TMJD and newly "probably" diagnosed TN

General General TN & GPN (Old Site)
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Hello everyone,

I was honestly hoping to never make it over to a board such as this. I am an almost 31 year old hospital chaplain resident who has been in pain most of my life. At the age of 7, I fell 2.5 stories off a gym rope, landed on my chin, and fractured my jaw. There began my life with TMJ problems.

Last year the pain became too great. I not only had structural problems and muscle tension, the nerve pain was overwhelming. The nerve pain had been building for many years and was mainly across my jaw line and while constant, would have significant bouts of stabbing, electrical type pain. I went from diagnosis to diagnosis depending on the doctor. I had a few say that thought it was TN but this was hard to imagine given all my TMJ problems. I finally landed with an oral surgeon at Hopkins who did bilateral TMJ surgery. We decided if I still had the seriously nerve problems I probably had TN as well.

So, my pain got better in terms of the structural and some of the muscular. It even seemed like for a while there the nerve pain wasn't as bad. Then a few months ago the nerve pain shot back stronger than ever.

I've started with a new neurologist this month who is treating me on meds for TN. I'm now on "stating doses" of tegretol, baclofen, then a whole bunch of other meds i've either been on or are believed to possibly eliminate some of my jaw problems. One of these is Ambien which was given in the hope it will eliminate some of my jaw clenching.

I am really struggling as I am not the typical TN type person. My pain is on both sides, it is constant with shocking/stabbing pains probably every 10-30 minutes or so. I know some of my triggers come from jaw clenching, though others are as simple as laying my cheek on a pillow or having the wind blow across my face.

Sometimes I feel like I am simply crazy. Othertimes I wish to God I could stop some of these meds as I struggle to function on them, though I can't funtion without them. I'm having to take narcotics often just because the pain is too much to bear, though they really aren't that effective anymore.

I wish I could simply fit into one group. I wish I could find some sort of clear cut answer for my pain. There is nothing worse it seems than not having an official diagnosis. Yes, I was officially diagnosed with severe TMJD, but we know for certain there is something else going on. We are in the "we're pretty sure it is TN" stage but not at the point of calling it that 100%. We're waiting to see how I respond to meds.

So, because of that I am not even sure I should be in this group. That makes me even more frustrated and alone. I know it sounds a bit cliche but I really just want an answer and a treatment. I know i'll never be free from pain, i've been told that over and over again by doctors. All I desire something that is functional; to be at a place where i'm not at an 8-10 everyday. It would be great to be able to work without feeling like your just getting through minute to minute.

Thank you for taking the time to read this. I know i'm wordy but I guess that comes with both being in a place that feels so isolating and being a pastor. We pastors can't shut up!

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A few thoughts, Laura.

First and perhaps most important, TMJ Disorder and TN are not mutually exclusive, particularly in patients with a history of facial pain trauma. The confirmation that I see most often mentioned in medical literature, that some part of your pain actually is TN, may be a positive response to a short course of an anti-seizure med like Tegretol or Oxcarbazepine (Trileptal).

Second, it seems to me that your physicians might want to consider gradually scaling back most of your meds, while increasing doses of one or two, to test which of these meds is most effective for you. While medication "cocktails" are sometimes used in facial neuropathic pain and can be quite effective, the prevailing medical opinion seems to be that combining a great many drugs at once tends to produce more side effects, not always with evident usefulness against the pain itself.

Third, it also seems to me that if you don't have a comprehensive diagnosis and treatment plan, then there may be benefit from pressing to get seen and worked up by a major regional medical center such as Mayo or Johns Hopkins, to attempt to get better resolution on your way forward.

Fourth, there is often benefit from talking in person with other facial pain patients. If you don't mind posting your geographic location here or sending me an email through my hotmail gateway (lawhern@hotmail.com) if you wish to be more private, I can look up (or you can look up) the nearest Trigeminal Neuralgia Association patient support groups and contacts.

If you're up for a little web browsing, do some reading under our "Help With Research" tab here at Living With TN, and then visit the US National Face Pain Association at http://www.fpa-support.org. They have a rather deep knowledge base open to members who have signed up for a free login. They also support two quite active patient to patient forums similar to this one. By entering the name of your nearest large city in the site search window (ours is at the top right of this page), you might also find postings by people who are geographically close enough to visit with by phone or in person.

I wish you wellness,

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

Resident Research Analyst, LwTN

FYI: my doctorate is in engineering systems, not medicine. You will need to confirm my suggestions with a properly licensed and trained medical practitioner.

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I use this because of nocturnal grinding... NTI-TSS.com - The most effective FDA-approved method of migraine prevention - Home

It has been my one and only lifesaver for about 4 years now.. i can control day time grinding these days, but no drug controls it at night.

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lol… its not as a bad as it looks… mine fits on my top 2 teeth. i paid about 400.00 for it. one time visit fits it, but i did go back like 3 times in the first 3 months for proper adjustments… it prevents me from putting any pressure on my jaw at night and it is a huge relief… constant grinding not only ruins teeth it can cause jaw problems and headaches. i never get headaches anymore and my jaw is way more relaxed in the morning these years.



Donna M said:

WOW..that first device looks lethal for sleeping...LOL My dentist wants the oral splint $300...in front and TMJ specialist wants me to get a $1000 one...he works 2 hours away and need lots of fittigs etc...Yep..I think my clinching due to pain..mkes the ATN and jaw pain worse..I can feel it streak across my cheek, up my nose with that trigger...They could not even get my temporary crown off I had clenched it on...pulling and yanking made the nerve worse and face swell with that TN red streak across the cheek and was hot too.... I need to go to a major place. Have Emory scheduled for Sept and made the appointment in March.. What will happen with universal health care here? I am in the Smokeys in no doc land..well..any specialist. Praying for better connections and diagnosis...Thanx..a splint is a good idea..My TMJ specialist sai dmy stuff was primarily neuro...D
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Wow, thank you for all the wonderful feedback thus far. You seem like a very supportive group!

In regards to in person support, I would love it. I live in the Seattle area and work at Harborview Medical Center. If you know of anything in my area, please let me know!

I have used the NTI in the past and once I saw my oral surgeon at Johns Hopkins, he took me off it immediately. It was actually causing me more problems which he said is very common with the type of TMJ damage I have. He said he would never recommend it for severe TMJ problems so I now wear a fitted oral splint 24/7. It has helped keep my TMJ separated 3mm which prevents damage even when you clench.

I have heard the NTI works for some people, just not for me. Thank you very much for the recommendation though.

I'm so grateful to hear from others with facial nerve pain. It is a very lonely thing and so hard to explain to others.

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I sometimes feel like I clench my teeth at night. I can't sleep on my check/ear for long without pain. My jaw bothers me alot. But I also get severe shocks up my left side of face like TN. The medices have helped but I have built up a tolerence to them. Haven't been eating alot due to pain that it brings me. I can't chew only soft foods, yogurt, puddings and that gets old quick! I can't talk alot, cold to heat bothers me also. Take care and good luck.

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Laura, the Trigeminal Neuralgia Association (Facial Pain Association) lists the following contact points in Seattle and Tacoma:

Telephone Support

Gardiner

Nell Wilson

(360) 797-7575

Seattle

Lynn Bollinger

(253) 852-4492

bollingerlm@comcast.net

Tacoma Area

Byron Dodge

(253) 265-3615

Keyra McLaughlin

KeyraMcLaughlin@fhshealth.org

Regards and best,

Red


pastorlaura said:

Wow, thank you for all the wonderful feedback thus far. You seem like a very supportive group!

In regards to in person support, I would love it. I live in the Seattle area and work at Harborview Medical Center. If you know of anything in my area, please let me know!

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Donna,


The following support group contacts are listed at TNA for North Carolina. You may be able to find someone through these people, who has recently visited a physician within reach of your home and had good outcomes.

Telephone Support

Asheville

Susan Albu

(828) 658-9840



Cary

Marge & Larry Oslund

(919) 467-2942



Coastal Area

Carol Kroslow

(843) 237-0135



Greensboro

Joan Stratton

(336) 855-6199

rstrat1995@aol.com



Hendersonville

Rev. Ronald Greiser

(828) 692-6703



Wilmington Coastal

Anita Davis

(910) 686-6210

IXIIV@bellsouth.net

One other thought occurs to me. Try looking up the name "Todd Troost" at google. He's an MD who used to practice at University of North Carolina (Chapel Hill?) and he's written some landmark publications in the area of facial and head pain. I'm not sure he's still active, as it's been 10 years since we corresponded.

Have you read Dr. Esper's CV? A lot of medical folks have theirs online somewhere. If you see the right subject topics in his publications, that can offer some reassurance that he's a useful person to see.

Regards and best,

Red

Donna M said:

Hey Red,

I went to the site a few times and found nothing for NC...I have an appointment at Emory in Sept with Dr. Esper who has been there 8 years only. I just went through the same there with an inexperienced otolarygologist who offered zip even seeing my face and photos let alone tests and complaints.. I waited since March for it and he is a cranial nerve specialist. I am wondering if I should cover it while the wait with a facial nerve specialist..Most of my problems stem from my neck though...but have the many cranial neuralgias listed here. My problem is unable to drive far like to Raleigh and need to stay within 2 hours for a van pick up.

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Red, thank you so much for the numbers and info. Your support and knowledge is most appreciated. I agree that getting a good work-up and hopefully testing out the meds will alleviate some of my pain and symptoms. The side effects have been ridiculous!

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Sorry for using jargon, Donna. "CV" is the Curriculum Vitae, a sort of combined resume and publications list. Most medical and engineering professionals have one, as they are often used by conference organizers, to establish speaker qualifications on specific subjects. I'll sniff about in the next couple of days and see if I turn up one on Esper.

Go in Peace and Power

Red


Donna M said:

Thank You Red.... Susan Albu may be a worthy research find....I will check Todd Troost. What is Esper's CV? Sorry..not sure what that is..clinical vocation?? I have checked profile info and good school and hospital now. I have been told too many people are experts..not to be...and say...no clue..or misdiagnose...D


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Beaten to the CV answer by Red. :slight_smile:

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Just goes to show you, Emmy -- I'm on-line too much!

(smiles)

Regards, Red

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Donna, from reading your profile, it would appear that you might have several neurological problems at the same time and involving more than one nerve. So I'll offer a few observations that may apply to "pieces" of your overall issue.

1. If you have an active Herpes virus in your blood, it should be detectable. Absent a rash associated with the Herpes Zoster virus, it might not be obvious if you have Post Herpetic Neuralgia. Sometimes the rash is internal. Get the appropriate blood test done if it hasn't already been within the past 30 days.

2. Tumor problems and the pain associated with them generally do demonstrate progression -- but very often the progression isn't rapid. In any event, anyone with your patterns of pain should have been referred for MRI and MRA investigations at the highest resolutions available (about 0.65 mm thin slice, done both with and without contrast agent). It is fairly straight forward to eliminate tumor, AVM, calcium deposits, cysts and the like. MS plaques are harder to detect, particularly on the trigeminal nerve. But in the case of MS, you should be dealing with muscle weakness and/or pain symptoms throughout the body, not just in the face.

If your MRI wasn't done with a trigeminal protocol, you might not have received the best standard of care; a do-over would be justified. And even if compressions aren't seen, that does not mean they aren't there. About 10-20% of MVD surgeries performed without a positive MRI indication of compressions actually find them anyway. Lack of a compression should NEVER be a basis for denying you that surgical alternative, if your health otherwise permits; however the complexity of your pain patterns suggests that MVD may not remedy all of the sources of your pain.

3. Problems with spelling, word finding, vertigo and depth perception are fairly common with the anti-seizure meds. There's nothing in your narrative that positively eliminates drug side effects as a source of such problems, though obviously drugs aren't the only things that can cause them.

4. The drooping face could be a consequence of either Bells Palsy introduced by chiropractic injury, or some naturally occurring compromise of a specific cranial nerves (I forget which one as I write in this moment, though I think it may be the 7th).

5. Some of the pattern you describe would be recognized by people under active treatment for "Complex Regional Pain Syndrome" (CRPS) or "Reflex Sympathetic Dystrophy" (RSD). Has any professional discussed those disorders with you? Has anyone suggested that you might be one of the relatively rare women who have Cluster Headaches? Likewise, have you been evaluated for fibromyalgia, Lupus, and Lyme Disease? All have symptoms which appear to overlap yours.

Please note: while I've read this literature for a long time, I'm not a medical doctor. You need to be advised by somebody who is.

Go in Peace and Power

Red


Donna M said:

LOL...OMG..figured it was their professional profile of sorts...Thank You. Hey RED..I have all these areas of pain (minus the TN which is occasionally) but every day ..all day. I am reading here most people have bouts and the longest is weeks to months..Mine just seems to expands to more areas...more defined ..and now the other side has starter flares...same areas..less intense. It seems categories are dental, jaw, neck, MS, lesions or herpatic. Although most have similar within those categories with variants the progression in each seem to present, peak and either stabilize or get significantly worse requiring surgery. I think I am seeing that anatomical or tumor problems just keep getting worse until a drastic move is done...Where I have drooping and my mouth was numb with the initial chiro plunk...I am concerned. I thought my case was mild before coming here...now ..I think it is a fairly serious one..I also went through many years of vertigo on only seizure meds..not Klonipin etc..I fell twic elast month and not from meds..It was like depth perception. Sometimes when I write...I am noticing connecting words are missing sometimes...only noticing it since Jackie's post on spelling. Maybe becuase it is painful on my neck and face I just hurry it along...I proof read a few times...My MRI's of the brain taking twice..were fine..I hate to admit it..I feel envious when people say just my teeth/tongue or eye/forehead or nose or ear or cheek/ temple or throat/chest hurt...I am sick of them all..all at once..all the time..Can there be something else wrong with me...??You have seen a lot through the years....I know you mentioned a possible compression but just had a face, neck and chest CT in Nov. Not much has changed since then...Just wondering...Very tough solo while the US celebrates with family...The ON headaches are not as severe with vomiting....so Thank God! Don't have to reply soon...Just while I had your ear..(or eye I guess). Happy 4th..Have some fun...eat something typically American.Thank You..D

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you are being treated at a wonderful institution and i hope hopkins can help. many of us have several conditions and i hope new meds, new doctors can help.

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Donna and Elaine: You are both dealing with what may be multiple highly complex conditions. As we interact, please be aware that there is much in your experience that I have not studied and for which i am not qualified even to comment casually. As Donna doubtless knows from the medical exposure she's had as a nurse, polyneuropathies are an absolute cast iron b*tch to treat, and both of you seem to be dealing with something in that class. There are times when I feel highly inadequate to render help except at the most marginal level, when I interact with patients. And your cases represent one of those times. Unlike some doctors, I will not project my inability to help onto YOU as patients. But that is small comfort.

For Donna, I would offer a bit of advice. This is a judgment call, but one based on 16 years of talking to patients and family members. In my -- hopefully informed even if imperfect -- opinion, your chances of getting financial compensation for Chiropractor error are about zero to none. You now present with too many different symptoms, most of them not clearly attributable to the original event or events in treatment. Even if there WAS a clear trace for part of the pain pattern, you would still have to prove that the Chiro was negligent of established practice in his own field and do it over the opposition of a battery of highly paid medical piranha fish hired by the Chiro's insurance company. I very much doubt that any lawyer who is experienced in malpractice suits would take on your case except under an advance retainer fee in the thousands of dollars. And that's an invitation to being stolen from.

Sometimes I have to call 'em as I see 'em, Donna. I'm sorry to have to rain on your parade, and I certainly respect and honor your desire to help others, even out of the depths of pain you frequently experience. And for Elane: I really don't know what to tell you to try next. I just don't. I'm sorry.

Go in Peace and Power, both,

Red

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Donna M said:

Thank you for your insight. You are probably correct about the chiro incident and my 2 MVA's have been mishandled by professionals. Time is running out for sure..Too ill to fight for a long time watching as things declined. Unfortunately, I am the one who is left with a chronic painful condition with deformity possibly for life from either the trauma or negligence of four people over four years. Now pros and mentors are speechless...

saying you are too bad..too poly everything...too complicated to help you. They caused the damage..but not having one neauralgia but many I am penalized..I don't think so...not on every front. Well...I say ..when there is complete silence...when all hands are up in the air surrendering...then that is when God steps in...when we are done..and surrender to Him then: My God is able to do exceedingly, abundantly above and beyond all I think or ask. He will see that justice is done. There will be a warrior to fight along with me..perhaps not to win all...but I will not shoulder this entire physical, emotional and finacial burden alone...I will fight to find some law to protect..to defend...and along the journey people who will cheer that victory along. We will see....time will tell. When completed, I will certainly get back to you on my solo battle. It is sad when someone has too many conditions to comprehend how they are abandoned on so many fronts..Where are the politicians for the disabled??? They and seniors have nil support. Social Security is even bias and give the same benefits while people supplement and work..BUT..those who are housebound..severely disabled live below the poverty line..Even pros who made an above average salary and saved the lives of children once upon a time. Rather say nothing than to drop an eaglet from a comfy support system...too soon...to fly hard and fly solo...Crushed..and sad...but flying as an EAGLE for 20 years..I am used to it.. I know how to handle nay sayers...and will never be defeated !! Please keep encouraging people to seek legal and medical advice...Newbies here would be crushed and defeated by this comment..They will find one who is a complete advocate..it just takes time. Any reading this, I encourage you to pursue justice for due bodily harm and altered lifestyle for perhaps life. D

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Donna M said:

Thanx Pastor Laura..This is a great place to be while in the diagnosing stage. I am there as well with many cranial neuralgias, TMJ and Earnest Syndrome too. Clinching is a big problem for me and made a groove into my gum from the pressure. Pressing hard is another trigger for me now. I thnk ATN is my main diagnosis being there 90% of the time and feeling like my face was hit with a baseball bat forehead, cheeks, eye, nose and ear down to my throat even. The heading for these memebrs is primarily chronic pain and you fit that description. Read somemember profiles, make friends and you will find several just like you..or close...So welcome to Living with TN and join in...!!! I am also on Facebook as Donna M Freeman with Christian based entries there. Keep in touch and be well...D

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elaine48 said:



Donna M said:

Thanx Pastor Laura..This is a great place to be while in the diagnosing stage. I am there as well with many cranial neuralgias, TMJ and Earnest Syndrome too. Clinching is a big problem for me and made a groove into my gum from the pressure. Pressing hard is another trigger for me now. I thnk ATN is my main diagnosis being there 90% of the time and feeling like my face was hit with a baseball bat forehead, cheeks, eye, nose and ear down to my throat even. The heading for these memebrs is primarily chronic pain and you fit that description. Read somemember profiles, make friends and you will find several just like you..or close...So welcome to Living with TN and join in...!!! I am also on Facebook as Donna M Freeman with Christian based entries there. Keep in touch and be well...D

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Donna, I certainly had and have no intention of "crushing" anybody. I merely wish to suggest that sometimes there is more positive benefit in directing one's energies toward personal pain management, than in seeking legal redress. We all have just so much energy. And for chronic pain patients, that energy can be sorely tried by just the "normal" daily activities. Stress is also a negative influence on pain sensitivity.

No two people or cases of face pain are the same. Some (in my experience, generally very few) people are successful in gaining vindication and financial redress through the courts, particularly where only one neuropathy is operating and is confirmed to be a consequence of surgical or medical error. Many more patients are successful in obtaining at least a minimal level of financial support through the US or private Disability Insurance systems. So this isn't a matter of denying hope to newbies or others. I simply think you personally may do better for yourself by using your energy and thoughtfulness to find better care, rather than getting engaged in the highly-stressful legal process.

In any event, I wish you well in whatever choices you make for yourself.

Regards and best,

Red

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I expect my surgeon to take responsibility for a 20,000 surgery that did not do the job. I still need to get pressure off of some of the muscles involved. I am still searching for a competent surgeon for the skull base or neck. One day out in the rain and then in and out of air conditioning caused a pain episode when we came home. Multiple nerve roots went off, down to the pelvis and by the sphincter muscle. I suffer no guilt in taking pain meds and I am still looking for other options. I dont think retesting will show anything new and I wonder if my surgeon is deterring from his responsibility. Involviing another surgeon who did not perform the surgery is difficult. I will most likely be in NY to see some new doctors and others that I know from when this started. I know the graft issues really disturb the profession. I dont think that there is much else that I can do. When things do not show on tests, one faces a major problem.

Can neuromas be seen on cat scans. I know Hopkins does remove them.