I am Diagnosed TN Little Brother - trigeminal neuropathy and TMJ

Welcome New Member Introductions
1

Hello,

First time posting! I am a victim of Dentists yet again hitting a nerve and damaging it leaving us with lifelong pain and suffering. Dentists then wonder why they are hated.

I am 32M, healthy before my infamous dental appointment last year. I was living the life I dreamed in Sunny Southern California. Till that day, my 2023 was just me trying to find a solution to my pain. My work, life and enjoyment suffered considerably. I always wonder what I could have achieved in 2023 if it was not for that pain the dentist caused.

The orofacial pain specialist confirmed the following diagnoses:

1.	Trigeminal Neuropathy from Tooth 18 Filling:

Dentist number 1 negligently performed a seemingly routine filling procedure on tooth 18, which escalated into a root canal, resulting in damage to the trigeminal nerve, causing excruciating and relentless nerve pain. This constant pain has profoundly impacted my daily life, leaving me mentally and physically drained and struggling to cope. I was diagnosed with trigeminal neuropathy, and have been trying to mitigate it with a combo of capsaicin 0.25% cream and orajel.

2.	Speech, Bite, and Tooth Cramping from Occlusion Equilibration:

Dentist number 2 worsened my condition by performing an obsolete and damaging procedure known as occlusion equilibration. This ill-advised intervention not only failed to provide relief but also exacerbated my symptoms, leaving me with cramped speech, bite, and tooth alignment issues, further complicating my ability to function normally.

3.	Temporomandibular Disorder (TMD) from Root Canal by Dentist Three:

Dentist number 3, an endodontist, proceeded with a root canal on tooth 18 without considering the potential implications for my underlying TMD condition. This decision exacerbated my pain and contributed to the deterioration of my overall dental health, compounding the already devastating effects of the prior malpractice incidents.

The relentless nerve pain, coupled with the physical and emotional toll of these traumatic experiences, has left me questioning my quality of life and struggling to find relief. I am in constant agony, unable to focus or engage in daily activities, and facing significant mental and emotional distress as a result of the chronic pain I endure.

I always think of my life before these incidents, how happy I was. Even before the root canal, I was managing and coping with the pain. The root canal was not really necessary. My problem was nerve pain, not tooth pain. The root canal gave me another condition on my right side, TMJ.

I am now contemplating taking drugs. I am going to get a second opinion from the University orofacial pain professor. It will be a costly appointment, but I want to keep going, I have plans to go back to school and get a masters in AI. That dream is being overshadowed now with my pain.

I have spent over $5000 so far in expenses. Imagine that money we all have spent because of a Dentist neglect, imagine what we could have done with it.

1 Like
2

Hey Alihope,
Welcome to Ben’s Friends.
One of the many pseudo diagnosis I have received is TN. I say ‘pseudo’ because my primary issue is a low grade brain tumour which has been operated on repeatedly, 6 times so far, and only a couple of months ago I was told I’d be needing further neurosurgery. Happy, I was not.

Then a few weeks ago the glands in my neck swelled up and I was told it was dental. The dentist removed ALL of my lower teeth, but the glands didn’t resolve. Then they decided it was my tonsils and ripped them out. I’m still recovering from that little drama now. Happy, I am not.

The glands have resolved, which is good, but yesterday I was to have a consult with the hospital neurosurgical team and because I’m ‘in recovery’ post surgery I now have to go back through and repeat all of the scans again as seemingly “It may all just resolve itself…” or so I’m told.

I have found, for me personally, the trigeminal nerve controls the whole face with branches spreading off to the forehead, the upper jaw and the lower jaw. Any damage anywhere along the nerve tree can trigger nerve neuralgia anywhere throughout the tree. As you can imagine, with the medicos opening my head repeatedly AND removing all of my teeth, the likelihood of my tigeminal nerve NOT being affected is almost impossible. I have also found that once such a diagnosis is made it is often referred to repeatedly as We could try ‘X’ or we could try ‘Y’, but nobody really has an answer. They’re all just ‘having a guess’.

I’m sorry to say here, I don’t have the answers. My recommendation is try everything. That one thing you think ‘Nahh, that’ll never work’ could just be your ‘key’, so try them all. For some people a nerve block can work. For some medications may assist. But I do have to say this is not a one-size-fits-all type situation. For me I had to learn the best way for me to manage. Sometimes that’s medication, sometimes I need a dark silent room. Sometimes a change of environment is needed or a change in activity. And even for me, myself, it’s not a one size fits all, I need to vary my approach to whatever today throws at me. No 2 days are ever the same. I can’t say “Well, at 2pm I’ll be symptomatic…” it simply doesn’t work that way. I’m often explaining it like this:

“Some days I can leap a tall building in a single bound, but then some days I’m lucky to be able to crawl out of bed” and I need to mix’n’match my management tools to my needs on that day, at that time.

It’s not easy and anybody who tells you it is has NEVER been in this situation. We know that because we live it too.

Merl from the Modsupport Team

3 Likes
3

I have had trigeminal neuralgia for 20 some years and it is very much a struggle. I have had a nerve block gammon knife to the back of the head, gammon knife to the right cheek MVD electric stents put in my nerves in my face and probably about 7 to 10 different medication and I have found two that work. Good enough doesn’t kill the pain never will, but at least partially livable. I cannot go to parties or restaurants for a long period of time, because the noise starts hurting me because I did lose my hearing after the brain surgery in my right ear and the pain is never gone away except for six weeks after the MVD was done, so I thought it was gone, but it came back and never went away, but I’ve learned to live with it and I know there’s other people that are worse off than I am and yes, I was very upset for about two years after I received it but like I said, I’ve learned to live with it and you learn to cope the best you can and it’s very aggravating and sometimes it may not show up with the pain and beyond, but most of the time it shows up at least once if you’re there for about five hours but I try not to think about it because this is my life and there’s nothing I’m going to do about it except for medication and I hope the best for you. I hope you can find something that works for you to give you a decent life I’m 69 very happy that I have five grandkids and one great granddaughter to enjoy , I wish that I didn’t have this pain so I could enjoy my great granddaughter better but I do with what I can and like I said there are people worse off than I am. They’ve got no legs. They’ve got arms. They’re blind can’t hear things like that so yes, I have pain and I can maintain it , halfway decent and do believe it was a pulling a tooth that may have been wrapped around the nerve that pulled on that nerve that caused the trigeminal pain but they’re not sure you never know if it’s a tooth or it just happens. It’s a strange disease that they don’t know a lot about , I hope the best for you

2 Likes
4

I am so sorry to hear your story and had a similar but different experience, lucky 2 different dentists did not recommend root canal. It took 4 years 3 unnecessary procedures yes plus $5000( 2004-2008) and finally was correctly diagnosed. Medications were a godsend until I needed higher dosages. I had an MVD in 2008 lasted 3+ years then found a TN specialist for the 2nd( 2012) and been blessed to be pain free for 11+ years now.
I was lucky the 2 nd dr was in my town( Tucson) but was considering going to the top specialists wherever they were. Consider meds to get relief and possibly procedures. Seek experts and be open to advice.

3 Likes
5

I was diagnosed with trigeminal neuralgia (TN) approximately 15 years ago. I initially thought the pain I was experiencing was from a tooth and went to my dentist several time for him to check the tooth. Each time he examined me and told me nothing was wrong with the tooth. I finally told him it hurt even if I very lightly touched my skin above my lip. Then a light bulb went off for my dentist, and he told me I probably have TN. My dentist referred me to a neurologist. My neurologist confirmed the diagnosis. I tried numerous therapies and medications throughout the years.
Approximately 6 years ago, I decided to have microvascular decompression (MVD) surgery Nothing was working anymore and I did not want to go on disability, but performing my stressful healthcare job was getting very difficult. I did a lot of research to find a center of excellence for cranial surgery. I chose Dr. Raymond Sekula, UPMC, Pittsburgh, PA. I traveled to PA from IL.
My MVD surgery was very successful. Approximately 10 weeks after surgery, I was pain and medication free, and I still am today. My only regret was that I did not pursue surgery years earlier. The surgery gave me back my life. I am forever grateful to Dr. Sekula and his team.
I wish you well and hope you find the therapies, medications or procedure to assist you with TN.
Please Note: Dr. Raymond Sekula is now in New York at Columbia, Neurological Institute of New York.

1 Like
6

Tucson is my home town:)
What is the doctor’s name if I may ask?

7

I have been going through god know what cause nobody can give me a proper diagnosis on why my gums start too burn so bad every day for 4 months without any relief. I spent 600 dollars on a specialist to tell me what am I dealing with but i really didn’t get an answer. She softened my mouth guard I wear at night from clenching but it still doesn’t tell me why my upper gums are on fire. The good news is that my gums have been in remission for almost a year now and it hasn’t come back. I still have a cracking jaw everyday but that’s not a big deal for me. The burning gums is the biggest problem I have once it comes out of remission. It lasts a good 4 months daily until I sleep. When I wake up it’s fine. But as soon as I get out of bed it starts right away when I start walking. The pain is 10 for sure. I’m my doctor did tell me when it comes out of remission use these pills for 10 days. If they don’t help the burning then try a different kind she gave me. Thank god I have not had too use them yet cause it’s still in remission and I pray it stays in remission until the day I die. The pain is unbearable and I don’t know how I did this 3 times in 5 years. I just don’t want this too come back. I have no idea what triggers it.

1 Like
8

Dear Alihope, after reading your story, I want you to know that you are not alone in this horrible family of pain! None of us wish this on anyone, we are constantly sharing our stories, and knowledge of our situation. After 35 years of dealing with TN, it is definitely different every day. Continue to reach out, share your journey, and don’t let anyone tell you that “you have to learn to live with the pain.” There are always other meds that may not take away all of your pain, but can at least give you a better quality of life. Good luck, and thank you for sharing.

1 Like
9

Abhay Sanan- center for neuroscience. I remarried & my name was Linda Faye. He is amazing! Please let me know if you contact him. If I can help you just reach out… :blush:

10

Hi I was diagnosed with TN and TMJ after a filling gone bad. For 5 years I suffered in the worst pain. Finally at the end of my life a doctor just thought this had to be something rare because no medication could touch my pain. As it turned out once I had a ct of my neck with out contrast I was diagnosed with Eagle Syndrome a very rare conduction where a ligament turned into a bone and with my head turned in the dentist chair the bone first pierced into my trigeminal nerve. This pain then lead to TMJ and difficulty with my head turning and tight muscles. Surgery is the only treatment for Eagles and an experienced doctor is necessary. To learn more about Eagles there is a group that you can learn from in this forum. Here’s a link Living with Eagle Syndrome

11

How long after the dentist performed this procedure was it before you started getting symptoms?

12

My symptom started when the lying dentist said he just needs to do a very small cavity filling. It happened from him applying local anesthesia.

Then about 7 months later I was still having pain. I ended up getting a root canal, from another lying dentist who just did a cold hot test and said yup you need a root canal. I do a root canal, and my symptoms got worse because of all the needles and my mouth was open for an hour. So now I have TMD and trigeminal neuropathy.

13

This message is for everyone that has trigeminal neuralgia. No matter how it happened to them. My diagnosis was after I had CyberKnife that damaged the nerve by my brain stem. After several years of pain so bad in my left eye that it was throwing me to the ground, I finally went again to the Mercy hospital in Rogers emergency room and they finally hooked me up with a neural surgeon in India via a a video where we could talk. He put me on Locosamide or vimpat and I’ve been on it for 2 years now. I’m taking 250 mg a day so that’s 100 morning and night and 50 in the afternoon.My left eye is still messed up but I keep it clean and and put drops in it three times a day. I found that using a nasal spray ordered by my doctor kept the nerves from flaring up via the sinuses.
I feel real bad for everyone that has been struggling with this deadly disease. And I hope that I have helped with information. Check it out

1 Like