! Glad to join you, hoping to gain as much information as I can to help my mom. Her next appointment is Friday with the neurologist.

Red: For Type l patients

Judith: Is there any combo of drugs that is really helping anyone’s pain. I have Dr Appointment Fri. and I am getting desperate for relief

Sheila: Then there’s a LOT of people on LWTN who were not in the right hands.

Paula: Red, are Type ll patients “Doomed”.

Stef: Red, clarify the 90%, for all, or Type l?

Rick Smith: Hello Carole-nice to have you here

Paula: Red, are Type ll patients “Doomed”?

Red: 90% for type l.

Daniela: my doctor said that MVD will not help me because I have ATN….are there any procedures for ATN that could help?

Red: All: may I take the podium for about 5 minutes?

Rick Smith: yes

Red: About MVD and ATN

Andy Anthony: I have read many articles that other patient’s pain re-occurred after surgery within hours to years and in almost all cases felt worse than before MVD, I am not trying to be dejecting, just stuff I have researched

Red: In the process of updating our face pain info page to include new data.

Andy Anthony: some had multiple MVD and still suffer

Sheila: Judith there are so many different anti-seizure meds, and the newer ones, along with muscle relaxant and pain meds work well for some, but every person seems to react differently, hence, different combinations. Trileptil is one I’ve heard a lot lately.

Red: Let’s do MVD first

Stef: Red asked for the podium for 5 mins. Thanks everyone.

Gloria E: Everyone please… Give Red about 5 minutes.

Andy Anthony: sorry

Red: MVD has never had as a high success rate for ATN as for TN. It has been over-advertised, I believe. But for one class of patients, it is definitely helpful.

Red: Type ll patients, who have a strong element of Type l (electric jab) pain, frequently get relief of both the Type l and at least part of the Type ll pain after an MVD.

Red: However

Red: Patients, who START as Type ll, generally don’t do as well with MVD. Some neurosurgeons now believe that those who start as Type ll should have no surgeries at all. Especially the destructive ones.

Red: That means the alternative is medication.

Red: I release the podium.

John Quill: I think it’s important to find out if your pain is responsive to opoid medications, and if it doesn’t respond well, to make sure your treating physician will provide them for you.

Red: As one element of total pain management, I would agree John

Paula: Red, I tried Tegretol and neurontin and neither worked (tegretol did for 9 months. Now do I resort to opiates? How can I function? I work and need clear thinking

Sheila: So many people are scared to death of the stigma of opiates and avoid them at all costs.

NickyD: Are any of the so called alternatives worth a go? For instance acupuncture?

Andy Anthony: well I think that I had both from the get go, but mostly Type l, I as finally diagnosed at Type two later after MVD, which is odd

Amy Culpepper Elliott: John, what I (am finding is that they don’t work as well anymore. Either my pain is worse or I’m getting resistant

Sheila: Paula, try Trileptil, a newer drug.

Red: Paula: Has anybody tried Trileptil, Baclofen, the tri-cyclic antidepressants, Lyrica or others?

Gloria E: Red… I think a lot of members here don’t know about surgical complications like cerebral spinal fluid leaks and meningitis.

Sheila: acupuncture helped me for a while

Amy Culpepper Elliott: Lyrica, reduced it by about 50% in the beginning

NickyD: I’ve heard good things from a work colleague but she is standard TN sufferer

Daniela: I tried Baclofen, the anti-depressants

Min C: Wow Rick you got the good stuff! LOL

Andy Anthony: If you go to a cervical/neck specialist, the avg acupuncturist has not clue and has not helped ever

Rick Smith: J

Sheila: Yes, I reacted badly to tricyclics and Lyrica, Baclofen was helpful.

Daniela: and now I’m taking Oxycodone and Lyrica because the others didn’t work

Andy Anthony: same for me with Lyrica

Judith: Lyrica did me no good actually got worse

John Quill: I also find relief with acupuncture, and learned (after many years) to do this on myself. I began in 1987. It has reduced my need for opiates quite a bit. In 40 years, you do whatever you can!

Deb S: I am on a combination now of Tegretol and Lyrica.

Andy Anthony: but as time goes I keep upping my dosage

Sheila: Yes John I was taught to do acupuncture to myself or it would be too expensive.

Amy Culpepper Elliott: I take Oxycodone as well, tramadol and tegretol

NickyD: Good to know that it works for some people

Gloria E: CAN WE STOP FOR A MOMENT AND ADDRESS SURGICAL COMPLICATIONS??

Paula: All: this is very disheartening

Rick Smith: I want to try Lyrica-for those of you that take it is it prescribed by your neuro or PCP

Red: BREAK BREAK—How many of those now in session have read the Face Pain Info tab on your menu? Just enter a carriage return in the text window

Andy Anthony: crud, I miss read the question, I was talking about chiropractors not acupuncturist. My apologies

NickyD: My apologies, new to the site and catching up with what I can

Red: Okay, How many of those now in session have read the Face pain Info tab on our menu? Just enter a carriage return in the text window

Stef: Y

Judith: Y

Amy Culpepper Elliott: n, sorry

Red: I’m seeing 2 out of 27 so far… Anymore?

Rick Smith: Y

Tomey: Y

Carole: Y

Paula: Not yet!

Maggie Armour: Y

John Quill: if you just press return no text appears, Red LOL

Andy Anthony: Y

Sheila: Awesome site! Didn’t even see it!

SF Bill: Y

Red: About half or a little more…

Red: Okay: as a follow-up, that reading is commended. Meantime may I offer some thoughts on surgical complications?

Sheila: Looks like you three really worked together well.

Stef: please do

Red: Anyone for surgical complications?

Red: Okay

SF Bill: I recommend signing into the facial pain association on our resource page lots of info... Check upcoming conference in Irvine California

Red: About 15% (if I recall correctly) of MVD or Rhizotomy patients experience a serious or long lasting side effects.

Red: Some as follows

Red: CSF leak, facial numbness, Anethosia delorosa, hearing loss (rare), loss of tearing reflex of the eye (leads to ulcers).

Red: None of these are trivial

Red: Many are less likely with a team that does a 100 procedures a year

Red: Gloria, can you add here?

Red: ?

Carole: Richard of that 15% how many have the atypical?

Red: I don’t have the split. But I can tell you that overall, ATN patients don’t have as many MVD’s and don’t do as well when they do.

Min C: I have tried Baclofen and Lyrica and Gabapentin.

Gloria E: our moderator Laura recently had MVD and suffered severe cerebral spinal fluid leak and life threatening meningitis… and she’s Type l.

Daniela: me too

Paula: Red, read briefly the info page and noticed Geniculate Neuralgia- believe I am experiencing this after MVD- is that possible

Red: Yes, it’s possible, Paula

Paula: yes, I’ve noticed this at night, esp when I’m having Type ll attach

John Quill:

In the “Big Picture” of all these new procedures, medications, and even the internet itself is such a great thing to have. All of this was developed in only the last 15-20years to me. And there is always more research.

Paula: Red< yes< I noticed this at night esp when I’m having Type ll attach

Carolina Thatcher: Has anyone experienced facial numbness and if so, can you describe?

Red: Any responders to Carolina?

 

Daniela: yes, sometimes I have facial numbness…it’s only occasional…but I don’t know if it’s from ATN or from air conditioning because I have problems

Daniela: with the air condition

Red: Daniela, the problem could be part of the same ATN patterns

Rick Smith: My answer would be out of scope for this chat session Red

Red: Fair enough, Rick and thanks—please friend one another and follow up off-session

Andy Anthony: May I ask why there is so much focus on Type ll over Type l?

Gloria E: Carolina… I don’t have facial “numbness” but I have a spot on my cheek that feels like a 3^rd degree burn.

Paula: Red, do you believe I should not have had the MVD?

Red: This session is only the first of a series

Stef: ATN is the subject of this session.

Red: Paula: should not have does nobody any good. What’s important is what’s next.

Carolina Thatcher: Does it just feel (like the portion of the face is not there) or does it feel like when you have a dental procedure (numb and fat)?

Paula: Red, OK-what is next? How long should I wait to see if MVD failed?

Red: Paula: most neuros would suggest three months, I think.

Min C: Numb and fat

Gloria E: Andy…this chat session is specifically about Atypical Type.

Andy Anthony: aah, ok, missed that part

Judith: I have no pain when I wake up in the morning. Wonder why?

Amy Culpepper Elliott: Paula, sounds like you have gotten some relief and remember, the nerve is still healing. Give it some time. How long has it been?

Red: Andy… I’ll take suggestions for further chats, by email request…

Andy Anthony: ok

Stef: Judith, I do not either, and I hear that from a lot of ATN patients.

Min C: haha

Paula: Amy, the surgery was July 21- two weeks tomorrow. I thought I would be pain free (but then I tend not to be a realist)!

Carolina Thatcher: Thanks!

Amy Culpepper Elliott: Paula, you haven’t given it a month. Just look at your incision. Just as it is healing, the inside of your head has to heal as well.

Sheila: Paula, any surgery takes longer than 2 weeks just to not feel the surgical pain.

John Quill: I would encourage those who have ATN to keep their hopes alive. Lots of new research is going on, and if I would have known what I can find today would ever exist 20or 30 years ago, I would be so encouraged.

Paula: Amy, good points and the incision is still painful. I don’t have any patience with pain. I want my life back!

Red: Paula, come and talk to me by email when you can. And read the section of the Face Pain Info tab that deals with quality of life…

Gloria E: Red – do you feel that too many neurosurgeons aren’t trained enough to be honest with patients that MVD is not a cure all??

Daniela: I want my life back too, I had to give up going to school, my job… but only God knows if we will get well or not

Paula: Red, I will. There’s a lot more to my “back story” than what I share here – I’ve experienced

Don Vandenack:  I have had facial numbness from the top of my eye through my nose and cheek. Also my cheek is swelled up a lot of the time.

Red: Gloria: some neurosurgeons definitely don’t have a good perspective on where MVD works consistently and where it doesn’t. Not to bad mouth the man, but Janetta may have been one of them.

Sheila: Gloria, I have found so, many doctors willing to do useless surgeries just for the money, not caring how we suffer.

Red: Worse doctors refuse to participate in consensus efforts if the consensus threatens their personal rice bowl! (End of tirade)

Sheila: AGREED

John Quill: What should we do about these “bad “doctors????? Why, are we out live them! That’s what I do! J

Tomey: Is there a person in the entire world that has been cured from ATN??

Gloria E: I think there’s too much confusion with Atypical that they can be “cured” and as Sheila wisely pointed out…some neurosurgeons are more interested in getting experience than what is best for the patient.

Red: You can also report them to practice committees of the AMA and to the State Board of Examiners

Stef: John, are you on opiate therapy?

Judith: Is anyone familiar with work done at Baptist Hospital in Winston Salem NC

John Quill: I’ve used opiates for severe pain since 1972.

Red: Tomey, some, yes. Many I’m not so sure. Certainly not a majority. Most are “managed” and many with acceptable quality of life. But a cure still eludes us.

John Quill: But medication is a highly individualistic thing, so I don’t discuss it too much.

 Stef: Ok, for me it’s been between ’09, and it’s the only thing besides Neurontin which helps. Thank you.

 John Quill: Opiates can be used safely for years, even decades, and the right dose is the dose that works.

Rick Smith: I happen to agree with you Stef

Stef: Red wrote a great piece on this in the Opiates Therapy group.

Elaine48: Hi, I’m late, what have I missed?

Red: Elaine if you can see the chat history, you’ll be able to catch up.

Gloria E: Elaine… you can scroll up and read from the beginning.

Min C: Well what’s the alternative??

Paula: Stef, where can I read what Red wrote on Opiate Therapy?

Macmama: I agree John, 18 years of various therapies but opiates are the fall back for me.

John Quill: If anyone is ever in crisis because of this illness and the pain it causes, especially children, I am available to listen. I am an ATM patient with 39 years of history, and I’ve lived through a lot.

Gloria E: Min what’s the alternative to what?

Elaine48: I’m using opiates and I think the fentanyl patch is safer than other things. There are few choices.

Red: Paula—ping me by email and I’ll send you an authoritive paper on drug therapies for neuropathic pain.

 Stef: It’s is a “Featured” discussion. If it is not there, I will find it and re-post.

Paula: Stef, thanks-I’ve been looking on the index of the Face Pain Info section.

Amy Culpepper Elliott: Of course, lots of docs say that opiates don’t work for ATN. Most of us beg to differ.

Stef: Red, regarding Elaine’s statement, is it possibly that Fentanyl patches may be safer due to the fact that they may cause less digestive problems?

Red: Amy, for some patients opiates don’t work. For others they do.

Amy Culpepper Elliott: I agree

Gloria E: Amy…agree. The doctors say that don’t know what they’re talking about.

Red: Stef, Elaine: I am not familiar enough with the patch to have a good opinion. Stef please remind me to go dig this out and get back to her.

Stef: Will do

Amy Culpepper Elliott: That is what Dr Tew’s office told me. If they work it’s not ATN. Say WHAT???

John Quill: One of the worst problems with Type 2 is that, by definition, this is an illness that is poorly understood. The “Atypical” term itself often means “We don’t know”. But so much more is known TODAY than yesterday!

Carole: My mom is 74 years old and hasn’t been diagnosed with ATN but she definitely has all the symptoms. Also she has a history of not responding well to medications in general. Do you think age plays a role in a person’s response to ATN medication?

Elaine48: The patch has allowed me to function. I used Kadian and Oxycodone is breakthrough. The patch has no side effects for me.

Min C: If you run out of other drugs to use then use the opiates. I got no problem with it!!!!

Elaine48: May I ask a question regarding other cranial nerves and diagnosis

Paula: All: let me ask a question about opiate drug treatments: are they very expensive? Do ins. Companies usually cover them? I’m on Medicare and do have a supplemental plan

Red: Carole age plays “some” role in response to meds for all types of treatment, not just TN. But some patients are specifically hypersensitive to meds.

Carolina Thatcher: Amy, I think Dr Tew is confusing ATN with TN. Opiates tend not to work on TN.

Amy Culpepper Elliott: I agree. Mt “stabbers” as I call them, nothing helps.

Stef: Medicaid covers most of the expense of my Morphine and Roxicodone (Oxycodone w/ no APAP)

Elaine48: Paula, I have Medicare and a supplementary and they are expensive.

Gloria E: Paula, most opiates have generics and are very inexpensive.

Eaine48: I am referring to newer items-the patch-Kadian

Red: anything you must buy by brand will cost 5-10 times as much as generic.

Judith: I am on Medicare and my Oxycodone is $2

Paula: Red, what kind of treatments has your wife had?

Paula: Judith, thank you

Elaine48: Gloria even the generics for the patch was high as well as Kadian

Red: Paula: started on tegretol switched to Neurontin, has adequate pain management and few side effects...

Stef: She is maintained on Neurontin?

Paula: Red, I never felt that Neurontin helped at all

Macmama: Neurontin caused me to become chemically depressed.

Red: Some people are helped by Neurontin. My wife is one of those it does.

Paula: Red/Stef- I am taking 300mg 3 times a day

Red: Your dose is low Paula. My wife is on 2700mg per day

John Quill: I think the first step is to work with your physician, to see if your nerve pain is responsive to Opiates. The immediate-release morphine sulphate MSIR, as well as the continuous-release, or MS-Contin, are both generic and very inexpensive.

Stef: Neurontin, for me, helps with the burning sensations. I take 400mg. x 3 daily.

Gloria E: I’m on 900mg three times a day.

Elaine48: Red, what caused Paula’s pain if that’s Ok. Is there anything that is a trigger, Neurontin made me fat, so I used a small dose. 600mg a day.

Stef: Good advice John

SF Bill: Neurontin/Lamictal/Oxycodone saved me.

John Quill: Patches (Fentanyl) or Lillipops (Actiq) are very expensive, and can be way too strong (about 100 x stronger than Morphine) and I don’t think they are the place to start.

Elaine: If you are taking a combo of meds, how do you judge what is doing what?

Stef: Oh it does cause weight gain in some people, Elaine. The adverse reactions say it could.

Red: If I may respond to Elaine?

Elaine48: For me, it did. You are cute and thin. I can’t eat in pain.

Red: Combo of meds is normally titrated up gradually, one med a t a time, until a combination is found that works. Normally when one med is added, another will be tapered down. Rare for drug cocktails to employ more than three or four at a time.

SF Bill: Check it out on the internet or the pamphlet supplied by pharmacist

Red: On the internet http://www.rxlist.com

Elaine48: What if you are already on a combo and want to switch. Thanks, Red.

Paula: All: is there any way I can print out this conversation?

Elaine48: It would be great

 Red: Elaine obtain your doctors concurrence on a trial.

Elaine48: What do you mean?

Gloria E: Paula, you can copy and paste and email it to yourself.

Paula: Gloria-thanks

Red: Unfortunately, it looks like copy and paste is one entry at a time.

Red: At least it is for me.

Andy Anthony: Well that sucks, darn it.

Andy Anthony: Some really good information here.

Judith: My triggers are talking, breeze on my face and stress any stress and sometimes no apparent reason. Is this true for you all?

John Quill: For Opiate drugs, they have ‘converters’ that basically use Morphine 10mg as the ’gold standard’. And they base everything around this, it’s very well understood how to switch, and even most Pharmacists can help.

Carolina Thatcher: For months I was on 4800mg of Neurontin until pain came back.

Jackie: I am screen printing all Q&A.

Stef: Most of this information is available on the Face Pain Info tab. If not, Red makes timely updates.

Andy Anthony: Yes and more, brushing teeth, chewing, kissing, you name it, anything that causes my lips to move

Red: Judith your triggers are common. Many people would report the same.

Paula: Judith, talking and eating were my triggers for the Type l, I lost 9pounds in 2 months.

Gloria E: Judith…We can all have similar or different triggers.

Elaine48: Bill, the patch was not first. Kadian was, but it wasn’t enough. What is in the patch exactly? I thought it was Morphine.

Amy Culpepper Elliott: Cold and extreme heat are awful.

SF Bill: next time I’ll have my notebook with me, old fashioned note taking on the fly.

Paula: Andy- you added some valid ones for me as well-including brushing teeth and gargling.

Red: Gang: We’re at 1530hours EDT. In our remaining time today, is there anyone with an emergency information request?

Andy Anthony: Really sucks not to be able to kiss my wife, our romantic part of our relationship is pretty much in the toilet, when the pain is heightened.

John Quill: I think we went from surgical discussion (cures) to medication discussion (management) and believe this was a very well-run chat, thank you Red and Stef and any others who made this happen!

Stef: I understand that Andy, Thanks. John.

Elaine48: In Florida, the contrast between humidity and air makes me feel awful. Will this be done again?

Red: John, we intend to do this again from time to time. Next time I’ll solicit other topics.

Paula: Red, I think this was a wonderful discussion- we covered so much. Please schedule more in the future. This was particularly helpful to me.

Elaine48: Fabulous info.

Andy Anthony: Is there a single or small set of web sites that focus on discussions around what the latest drugs and procedures are and their potential to help as well as side effects?

Red: John, send me an email address. I would like to chat off board.

Stef: Are we wrapping up, or chatting until 4p.m. EST, Red?

Paula: All-we are all so eager for help and relief.

Red: Andy—the knowledge base at the TN association is the closest answer I know to your question

Elaine48: Desperate at times.

Red: All: we’re still here until 1600EDT.

Andy Anthony: And yes, Thanks Red, this is very therapeutic, understanding that we have others we can learn from.

Paula: Red, just one more question-why was I mostly pain free from the ATN for the first week after my MVD surgery?

John Quill: It’s a difficult diagnosis to live with, and many of us (me included) spent over 20 years without any diagnosis at all. Okay, I will leave info again, Red.

Gloria E: 28 minutes left… any other r emergency issues anyone wants to discuss?

John Quill: If anyone is ever in crisis because of this illness and the pain it causes, especially children, I am available to listen. I am an ATN patient with 39 years of history, and I’ve lived through a lot. (jqt333@gmail.com)

SF Bill: This chat reminds me of my youth hanging around the street corners, several conversations going on all at once and everyone understanding each person talking.

Judith: My Dr.says this condition not uncommon but I find that so many people could be suffering the way I do and no cure.

Elaine48: is there anyone that has heat help more than cold? How do you get a diagnosis, it’s awfully hard?

Paula: Judith, I was told it strikes 1 in 25,000! With those odds, we could win the lottery?

Red: Paula, it is common for the nerve to be briefly deadened simply from being held by forceps.

Red: Anyone who needs a paper on incidence can contact me.

Stef: Heat helps, but Roxicodone or Methadone, excludes pain, at least for me.

Amy Culpepper Elliott: Yes, I use heating pad sometimes and it helps.

Paula: Red, the Dr told me he cauterized the vein near the trigeminal nerve.

Red: The numbers estimated in UK and Holland are 12-20 new cases per year per hundred thousand.

 Red: Paula: cauterizing the vein is common. It helps avoid recurrence.

Red: Can’t do it with arteries.

Paula: Red, he padded (3 pads) the 2 arteries.

Min C: Yes, I want to say…Never give up, and never give in. As quoted by the infamous Dwayne Johnson. THE Rock.

Elaine48: Is there a good Dr in the South or New York? I have had some names have been mentioned-Paul Greene- Mausiak.

Gloria E: RED-questions to ask your doctor? Summarized from the Facial Pain Tab.

Red: Try Columbia for a good Doctor in New York.

Amy Culpepper Elliott: Elaine, I amusing Dr Babu at NYU and like him.

Red: Gloria—sorry? You intended what?

Macmama: I love life. I was in crisis when I joined this group a few weeks ago. Found myself at railway tracks after having a complex partial seizure. Just wanted the ATN pain to stop. Went to the Dr the next day and added Lyrica to my regime and it has been 3 weeks.

Red: Mac, have you had any relief?

Elaine48: I just made appt at the orofacial clinic, do you know anyone else? My ENT sent me there.

Macmama: Thankfully, some.

Paula: Red, with having you as a resource and adviser, what does your wife take?

Red: Neurontin.

Elaine48: has anyone heard of headache clinics? They are in NY.

Red: And lots of patience. We’ve been married for 32 years.

Paula: Red, just Neurontin-did you say 2700mg?

Red: Paula, yes.

Red: But dose is individual to patients.

Elaine48: Only 32 years, we are 41.

Red: Based on tolerance to side effects and effectiveness against pain.

Paula: Red’ should I try increasing my Neurontin myself or ask the Dr- would you believe I’m having an episode right now?

Red: ASK YOUR DOCTOR! Not smart to self-dose.

Carole: is there a certain medication that is taken with Lyrica that works the best. Or is this trial and error?

Amy Culpepper Elliott: Agree with Red!

Macmama: Agree with Red

Andy Anthony: That’s hard to do, having to wait for an appointment.

Red: Call doctor or triage nurse.

Elaine48: Does your wife have attacks Red?

Andy Anthony: Having to wait anymore time as you believe that the more dosage would at least slow down a flare up.

Elaine48: I agree

Gloria E: ALSO not smart to take yourself off meds without consulting your doctor.

Stef: Neurontin can also be used in conjunction with other medications to work systematically, if Neurontin itself does not alleviate your symptoms.

Amy Culpepper Elliott: Agreed, Gloria.

Red: Elaine-- my wife has “some” TN pain every day. But Neurontin takes the top off the iceberg and she tolerates the rest.

 Andy Anthony: Aaaah that’s a good question… How many of you have “flare-ups” where the pain seems to intensify and occur more often in a given period of time?

Paula: Does she have TN or ATN?

Red: Note for Stef: there’s a paper on cross-action between Neurontin and Opoid therapies. Results better with combo than one alone.

Red: Paula:  my wife has a mix of TN and ATN.

Amy Culpepper Elliott: Probably most of us, Andy. I love the times where it is slow.

Red: Both sides.

Min C: Call your Doctor; agree with RED, Very important!!!

Gloria E: Andy… I think most of us have bad flares that should be treated at an emergency room to break the pain cycle for time to time.

Stef: I have read such, Red, and was also advised the same by my Pain Management Doc. Neurontin works better with Opiates. Than other drugs used for ATN, I quote.

Macmama: Wow Red. Both sides? Love to her.

Red: Agree with Gloria. Controlling breakthrough pain is important.

Paula: That is disappointing – I was hoping to wean off neurontin - -I don’t like the side effects - -makes me dizzy and I lose my words and have a difficult time typing etc.

Judith: I was taking 3000mg of Neurontin daily and was still in pain, my Dr changed me to Lyrica last month and the pain has doubled. I guess the neurontin was working better than I thought. I should have just gone up on Oxycodone, Trial and error.

Red: Mac, my spouse is one of the bravest ladies I know.

SF Bill: My experience with neurontin is if you missed several dosage times, pain quickly re-emerges. Neurontin passes through he system quickly, anyone else experience this?

Stef: Yes, Gloria. Breaking the cycle may be crucial

Andy Antfony: For sure.

Red: Judith, you may need to be tried on a combination of two drugs in different classes, such as Neurontin and Amitriptyline.

Stef: Bill: Yes.

Amy Culpepper Elliott: I never go to the ER but probably should sometimes. I’ve been once in 4 years. It is so hard to wait. Guess I figure they are just going to knock me out. Maybe that’s the point!

Unknown: My combo is Lyrica and Lamictal.

Gloria E: 15 minutes left… any other issues to be addressed?

Andy Anthony: Best combo I have used to date.

Red: Thanks Gloria…

Red: Anybody else?

Red: Any emergency requests?
Paula: Thanks to all- my prayers go out for this group (including me!).

Andy Anthony: sure, can you give me a miracle cure?

Andy Anthony:J

Andy Anthony: red, you asked!

Judith: thanks, Red I’ll ask my Dr about amitriptyline.

Red: All must leave at 1600, but there’s no reason you can’t continue the session together if it seems productive.

Amy Culpepper Elliott: No emergency requests. I had asked why the increase in heat like the heat wave we are having right now makes the pain so much worse. Having much more pain right now.

Andy Anthony: Do you have a count of how many participated today?

Macmama: Strength and courage to all. Thank you.

Judith: Thanks to all for support.

Paula: I counted 22.

Red: Amy—heat doesn’t affect all patients the same way. But generally CHANGE in temp tends to be a trigger.

John Quill: I saw about 28 people at maximum.

Andy Anthony: Oh mine is the opposite Amy, winter time is amazingly depressing with the cold on my face. I pray for the summer to get here.

Red: Paula: our peak was about 32 I think.

John Quill: We always lose a few patients J

Paula: That’s an impressive number – shows how desperate we are!

Red: Many folks have pain in the winter months.

Stef: Amy: No. the point is to break the cycle. When I went to the ER as little as 2mg. of Dilaudid and a fentanyl patch broke the cycle for a while.

Andy Anthony: No doubt.

Amy Culpepper Elliott: It’s awful right now. I can hardly go outside and even if I stay in, my pain is worse. Dr has increased Lyrica but even that’s not helping.

Red: Paula: also shows how SMART we are, and there are numbers of us. United we can accomplish more than separately.

Paula: Good point Red, is there any actual research going on out there even though we are small in numbers?

Red: Amy, follow up to my email address here, with your present drug regimen. I’ll take a look.

Elaine48: Amy- how often do you get out? My greatest fear, isolation.

Red: Paula, yes there is research. But it’s a beastly complex set of neuro chemistry.

Stef: There is no cure. So, perhaps, some must be realistic that this must be managed. It’s a life changing illness. At this point in time, research provides no cure.

Elaine48: Stef-some of us have multi issues.

Andy Anthony: Perhaps on another session, we can discuss how to cope with Depression, isolation, helplessness.

John Quill: I also have Migraines, and Maxalt (Rizatriptan) helps quite a bit, but they are about $20 a pop ($* with my lousy co-pay) and I look forward to when it goes Off Patent, probably in 2012 (anyone know??).

Amy Culpepper Elliott: Elaine, I’m 48 and hardly get out. Sunday church, which I love, the grocery store and that’s about it unless it’s a special occasion.

Paula: Great topics Andy-

Red: Andy—yes that’s on the list.

SF Bill: Now, whenever someone tells me they have toothache, I say are you sure it’s your tooth, ask your dentist about TN.

Stef: I have multiple issues Elaine, but this chat focuses on ATN. Thanks.

Paula: SF Bill, I was misdiagnosed by 3 dental specialists and one said I had a cracked tooth. Had the tooth pulled?

Gloria E: There are a lot that have multiple conditions. I have three. It makes dealing with the Atypical even more challenging.

Stef: Thank you, Gloria!

Min C: I think that bending over can put extra pressure on the nerves in the head and I just don’t do it any more.

Stef: Gloria has the same complaint, Min.

Amy Culpepper Elliott: Thanks, Elaine. I wish you could too. I’ve gone from being a total chatterbox to dreading talking, even on the phone. I Facebook and that’s about it.

Gloria E: Min… me too. Bending over is a trigger.

Elaine48: Would an ATN chat include other cranial nerves?

Andy Anthony: Oh, another one, how much is MS and TN tied to each other?
Stef: TN and ATN both involve the 5^th cranial nerve only.

John Quill: I believe my ATN and Migraines are related, at least maybe from the same origin or cause, but it’s a wicked thing to have two conditions which some meds are contra-indicative for the other condition! Luckily, I seldom have to deal with BOTH!

Stef: The Trigeminal nerve.

Elaine48: What about medication, simple neck movements, does anyone have helpful movements during attacks?

Gloria E: Andy… from my research many MS patients have TN/ATN. It has many similarities.

Stef: Judith: Good question! Red, are you still there?

Red: Judith: I believe laser treatment has no basis in human trials. We’ve heard some testimonials.

Min C: John I take Tegretol and at 8 level I started getting Migraine type pain daily. I am now on Topomax too and doing better but still am thinking about increasing the Tegretol, it’s been a month so not sure yet but the Migraine pain is much better.

Andy Anthony: Yes but if you are young, you wouldn’t want to think you have MS.

Red: I distrust testimonials without data.

Gloria E: Andy—many young people can have MS and TN/ATN for, that matter.

Jackie: 5 minutes left guys.

Red: Andy, I agree with Gloria. I first got into patient advocacy with a 26 year old MS patient.

Judith: My Dr has bought up laser but said it might cause numbness on some days I think it would be a good thing.

Red: Before I go, a word of thanks: Stef as leader of the ATN group, and Gloria as a co-moderator helped me build the Face Pain Info tab. Jackie is attempting to generate our session minutes. All these ladies keep me honest and humble.

Judith: Appreciate it.

Elaine48: Thank you for keeping me hopeful and balanced.

 Carolina Thatcher: I have TN. But my MRI’s show lesions consistent with MS. But until now there is no MS diagnosis because in 7 years there is no other neurological symptom. The lesions have not changed. I have failed the MVD.

Stef: Thanks to Red and Gloria, yes. Thank you to all the members who participated, as we all learn together.

Red: We’ll do this again, with a site announcement and requests for topics.

John Quill: I play cribbage with an MS patient, in fact I missed playing today due to this Chat! I can see how the Medical Profession would classify TN/ATN as being similar to MS, but from the patient perspective, it’s really quite different.

Stef: Jackie, you too.

Jackie: I have to give silent applause to you guys for keeping it real and clean!

Elaine48: this has been great, more please.

Jackie: TY

Gloria E: Thank you Jackie!

Carolina Thatcher: Thank you!!!

Jackie: Ur welcome

Carolina Thatcher: See my spelling? Ha!

Gloria E: THANK YOU RED!!!!

Elaine48: This has been great, more please.

Red: Jackie you can blush now. You’re one of the most gracious ladies I know. Certainly in the league of Gloria and Stef.

Stef: Yes, Red. We appreciate your help very much!

Jackie: I’m blushing!

End of Session