Pain & Complications with Existing Dental Work prior to TN

The number of resources for the most complicated cases seems to be dwindling. For each doctor I see, I get a new interpretation and yet another treatment to try. After spending thousands of dollars out-of-pocket to see the best doctors in my area i have started to narrow it down. I live in Beverly Hills and have access to some of the best doctors in the Country. I don't to manage my pain, I want to try and find the underlying reasons, 3 years into my ordeal beyond just toughing it out.

I am a single dad with two sons in high school. I have been on short-term disability, State Disability, and using a LTD policy for now. I have been denied Social Security, had the appeal denied and will be going to Court this year, finally, where I expect to win although it is nothing to celebrate.

I had to leave a wonderful job of 13 years where I made $200,000 annually. I have been living off my savings and the LTD. I don't ask for pit on my finances but it is a strain. Both of my kids will be out of the house and off to college not of their choosing based on our limited resources. I am ruined financially and at 51 worry more and more about my future mental, physical and dental health.

I have a severe case of trigeminal neuralgia, acute migraine syndrome, SUNCT, Herpatic episodes inside my mouth and Extreme Depression. I take 20+ pills a day. I went from an active and healthy life to a recluse. I don't leave my home. I have so many triggers to avoid it isn't worth it. I stopped going to the gym five days a week as soon as I gained 50 pounds. It has been almost two years since I have even tried anything active, sex or intimacy. I have my kids and two dogs to keep me from heading off to the woodshed with the shotgun (kidding), When the kids leave I plan on moving 700 miles North to the Redwood Forrest and living off the grid for a while. I look good (not my words) and don't look sick according to those around me. I am a big fat man who brushes his teeth and takes a shower once a week to avoid the pain.

I have had 6 surgeries, every drug imaginable, every off-label hail Mary. There were stent and retainers, nerve blocks, thermo needles etc. I have had MRI's. EKG's, EEG's,, cone beam scanning and more. The Botox for the migraines caused other problems. Many of the treatments make it worse.

My primary doctor, who wrote the book, literally, on these diseases is stumped. We are both frustrated. He feels that time may help but it would tale 5-7 years with a 70% chance of getting this under control. I have seen three other like minded specialist and they all agree on some things across the board. They feel my current doctor should be doing more, he can't. He is an MD and a DDS which really helps. Everyone agrees that I have a several traumatic injury caused by 16 dental appointments I never needed and $20,000 to fix a tooth that had to be pulled. The new doctors have diagnosed my with Complex Regional Pain Syndrome, common for those soldiers coming back from war. It also is similar to feeling pain in limbs that are amputated. The agreement, from all doctors, is that my brain and Central Nervous System no longer communicate properly and my brain needs to be reset.

How you reset your brain? There is 100% agreement I should trying ketamine-infusion-therapy at USC. I met with their pain psychologist to see if I could handle it, a cardiologist and stress test to make sure my heart could take it, and several doctor meetings. For 30 days I would be an outpatient receiving a 4 hour IV drip of ketamine. The idea is to get your body really high and disassociate the pain and reset the brain. For 30 days I would be hallucinating, medicated and unable to be left alone on my home just for starters. I am approved but do not have that type of support system. Three doctors agree for facial mapping. They map the pain on your face, attached electrodes and stimulate the nerve. It is like a pacemaker for your face. If it works, after a week they surgically place the electrodes under your skin. I just don't see this for me. All of the doctors, except mine, agree that I should be on stronger medication for pain. The Percocet 10/325 I take 6-8 times a day, 2-3 together, barely allows me an hour of comfort.

I told you all this for now main reason. I am just setting the depressing and suicidal tone! My #14 tooth was destroyed in several botched dental transactions. No one was malicious, just used poor judgement. If you go the dentist in pain, the drill and whatnot. They don's suggest a doctor or neurologist until it is too late. My #14 tooth was pulled. I have such extreme burning, boring, gnawing and piercing pain at the extraction site, that also triggers migraine and seizures every day. I wake up in pain and the second I swallow, drink, chew or getting kisses from the dogs, the pain just gets worse and worse. Oddly, I feel the pain equally, if not WORSE on my #13 tooth and back molar. I understand the pain moves to the next possible teeth. I have asked my doctor to remove #13 and the back molar and use a partial but he says no. Here is the question I have been building up to. My #13 tooth and back molar have fillings. When I am having many of my episodes and my teeth and burning or gnawing, when I tough them with my tongue they feel like razors. I am sure I will cut my tongue. I suck and massage the teeth. I suck so hard I am surprised I don't pass out. As I explained to me doctor, my teeth do not recognize the filling material. I am actually trying for hours at a time to suck out the foreign filling. I feel the area under the filling, not the filling. It has been three years since my doctor will allow me to see a dentist. My beautiful teeth are stained and chipping. Mu jaw does not line up correct any more and I have to hold me mouth to gentle close it. I was wearing a night retainer to keep my teeth from moving but that became a major trigger. Lately, I can see how the teeth on my upper left side have all move about 1/8 of an inch. I never had gaps or spaces.

So. If my teeth are moving at the injured area, worse yet, moving towards the injured area, could that not be causing some of my problem. Also, with the fillings, has anyone else had this problem? Any solution? I think that the fillings are adding intense pain that would not be present if I did not have the fillings.

My life is falling apart around me. My children are paying a high price. I have no control of my life and a bunch of people I have net net are looking over my medical records they don't understand. My psychologist and psychiatrist have both declared me mentally incompetent due to pain. Everyone, even Social Security, agrees I can no longer perform skilled labor. The "fight" is over unskilled labor.

The grass is not greener on the other side. I fear I am going to be homeless on the street,

Any thoughts?

Thank you.

Hi Richard,
Not sure that I can answer any questions you presented, but I did want to bump this up in hopes someone else might have some suggestions.
I also just wanted to send you some (( hugs )) and let you know you’re not alone…many things you mention in your note I can relate too and have experienced.
Although we all share similarities with TN, our journeys are unique to us individually.
I know I find comfort knowing that I’m not alone and others truly understand the struggles, life changes we go through, and endure .
Positive thoughts, my friend…

There are a lot of factors in your narrative, Richard. I'm not really sure quite where to start. But from 19 years of talking with chronic face pain patients, I'll offer what experience I've heard.

(1) You will probably never know with certainty exactly "how" your dental injury translated to your ongoing pain conditions. the mechanisms involved in oral neuropatthy, migraine and SUNCT are still for the most part unknown to medical research.

(2) Many facial pain patients report a kind of "pain migration" from the primary site of a dental extraction to teeth on either or both sides of the socket. Dental error is by no means the only cause of Trigeminal Neuralgia or Neuropathy, but there is ample evidence that it is one of the causes. And your doctor is very likely on target with his recommendation against further extractions in the absence of any X-ray evidence of abscess or cracked tooth. I've talked with people over the years who had seven or more teeth extracted, as a dentist "chased" a vaguely formed belief that infection was migrating up or down the jaw -- only later to conclude that the original pain and its development really weren't dental in origin.

(3) It is likewise common for people to develop shifting trigger zones and parasthesias (displacement and distortion of sensation into tingling numbness or a sensation of "drawing" in the mouth or elsewhere). As nearly as I can tell, these sensations really aren't related to fillings or displacement of remaining teeth, unless somebody has done a root canal on you and used Sargenti Paste to back-fill the root. Sargenti is no longer used because it includes a formaldehyde-family component associated with nerve damage. The evidence that fillings are a cause of chronic nerve pain, is really not consistent or reliable. Evidence that anesthetic injections into the Lingual nerve could be, seems stronger.

(4) I believe you have described one variation on Peripheral Nerve Stimulators. I've heard reports both here and elsewhere, from patients who've had improvements in the management of their pain by such means. Also heard from some folks who tried them and didn't get results. I really can't generalize as to how often each outcome occurs, pro or con. But I know that Dr. Ken Casey (co-President of the US TN Association Medical Advisory Board) has implanted a number of peripheral or gray-matter stimulators, and seen some success.

(5) Ketamine seems to be the current "big gun" for suppressing breakthrough pain. It has non-trivial risks, and it's unwise to go through an extended treatment with it unless you have a knowledgeable support system or you're prepared to spend some time in a hospital under supervision. I do know that some people have reported success in getting stabilized with the help of such treatments.

(6) I'm not going to second-guess your docs on what meds you should be using. I do know that with your Percocet dosage as high as you report, you may be at risk for narcotic rebound headaches. Rebound pain should be discussed with your care providers, I think. There is at least fragmentary evidence that CRPS can be a mis-diagnosis for medication-related rebound pain in some patients.

I'm sorry I can't offer you a clear or reliable way out of the quandry in which you find yourself, Richard. There are too many things going on, and I'm not a physician myself.

Go in Peace and Power

Red Lawhern, Ph.D.

Resident Research Analyst, LWTN

Thank you both so much for your thoughtful replies, personal experiences and medical insight. It is difficult to see your life, career, passions and security stripped away for a minor pain that turned into hell. I will read again in the morning and reply to specific comments. Thank you very much.