Facial Pain Information

Comment

Comment by Richard A. "Red" Lawhern on November 23, 2011 at 1:07pm

Note for people who follow the Facial Pain Informati0n page:  I've just put the page through a major reorganization and expansion to make it a bit more digestible.  There is a new "Print Version" file with all of the materials of the page combined as they were originally, to facilitate an end to end printout.  Likewise, the master index (above) now links to a series of 22 "Parts", each of which corresponds to a major section in the print version.  Hopefully this will make the material less intimidating and more useful to all.

As a footnote:  I've deleted postings to this main page earlier than August 2011.  In most cases, materials offered by some of the posters have been incorporated into the information pages.

Thank you one and all for your input and commentary.  And please feel free to comment again.

Sincerely,

R.A. 'Red" Lawhern, Ph.D.

Resident Research Analyst, LwTN

Comment by Richard A. "Red" Lawhern on November 11, 2011 at 6:34pm

An Announcement for all who follow this page:

 

TN Association Re-Classifies Atypical Facial Pain

The Medical Advisory Board of the Trigeminal Neuralgia Association has recently announced a new definition for so-called "Atypical Facial Pain".  They now define the syndrome as " facial pain of obscure etiology."  This change challenges the rest of the medical community to recognize that this diagnostic label is not a psychosomatic disorder, but rather an admission of ignorance.  This is a profoundly positive step toward helping medical practitioners to release their hidebound insistence on the foolishness that depression causes face pain or can be "converted into" pain symptoms.  It is also a step that I have personally been lobbying for over a year to bring about.

For details visit http://www.fpa-support.org/2011/10/facial-pain-experts-establish-a-...

Discovery credit for this link goes to Gloria Ericson, who first pointed it out to me. TNA didn't have even the minimal courtesy to tell me that they'd decided to agree with a position that I've been urging on their management and Medical Advisory Board for months.

Regards and best to all,

R.A. "Red" Lawhern, Ph.D.

Resident Research Analyst, LwTN

Comment by elaine48 on October 19, 2011 at 2:09am

Perhaps we could also list cds for positive thinking and meditation. When you cant sleep, it would be helpful to listen to something soothing to help one relax. anything that can remove you from dark moments. Thoughts of a kinder world and perhaps substitute for a pain pill.

Going to buy a book!'

Keep the ideas rolling. They do help!

Comment by Richard A. "Red" Lawhern on September 25, 2011 at 9:27am

To answer your other question concerning metal sensitivity, Tink, I just don't see the mechanism.  For white cells to attack anything, there has to be something they can chemically "sense" and react to.  Neither titanium or stainless steel  displays such chemical interactions, as both are practically immune from corrosion.  And as far as removing the prosthesis is concerned, a mechanism of potential damage would be the physical handling of nerve endings, and/or snips or crushing in the fine structure of the nerves incidental to the incisions needed to free the prosthesis from surrounding tissue and bone. 

Regards, Red

Comment by Richard A. "Red" Lawhern on September 25, 2011 at 9:12am

Tink, Radio Frequency Rhizotomy is often referred to synonymously with Radio Frequency Ablation.  Both are intended to cause long lasting lesions (scars) on the surface of the nerve, which may have the effect of rendering the nerve less efficient in transmitting pain impulses. 

I'm going to have to do some research on the procedure you have described, because it appears to differ significantly from the RF Rhizotomy procedures with which I am familiar.  RF Rhizotomy is performed with a hollow probe inserted through the base of the cheekbone and threaded through internal cavities in the skull to reach a cavernous area in which the trigeminal nerve is accessible.  A wire type probe is inserted through the hollow probe and emerges from the end placed near the trigeminal nerve.  When a fluoroscope image indicates the probe is positioned correctly, electric current is applied to this wire, causing the end of it to heat up while in contact with the nerve.  There is no laser involved in RF Rhizotomy.  The lesioning or ablation mechanism is heat generated by a radio frequency electrical current.

Please ask your doctor whether a laser is actually involved, or whether instead he is doing a variant on RF Ablation or Rhizotomy, with a different point of entry in the face.  In either case, however, my observation would still be the same:  with the amount of iatrogenic damage you have from the TMJ procedures, it is unlikely that Rhizotomy will help you significantly, and it might cause even more pain in the future.  

Regards and best,

 Red

Comment by Tinkerbell on September 24, 2011 at 11:59pm

Hi Dr. Lawhern, it's Tink.  So, I take it that you'd avoid GK and Radio Frequency Ablation (is that the same as Rhizotomy? They numb up the area in front of my ear where the trigeminal nerve branches from V2 and V3 and insert a laser like device that they watch while it's xray guided and they will shoot "electricity-like" feelings into the areas of my gums and teeth where it has that cold burning sensation and the bigger teeth that have an indented center, like a molar, feel like they already have a raw nerve hanging out the center anyway, and this laser like device continues to shoot electrical like feelings from my molars to my front teeth on the right side of my face for a minute or so.  Then, they pull the laser device out of my upper cheek area in front of my ear.  And we are finished.  They have me wait a couple of weeks and then we do it again to see if we can get better results.  Like I mentioned, even though the laser device shoots the electricity-like feelings from my molars to my front teeth on the right side, it has only been successful at making my molar pain free.  I still continue to be in pain 24/7 every where else.  So, I'm not really getting any benefit from the Radio Frequency Ablation.  The doctor that I receive it from is consistently listed in America's Top Doctors from Castle-Connolly but she says she's not skilled enough at RFA to reach the distal branches of the trigeminal nerve to help me with the rest of the pain.  However, like you mentioned, I might cause myself more pain if I continue to try to get more pain relief using this method.  So, is Rhizotomy the same as RadioFrequency Ablation?

 

I'm sorry that I confused you if I said that I was on Elavil, Pamelor and Zoloft at the same time.  I have tried them individually but not at the same time.  I'm a petite 5'2' and l08 lbs and would be a definite zombie on Elavil and Pamelor.  Individually they mae me extremely drowsy so together they'd probably do me in!  Effexor is a SNRI (Seratonin Norepinepherine Reuptake Inhibitor). 

 

It's interesting what you said about the metals.  There is more and more data out there showing that titanium is not as "inert" as once thought.  So far, there is a 2-5% hypersensitivity reaction to it in the literature depending on what study you're looking in.  There seems to be an "implant" syndrome similar to the silicone breast implant problems.  I realize that a version of the old silicone implant is back on the market in the form of silicone gel but patients are being monitored by the manufacturers, i.e. Mentor, annually with a lengthy questionnaire about rheumatoid problems, lupus, chronic fatigue, fibromyalgia symptoms, etc.  But the metal implant hypersensitivity seems to be that of a "foreign body reaction" and the white blood cells attacking it.  Also, patients develop alot of pain where the implants are or in the region sort of like Complex Regional Pain Syndrome.  On a CT I had, the metal was hitting along the inferior alveolar canal in one area.  I had that piece of bone plate removed.  The pain stopped in that area.  It's difficult to read any MRI or CT due to the metal causes ghosting or "artifact" on the pictures and makes it difficult to see if any metal is hitting along a nerve.  The doctor says the stretching of the nerves for 12.5 hours may have been a factor in  my case...duh. 

 

I find it interesting that you stated if the prosthesis were removed, it might lead to more neuropathic pain.  The TMJ surgeon removed the prosthesis in two patients 8 weeks ago and they are in more pain now than they were before the surgery.  They thought they were at a level 10 pre surgery but not so.  I feel so bad for them.  I was asked if I wanted my prosthesis removed and I told them that I did not want to be a guinea pig.  I'm glad I didn't do it.  Sorry for asking you this but can you explain why you think we could not be hypersensitive to metal?  Why would removing metal po

Comment by Richard A. "Red" Lawhern on September 24, 2011 at 9:03am

My personal advice to ANY patient with your record of iatrogenic injury would be to avoid Gamma Knife and the Rhizotomy like the plague.  As far as having your prosthesis removed... on that one I'm just not qualified by either experience or reading to advise you, Tink.  My instincts would be "no", but that's just what they are -- instincts. 

Concerning hypersensitivity to metals:  this one strikes me as rather odd.  The metals installed in your face cannot possibly be water soluble, so it's really hard for me to see how you could be "sensitive" to the metal at all.  I think your risk of further nerve damage (leading to more neuropathic pain) is a more realistic risk if you have the metal removed. 

Of the meds you name, I believe only Elavil (Amitriptyline) is a tri-cyclic antidepressant, while Zoloft and Pamelor are both SSRIs.  I'm surprised that you would be placed on all three at the same time, as only Elavil has a documented record of effectiveness against neuropathic pain.  Effexor (venlafaxine hydrochloride) is listed as an anti-depressant of "novel" physical chemistry.  I'm not sure which category it is.  My instinctual impression is that it may be wise for you to talk with your neurologist about reducing the number of meds you are on, in favor of concentrating on one of the tricyclic antidepressant meds, and trying to find a med delivery mechanism that you can tolerate.  That could be either more divided doses, compounding of the med for topical application or a low-dose med pump.

One other thing I think a pain management specialist would tell you is that treating for breakthrough pain is a  bit like closing the barn door after the fire starts.  You need to be sufficiently medicated to STOP the pain before it starts, or keep it to manageable levels.  The more pain you have, the more toxic biproducts are generated in the blood stream and nervous system.  After a long enough time, the neural genetic chemistry itself can be affected in permanent ways.  That's a large part of how "chronic" pain becomes "chronic."

Based on what I've heard from patients, ATN and other closely related forms of facial neuropathic pain can indeed produce sensations similar to those you describe, and indeed similar to Anesthesia Dolorousa.  I'd say that you may be at substantial risk of MORE AD, if you go through a fourth ablation procedure.  I'd also say that there is substantial reason to believe that Gamma Knife will eventually be barred from practice in the treatment of trigeminal pain.  GK has a role to play in suppressing otherwise inoperable brain tumors, but the procedure makes a bloody mess of the area around the target zone along the trigeminal distribution, and thus renders follow-on surgery by MVD  much less successful.  This last observation is founded on the inputs of three different neurosurgeons, one of whom stopped doing Gamma Knife when he came to this conclusion.  

If you've only been here for a couple of days, then I suggest you join Stef's ATN group and talk with other patients who have that variety of TN.  Feel free to post other questions.

Regards and Best,

Red

Comment by Tinkerbell on September 23, 2011 at 9:58pm

Hi Dr. Lawhern,

Thank you for your comments.  I've had one other doctor tell me not to have any more surgery because they felt that now I've had this iatrogenic injury, where even my dentist who is one of the 3 people that referred me to the TMJ surgeon who basically splayed my face out on the OR table, that has caused a snowball effect of problems or should I saw avalanche, I could be susceptible to pain problems elsewhere in my body.  Other doctors including neurosurgeons, neurologists, oral maxillofacial surgeons, and pain management specialists have suggested that I keep trying a variety of meds and/or procedures from more Radio Frequency Ablations to possibly Gamma Knife.  A couple of oral maxillofacial surgeons have suggested that I have the prosthesis removed because I'm hypersensitive to the metals so I should have it removed.  If I have it removed, I will have no way to open and close my mouth very well.  My OMFS removed the prosthesis from 2 female patients recently because they were in horrible post-operative pain and they were begging for the prosthesis to be removed.  The OMFS finally removed the prosthesis in these two patients and their pain got worse!  They didn't think that was possible and their teeth began to shift.  Naturally, now he doesn't want to remove any more jaw prostheses until he figures out what went wrong.  Everyone figured once the device that started the pain was removed, the pain would go away.  That wasn't the case, it got worse.  Something he's doing is damaging V2 and V3.  At any rate, I have a question regarding Elavil and Pamelor.  I'm sensitive to meds.  I'm a zombie from the moment I wake up until around 3 p.m. when I come out of the fog.  I've been on Elavil and Pamelor.  I cannot get up to a dose that helps with pain due to the zombie-like side effects.  The only antidepressant drugs that I've been able to tolerate are Prozac, Effexor and Zoloft.  I'm on Effexor now but I cannot say it's doing much.  I stopped it at one point to see if my pain levels got worse, but they were the same whether I was on it or not.  But my doctor wants me on it and I'm on 75 mg of Effexor.  I take 10 mg of Methadone BID and 75 mg of Nucynta BID for breakthrough pain.  That term is a joke to me because the pain that I have is 24/7 so I guess I have continual breakthrough pain?  I'm also on 50 mg of Lyrica TID.  I was on 100 mg of Lyrica TID but I'd fall asleep at the dinner table in midsentence while eating my pureed meal.  I've been on Oxycontin, Percocet, Norco, Tramadol, Toradol, Dilaudid, Cymbalta, Trileptal and such with no improvement of pain.  The only thing that has helped is a nerve block of the Trigeminal nerve which only lasted a few hours or if I was in the ER for dehydration from throwing up due to Level 10 pain and was given IV pain meds, fluids and Zofran.  I am scheduled for a 4th RadioFrequency Ablation in 2 weeks.  The only result I got from the other 3 I've had is a numbness of my right molars. Do you know of anyone who has had RFA and the doctor was able to alleviate the pain from all of their teeth?  I'm the one that has Atypical Trigeminal Neuropathic Pain Type 2 in every tooth (feels like a raw nerve hanging out of each tooth with an electrical feel), and a cold burning sensation like dry ice stuck to my gums, lips but my chin can get that burning cold sensation but most of the time it feels like what anesthesia dolorosa is described as feeling (numbness with pain).  Is this weird or sort of normal based on what all you've heard from various patients?  I've just found this website a couple of days ago.  I've basically been conversing with TMJ patients who usually have a combination of nerve pain but mainly muscular pain as a post-op complication.  I felt like an odd man out until I found this site.  So you feel that things could get worse if I have that 4th RFA?  I worry about making things worse because a couple of neurosurgeons who do Gamma Knife have told me this but the

Comment by Richard A. "Red" Lawhern on September 23, 2011 at 7:39am

Tinkerbell,

First a minor correction:  remember that my doctorate is engineering, not medicine. 

Second.... good grief, where to start!  For one thing, the CuraeLase procedure is only certified "safe" -- NOT effective -- by the FDA.  It "hasn't been used in academia" because there are no published randomized double blind trials.  Though other laser illumination experiments have been done in promoting deep muscle and bone healing, the overall results even for those disorders have been very spotty.  There are no standardized protocols anywhere in that field.  And I've seen no evidence at all that the technique has any effect on nerve tissue.

Re your TMJ surgery:  you are sadly experiencing the consequences of a truly abysmal state of art in this variety of oro-facial practice. Fifteen years ago, a consensus board reviewed the state of practice in TMJ assessment and correction.  The following was among their reported results, summarized in a recent paper on Policy Recommendations for Treatment of Chronic Pain in Women:

"A 1996 NIH-sponsored Technology Assessment Conference on the Management of TMJ Disorders
concluded that there was no consensus on what pain in the jaw signifies; what the condition should
be called; and who should treat it. Conference members determined that it was impossible to
know what treatments are effective due to the lack of clinical trials and that many people were
being harmed by treatments... Today, we understand that this is a highly complex disease
involving genetic and hormonal influences as well as a myriad of complex biologic factors."

I don't personally see that as a lot of progress for 15 years in which many thousands of patients have been harmed by inappropriate and often unneeded surgeries. 

With the variety and causes of pain that you deal with, my instinct is that you shouldn't have any more surgery -- of ANY kind.  I believe many neurosurgeons would agree.  When neuropathic pain has a discrete source in iatrogenic injury, the destructive procedures such as RF Rhizotomy very often cause more downstream harm than they do good. 

My suggestion would be to concentrate on medication and med-delivery solutions at this stage.  Among the former would be re-trials of meds in the tricyclic antidepressant class (Amitriptyline, Nortriptyline, others).  These meds are known to have a cross-action against neuropathic pain, and are widely accepted in practice for pain treatment.   Among the latter steps may be the services of a compounding pharmacist to prepare topical versions of some of the meds you haven't had success with in the past, or possibly the installation of a morphine pump.

I wish you well, Tinkerbell.  I wish there was more that I could do to help.

Go in Peace and Power

R.A."Red" Lawhern, Ph.D

Resident Research Analyst, LwTN

Comment by Tinkerbell on September 22, 2011 at 10:39pm

Hi, thanks for such a comprehensive overview of all of the above and the attached articles.  A friend of mine lives in Myrtle Beach and has Complex Regional Pain Syndrome.  She's heard of the Laser Medical Center where they use the CuraeLase laser that is FDA approved but has not been used in academia. I have Atypical Trigeminal Neuropathic pain that is in every tooth (feels like a raw nerve hanging out), my gums (that feels like dry ice is stuck to them) as well as my palate, half of my tongue, bottom lip and chin. The bottom lip feels like pins and needles with a sting, my chin feels like part numbness with underlying horrible pain all of the time and all of the abovementioned pain escalates when touched.  I cannot "chew" due to pain in each individual tooth so my food is soup, pureed or very soft like oat meal or mashed potato-like. I've tried opioids, Lyrica, Neurontin, Cymbalta, Elavil, Effexor, etc.  The best relief was a diagnostic trigeminal nerve block which only lasted several hours.  I got some relief from a diagnostic inferior alveolar nerve block.  I've had 3 RFAs : 2 on V2 and 1 on V3.  The only relief that I got was my back molars have no pain but the "electricity" did not reach the other teeth. My Emory doc cannot seem to reach the other branches or ganglions of these nerves.  Oh, I had a sphenopalatine ganglion nerve block (6 of them) with no luck and one stellate ganglion nerve block with no luck.  What brought all of this on was a 12.5 hour TMJ prosthesis surgery and orthonathic surgery where a left prosthesis was implanted, a right Mitek Anchor to secure my own condyle/disk, my upper and lower jaws were advanced forward and every bone in my face except for my forehead was broken and put back together with bone grafts, bone screws and bone plates.  I found out that I'm also hypersensitive to all of this titanium alloy metals and plastics implanted in my face that may be contributing to the pain.  On MRI/MRA, on the right side I have a large flow void and prominent vascular loops that could be causing the flow void of contributing to the atypical trigeminal neuropathic pain.  I'm about to pull my hair out.  Due to the amount of metal in my face, there is artifact or shadows in all of the CT and MRI scan pictures so we cannot see the left side or anything else extremely clear.  I'm usually working full time as a pharm rep for the past 19 years driving all over half of the state and very active with work, my daughter, socially, at church and at exercise class.  For the past 2+ years since April 2009, I've been curled up in a fetal position in pain half of the time.  The "story" is much more involved than this but this is the gist of things.  Any suggestions????  Thanks, Doc!