Saturday, January 9, 2016

Happy New Year, 2016...Updates, TENS Units, & more

HAPPY NEW YEAR!
I hope you all had a wonderful, pain-free  New Year's celebration (or at least numbed by champagne). My only new year's resolution is to lose 10 pounds, (or maybe 5...ok, 3, whatever, I'm working on it!). What about you?

I am glad to see 2015 end...In a nutshell, it was nasty; I finally found a new job in 2015 (yay!), which led me to I relocate to a new town 5 hours away. I sold my house and left my friends behind to move to a new life in a new city, and within ONE WEEK of starting the job, my new boss was fired (boo!), and that company basically just went berserk with multiple restructurings and layoffs...ultimately after a few months, I was let go, too. Unemployed again, and now in a strange town. :/

Fortunately, I still have an active Real Estate license obtained in 2005, which has served as a nice fall-back position... the tricky part is finding customers, and there is no salary, it's 100% commission, so no customers = no $$.  Back to the grind of sending job applications all day long and resumes, resumes, resumes...ad infinitum...

MY INJURED STATUS, SIX YEARS LATER...
December 30, 2015 marked the 6 year anniversary of my lingual nerve injury. When I went to have a cavity filled just before attending a New Year's Eve party, back in Dec, 2009, I never dreamed that I would end up permanently injured, and blogging about it for six years, just trying to help others through the terrifying and excruciating months/years that I experienced at first.

In retrospect, it has been immensely helpful having all of you to listen to my my advice and encouragement. It helps to know that I may be helping others. This injury can be very isolating; no one's ever heard of it, or can see it, or knows what to do about it. So, having this little meeting place on the Internet for all of us has been a great outlet with unexpected benefits.

WHAT ABOUT A TENS UNIT FOR PAIN?
A new doctor recently suggested I try a TENS unit on my face, where I have still have deep, aching pain on the left side. Hmmmm...you know I'm not excited about possibly making something worse.

TENS stands for Transcutaneous Electrical Nerve Stimulation... TENS machines are small and easy to use, and you can easily have one in your home. They work by sending stimulating pulses across the surface of the skin and along the nerve strands to help prevent pain signals from reaching the brain, as well as stimulate endorphins, your body's own natural painkillers.  

But, here's the catch: sometimes, TENS can actually make pain worse. Not usually, but it does happen. Feel free to comment if you have any knowledge of this treatment. TENS units are often used for lower back pain, so some of you may already be familiar.

What are you doing for pain that's working? I hope you are seeing some progress. xo - jane :)

62 comments:

  1. Pretty good post. I just stumbled upon your blog and wanted to say that I have really enjoyed reading your blog posts.
    how does acupuncture works

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  2. Hi folks. Just came across this blog as I lay in bed trying to make sense of this pain. Here is some background on MY story.

    When I was a teenger I had braces. The aweful kind with lots of metal and rubber and pulleys and jackhammers and anything else you could throw in there - or so it felt like anyway. Fast forward to 5 months ago( 25 years old) and I have lost my Invisalign retainers to my newly adopted dog *sigh*. Having gone my whole life being told I had a small mouth, I wasnt exactly surprised when my teeth began to shift almost immediately. But I had just moved to a new city and started an new job so my teeth were just not on top of the priority list. Fast forward yet again to 4 weeks ago. Finally fed up with my wandering teeth, I made an appointment to see an Orthodontist. One awkward tour, a headshot and several xrays later, the Dr sees me. She refers me to a dentist before she makes my new trays for Invisalign. She also points out that my lower wisdom teeth look problematic and will likely need to come out. Off to the dentist I go. Where I am then referred to an oral surgeon because my wisdom teeth are causing damage to my molars and are also dangerously close to my nerves. Ugh... So off I go to the oral surgeon.
    He seems concerned. He takes a CT scan to better guage where exactly my nerves are lying in relation to my horizonally impacted third molars. (Side note about how wisdom teeth are in no way wise) He then lays out my options. 1. Do nothing and deal with dead second molars and infected wisdom teeth in ten years. 2. Remove just the crowns of the third molars, but leaving the roots is risking and may result in him having to take them out a week later anyway. 3. Just remove the whole wisdom teeth. I choose option 3. He explains to me his concern - that my teeth are more mature and that the roots are very close to the lingual nerve. He seems sincere when he says he'll do his best. He says my chance of damage is 15-20%.
    So here I lay. My surgery was last Friday and it certainly knocked me on my ass. They sent me home with my whole mouth and tongue still numb. The next morning my tongue and left side had come back, but my right side had not. It still hasnt. For the past week my whole lower right lip has been numb yet sensitive. My right cheek is the same. My right teeth ache so much that I can't sleep and I'm fairly certain that I've lost some sense of taste (hard to say since my diet has been very limited).
    Im guessing that the lingual nerve on my right side is damaged. Im hoping the pain means ifs healing but I really dont know. Thank you for your blog (other google searches have been less than helpful). I'm just starting my journey and I dont know if this will heal or if this will be my new life. Thanks for reading and any feedback or advice is greatly appreciated. Stay strong. -Ashleigh

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    1. Ashleigh I do hope you are feeling less pain and numbness. It is still early for you so you have excellent chance of recovery. How's it going? -Jane

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  3. I wanted to ask you some questions regarding your experience!

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  4. I have lingual nerve damage. In reading the literature and this wonderful blog, I came to understand that if within one year the pain is not fully gone away, then your nerve damage is permanent. Am I correct?

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  5. I have lingual nerve damage. In reading the literature and this wonderful blog, I came to understand that if within one year the pain is not fully gone away, then your nerve damage is permanent. Am I correct?

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    1. Glad my blog is helping you. I found so little info out there, and it's a very scary and puzzling injury, so I started blogging, and have been sharing my experience since 2010.
      I don't know if 1 year is the magic number. I was actually told 4 months is the first milestone they look for, then a year. After that, progress can still be made, it's just extremely slow. How long has it been for you? Do you have any numbness, or just pain?

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  6. I have had it for 3 months

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    1. 3 months is still a fairly short time. I recall feeling the worst at around 3-5 months post-injury. Your best bet is getting steroids if you still can, as soon as possible. It may not cure you, but it will help a bit. Hopefully you are fully healed by now but if not, I hope the blog is useful. We have a Facebook page, as well (search on Dental Disasters or lingual nerve damage)

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  7. I replied. Hopefully, it did not get lost in space.

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  8. Crying as I am writing this because it makes me so sad how some dentist put others lives in their hands and dont do their absolute best to avoid this injury. After 8 months my tounge hurts so badly I can't cope, the numbness and no taste is not even the worst part, it is the pain for me. Do you also have pain?

    For me it feels like my tongue was cut in half and then sewn back together too tight, it feels like muscle spasm and burning and like if you would get salt in a open wound. Its so many weird pain sensations it is hard to even describe.
    I am thinking of surgery since all doctors think the awful dentist actually cut my lingual nerve off with the drill.
    Is your stated to be cut off or damaged?

    I just do not know where to look for a repair surgeon. I would go anywhere in the world for a skilled one, but in Sweden where i live there are non!!

    Lots of love to you and strength,
    L

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  9. So sorry to hear of your pain, but glad you found this blog! It is incredible that this injury is so devastating and becoming more common and yet, nothing is done about it. Dentists hurt people every day and have zero liability. Have you read through some of the medications I've tried, some of these may help. Mine was not cut in half, only "nicked" or "bruised" (which makes it sound far less painful than it is, but remember we are talking about nerves here, firing off constant electrical signals), so I never had any numbness, only pain. I was told surgery would likely only make things worse in my case, so that's not always the answer. Find a university or teaching hospital as a starting place. Do let us know of your progress.

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  10. I have sent a post that has never been posted. Please advise that you are receiving my post.

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    1. Hello, since your comment came in under "anonymous", which many do, it's impossible for me to track but I'm guessing it was just a delayed posting. I can't always login every day, so posts may be delayed at times. I do moderate comments to remove any inappropriate or spammy. Thanks for posting!!

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  11. Jane: I have soreness on the tip of the tongue and it moves around the the side and back. Some burning as well. I have had this for 3 months. too, my mouth feels dry especially at night. I now use a mouth wash for dryness and it helps a bit. Thanks.

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    1. Sounds familiar. The dryness for me is constant. The upside of that is I get more than enough of the water everyone recommends people drink more of!

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  14. My pain has been since the end of 2010. I am on a small dose of clonazepam at night, and oxcarb during the day. For all of this time, I have been dizzy and am now dealing with a sick stomach all day long. I honestly don't know what to do at this point. The pain is just too much and I am desperate. I have seemingly tried everything (lyrica, gabapentin which I still swish the liquid), etc. Has anyone done surgery this late in the game to fully cut the lingual nerve to try for numbness? My oral surgeon fears that it could make things worse. I would far rather be numb than so suffering so many side effects along with still having pain. Thanks much. Allyson

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    1. Allison, I have heard from some who had the surgery done. Typically they see improvement for a time, though not permanent. Try posting your question on our Facebook page too, if you haven't already. I couldn't stomach those meds, either. I am no longer on anything but a steady low dose of painkillers.

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    2. Hi Jane, I didn't know about the FB page...will check it out. I am not going to have the surgery as it's too much additional risk. What are you taking now for pain? I am still on a light combo of oxcarb, cymbalta and clonazepam...perhaps takes the edge off but I still have a lot of pain. Interestingly, I have noticed that it worsens with bad weather (rain/snow). Going on 6 years:(

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  15. Has anyone gone through with the surgery that is supposed to repair the nerve damage? I had my wisdom teeth taken out in February and was just reported my damage is permanent. I am supposed to get surgery to repair in 2 weeks (June 10th).

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    1. Annie, see my note to Allison, above. How did the surgery go, what type did you have?

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  16. Hi Jane,

    Its good to read your blog. Here what happened to me -
    I had a numbness and tingling on my face already (but very little). And then a sudden ear ringinig set in. I went to ENT who told me that my tooth are in pretty bad shape and its happening from there. So went to surgeon and got three wisdom teeth removed. Things started going downhill from there. I developed more numbness on my nose, stiffness in my jaw, inflammed gums, burning tongue almost everyday. It has been almost a month (5 May) but symptoms are just going bad. I even had itch all over my body. Is there a hope ? Can the nerve heal ? Or its all over ? Scared and need help, Mita

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    1. This comment has been removed by the author.

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    2. Mita, Based on your description of sensations all over you may want to see a neurologist. Hope you see some improvement soon. In the meantime, do keep us posted. :)

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  17. Remarkable blog! I have no words to praise, it has really allured me.
    stop sciatic nerve pain

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  18. Hi guys!

    I'm from italy and about 9 months ago I had a LNI! My tongue and my throat burn (dysesthesia - so spontaneous burning that go away if you drink, eat, chew), not so much but burn. I think I'm on very slow improvement but don't know if it could improve totally.
    I'm getting:
    acetyl carnitine (it stimolates NGF -nerve grown factor- so regeneration)
    alpha lipoic acid (it is involved in the regulation of the neural channels of pain and it revert and prevent oxydative cellular stress)
    vitamin b, almost entire complex

    yesterday I started a cure based on palmitoyl ethanomalide it is an endogenous fatty acid amid that may produce an action on neuro inflammation and a consistent pain relief at about 10/20th day of treatement. It is used in sciatic nerve pain, trigeminal neuralgia and in such dramatic neuropatic pain

    I want to try also ketogenic diet (in italy we applied it to cluster headache/migraine/epilexy and in the management of pain. ketone bodies are involved in neuroregulation and neuroprotection and also, MAYBE, on neuroregeneration)
    and i want to try also LLLT low level laser treatment. I don't know if anyone except Jane has tried this tecnique but results and pain relief depends on the kind of laser in particular: color so wavelenght, duty cycle, frequency and power density of the laser. (best results occur when the wavelenght is about 800nm red, duty cycle around 10%, frequency from 50 to 100hz, power about 10 J/cm2) So laser treatment isn't so simple as a light pointed in our mouth.

    there are also in the patient with hypersensivity and dysestesya some evidence that there is a scar tisue entrapment of the lingual nerve (about 50%) in this cases a magnetic resonance neurography at 3 tesla (1.5T may not help to identify lingual nerve because of its calibre) may help to identify if so.

    these are ALL the things (exept psycodrugs that I don't take for principle) that in 2016 we could do to evaluate and try to obtain improvement

    Jane, I've read all your blog but I haven't understand if you have dystesthesia (spontaneuos burning) or hyperestesya/allodynia (burning evocated by touching tongue, throat or throat specially when talking, eating etc..)

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    1. I have the former; my pain is always there but the burning is actually less when eating. On the other hand, speaking is very taxing, and I must drink water and suck on Halls Refresh moisturizing lozenges constantly. I also have chronic face pain in the lower left side, where the jaw meets the ear (like a TMJ patient, but without the TMJ)

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  19. Hi Jane,

    I've only had some time to read on some of your posts, and I can't say how relieved I am to not be the only one suffering from lingual nerve damage. Mine was a result of wisdom teeth extraction. Although I do not experience any pain, I have a constant 'pins and needles' sensation on my right tongue. Thankful to not be the only one... it is such a weird injury. Like you said, it's such a rare injury, and one that society cannot see, but sure enough, it's there. What are some things that you've found to be helpful in your healing?

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  20. Hi Jane,

    I've only had some time to read on some of your posts, and I can't say how relieved I am to not be the only one suffering from lingual nerve damage. Mine was a result of wisdom teeth extraction. Although I do not experience any pain, I have a constant 'pins and needles' sensation on my right tongue. Thankful to not be the only one... it is such a weird injury. Like you said, it's such a rare injury, and one that society cannot see, but sure enough, it's there. What are some things that you've found to be helpful in your healing?

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    1. Trees, if you haven't yet, search back through the archives, where I list some of the treatments, medications, and lifestyle changes that have helped (or not helped) me. Some of that is also listed under my profile. Best of luck - jf

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  21. Hi jane,

    My process has been a little different. I had double jaw surgery and wisdom tooth removal at the same time while under general anesthetic. Im now 3 weeks post op and have a burning left side of tongue its very frustrating. What im wondering is it seems that almost 99% of people get the damage from the needle but seeing as i was under general anesthetic im assuming the lingual nerve was damaged from the extraction itself rather than the needle.

    This has been the hardest time of my life recovering from jaw surgery i also have low lip and chin numbness which i was made aware of before hand.

    The most unsettling thing for me is almost everyone that has jaw surgery recovers most feeling in chin and lip yet lingual nerve damage seems to have a terrible recovery rate.

    Id like to hear your opinion on whether you think i still would have had the needle even though i was under general anesthetic? Do you think my recovery chance is better if i didnt have the injection directly into the nerve like everyone else.

    Honestly this whole thing has been the hardest thing in my life but the burning tongue is the one thing im thinking will not recover going by everything ive read.

    I seen my surgeon today, he mentioned this happens to 1% of his patients due to the angle of the wisdom tooth. He mentioned i should recover feeling in 6 weeks as he "protected" the nerve and it definitely was not severed. He knows this as he has to remove the lower wisdoms as its where the jaw split occurs.

    He refused to give me steroids but im thinking maybe i should stand my ground before its to late.

    Any help would be appreciated :)

    Matt.

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    1. Try to get the steroids, if not from him, then see another Dr. I don't know of anything else that can help in this early stage following injury, and there is a short timeframe during which they are useful. Best of luck - jf

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  22. Hi Jane. I found your blog while searching for help - something I do periodically. I've suffered with lingual nerve damage since 1997! I wanted to share my experience with TENS. I was introduced to it by a dentist who diagnosed my problem as TMJ disorder. He assured me he could cure my pain with his K7 system, splints and TENS. Cost? $6000 and a year of my life I'll never get back. Once a week I would go in for an adjustment which involved minute changes to the orthotic device and then sitting in the dark with the TENS unit. Anyway, that whole experience is another story. BUT, I bought my own TENS unit for muscle relaxation that I used on my shoulders, back, etc. Just two weeks ago, while experiencing a bout of lingual pain, I had the idea of trying my TENS unit for this problem, myself. I hadn't done it before because the instructions on the unit advise you not to use it anywhere above your shoulders. I placed the electrodes at the TM joint and my digastric muscle which was particularly tight. The pulse was set to low. I tried to relax for the ten minute duration. Afterwards, I felt fine and then BAM! the worst pain period I'd experienced in years. My mouth was on fire. The inflammation was so aggravated that I was miserable. Miserable. On top of it all, I now have a nerve tic at my chin. I'm hoping this calms down. It has gotten better over time but I will never do that again. So, proceed with caution.

    Thank you for your blog.

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    1. Hi Susannah, Thank you so much for sharing your experience, and for joining the blog! I hope you are doing better. I did not do the TENS, after that one try, thankfully, though I recently had an unrelated set back, no clue why my teeth have started hurting more, to the point that biting into anything with my front teeth now hurts...maybe because I am deathly afraid of the dentist and long overdue for an appointment. My teeth are probably falling out of my head at this point.
      Happy Holidays :)

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    2. After a six-month wait, tomorrow I am seeing a neurosurgeon specializing in trigeminal neuralgia. I will refuse the standard medications and hope he has some new suggestions. I'm open to anything. The nerve tic that started after the TENS treatment finally stopped about two months ago. In the meantime, to cope with the burning, I've discovered Tea Tree Chewing Sticks. They are toothpicks infused with tea tree oil and help cool down the burning. I don't chew them so much as roll one around on the left side of my tongue, where my discomfort lives. They are intense so I only need one in my mouth for about 30-60 seconds. They also come in a cinnamon flavor but that just made the 'heat' hotter. I found them on Amazon.

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  23. AKA Sarah. (Don't have other accounts).
    Thanks so much for your very informative blog! I just found this and have been reading through everything--this fits amazingly with what I have experienced over the last 8 months! I knew I was in the right place when I read about gum chewing, my savior.

    I have constant pain on the left side of my mouth. It morphs throughout the day--from a classic toothache feeling in #13, to pain in adjacent teeth (upper), to burning and numbness in upper and/or lower gums, and often a burning/numb strip on the left side of my tongue. It gets worse in the evening, best in early morning, midday.

    On really bad days, I can have quite a bit of numbness in my mouth and adjacent cheek, as well as a "cold feeling" on cheek. On good days, it might only be a "itchy" feeling in my upper teeth, but it is ALWAYS there. This morning I had a new one--an irritated feeling in throat, that morphed into a burning strip going down left side of throat (along with adjacent tongue).

    It's not really clear what has caused this. I've had a ton of dental work over the last 8 months, starting with a tooth removal (#14) due to an abscess. I finally was referred to an oral pain specialist about 2 weeks ago, who diagnosed it as "trigeminal neuropathy" and I believe he is leaning toward it being caused by dental work. I'm supposed to have an MRI, still debating that.

    After lots of research and deliberation, I've decided that my best course of action at this time is to try and support my body in healing as best as I can. I'm very distrustful of pain killers, I know for a fact that anti-inflammatories make the pain worse, and I suspect opioids also do so. I'm trying to get through as much as possible without the use of pain killers (sometimes impossible, though I do seem to have a high pain tolerance). I'm not interested in any of the surgeries, or other types of drugs (just came off of 35 years of amitryptiline--related??). I'm working on tightening up my diet (Primal), adding supplements such as B vitamins and Omega 3s, alpha lipoeic acid.

    I see that many others are much worse off than me, as I can get through the day with just an irritating 2 or 3 level pain. This has really changed my life, made me more irritable, less social, often forgetful, distracted and not productive at work. And much more sympathetic to chronic pain sufferers, opioid users. I will update as I learn more and hopefully make some progress on healing this thing--I'm certain there is a way to do it, just have to figure it out, and I'm sure it will take a lot of time.

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    1. Really enjoyed your post. If you still visit the blog, please be sure to reach out.

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  24. Hello, Thank you everyone for posting. I can't believe others have and are experiencing the same thing as I am. I literally thought I was going crazy. I didn't go back to my dentist because I didn't think it was anything he did. December 14th 2016, I went to the dentist to have a crown seated. He had to numb the area in order to get it really clean and ready for the crown. When he first tried to inject the Novocaine he couldn't, he said my jaw was too tight. He came around behind me and massaged my jaw and asked me to move my jaw up and down and sideways. Then he proceeded to give me the injection, I remember there was a pop and a terrible burning, I don't ever recall having an injection feel like that before. The first issue I had was pain around my jaw, ear that runs down to the front of my face. A few days after that the burning started around the teeth and under the tongue. My mouth either has so much saliva I'm drooling or it's as dry as can be. My tongue also swelled up and was pushing so hard against my teeth that I have a severely scalloped tongue. I finally decided to go see my naturopath, she said that it's BMS that is caused by the dental work and that I'm also experiencing heavy metal toxin from the amalgam feeling leaking mercury. I'm going to start a heavy metal detox using a product by Metagenics called Metabolic Detoxification, that last for 10 days, after that I will take Metagenics MetalloClear for 90 days. I will keep everyone posted how this works for me. In between I'm Praying, chewing lots of gum, drinking lots of water and trying not to talk too much. Thanks for listening, I'm here for you all.

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    1. hi Michelle, how's going now. does it recover?

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  25. Hi Michelle,

    I am sorry that you are going through this. If it's early in the game, you still have time for this to heal. It can take six months to a year, and then for some of us, unfortunately, it's permanent. I do not mean to put down the person that said you have BMS, and that this is related to amalgam fillings. You have the classic symptoms of Trigeminal or lingual nerve damage, directly from that injection. Please, do not be led astray by anyone who has NO experience with this (and most do not). Do not waste your money or time on believing this is toxin-related. People live a life-time with amalgam fillings, and your pain was acute, and did not occur over time as it would have due to a metal toxin. Many of us have tried countless things to rid ourselves of the pain, and there is NO SHORTAGE of people out there who are willing to take our money to try to help, even if they are well-thinking. You have to be on top of your mouth pain, and this means seeing an oral surgeon if your dentist is not willing to help you with B-Vitamin injections and steroids. This said, if you start to notice less pain, chances are you will recover on your own. I am one of the ones who had no clue what was going on, did not get any help from my dentist, and saw an oral surgeon at the 6 month mark. By that time it was too late to do anything. I have been dealing with chronic mouth pain now for six years. It is not fun, has changed my life dramatically, and I so regret not standing up for myself with my dentist. I then spent a lot of money and time one things that were just guesses. Good luck..be your own advocate. Very few people know anything about nerve mouth pain, so you just have to be cautious.

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    1. I'm new to this as I had tooth #14 extracted 6 weeks ago. He stuck needle in roof of mouth saying this one will hurt. it did for a second. I had no symptoms until about a week later which I thought was Thrush due to being on Amoxicllan & eating a lot of dairy. Unjust remember a coating on my tongue & I think some burning. Nystatin seemed to be helping but not sure. 4 days later was put on Penicillan to have it changed to Augmentin 2 days later & added Peridex rinse. Mouth was burning so bad I couldn't take it so I stopped the Peridex after 7 days. Mouth still burned so I stopped the Augmentin after taking it 12 days. It's been 10 days since no Augmentin & I still have dry mouth burning tongue & burning roof of mouth. Some days are better than others but I always have some degree of it. last night sleeping was actually the best so far but now today I have a lot of burning again. Trying a compound rinse that an ENT prescribed. all the Dr's say this will go away in time & they don't think it's from Novicane needle. But I feel this will never go away. yes it's better than when I was on the meds bit it's still bad. I have so much anxiety depression and this has totally changed my life as I don't go anywhere much or socialize. I'm so focused on this. Does this sound like nerve damage caused from needle or damage from meds?

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  26. Its my wife who has this problem she has Parkinson's and we thought the pins and needles, tingling, numbness jaw ache and other mouth discomfort was due to that. When we mentioned these symptom's to her PD nurse she said she had never heard of that one ! Her Neurologist never said anything about it. She was diagnosed with PD October 2013.Her PD problems are mainly balance fatigue low BP stiffness and speech. Having searched the internet then putting 2 and 2 together we have realised that her mouth problems could be down to a visit to the dentist. We think about 6 months after her PD diagnosis she had a injection and filling and the next day a bruising came out on her face we went back to the dentist and she said it would go away, it did, then came the pins and needles etc. She has tried Lyrica bet with no effect, her Doctor does not no about the incident at the dentist but he will tomorrow we have an appointment !!! I hope this makes sense.

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  27. Hello everyone my name is Daniel Carroll and I also am suffering with lingual nerve damage I was thinking about looking into lazer surgery for I have heard of very good things about it ! Why doesnt anyone do this ?I feel like there is a lot I do not know about this procedure,but if it helps then why not?

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    1. Hi Daniel, I wish that I knew more the surgery and how it actually works. I have heard of the surgery that removes a piece of the nerve and the the nerve is forever apart. This surgery results in numbness, but with some people can leave embedded pain, much like that an amputee might have. I am six years post my accident, so don't believe that any surgery can work for me, though I wish that I knew. So much is unknown about lingual nerve damage. It would be great to know more about your situation, timing, what the surgery involves, the surgeon doing it, etc. Thanks much.

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    2. Hello Guys, Thank god I just found this blog that discusses lingual nerve injury!!
      I had my lower right side wisdom tooth extracted last thursday. The right part of the tongue is still numb. Im not suffering from any pain (only the swelled area of the wisdom tooth). I just cant feel or taste the right part of my tongue.
      I consulted a neurologist today and he told me that i have to wait for a couple of weeks!
      Do lingual nerve recover by itself?
      What should I do????
      Please help :(

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  28. Good news from me. I haven't read every post on this blog so, perhaps, this has been mentioned before. At any rate, I saw a new neurosurgeon who specializes in trigeminal neuralgia. He put me on a very low dose of naltrexone (1mg)- so low, in fact, that it has to be made for me by a compound pharmacist. If you google 'low dose naltrexone' you can see there is quite a lot out there about it. I'm happy to report that I started to feel relief within a week and my pain has been reduced by about 75%. I NEVER thought I would feel better.

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    1. Hi Susannah, how is it going with the low dose naltrexone after a few more weeks?

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    2. Hi! Sorry to take so long to respond. I don't get alerts when someone comments. I'm doing much, much better. It's really kinda miraculous. Still, I am going to do the Whole 30 diet plan to see if something I am ingesting is a contributing factor to the inflammation that remains.

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    3. Hello Susannah, Thank god I just found this blog that discusses lingual nerve injury!!
      I had my lower right side wisdom tooth extracted last thursday. The right part of the tongue is still numb. Im not suffering from any pain (only the swelled area of the wisdom tooth). I just cant feel or taste the right part of my tongue.
      I consulted a neurologist today and he told me that i have to wait for a couple of weeks!
      Do lingual nerve recover by itself?
      What should I do????
      Please help!!!

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    4. Wassim, I don't have any information other than what I have provided. Each of us is a little different. But I suggest that you continue to wait as your neurologist suggests. It has been too soon and nerve pain can take a long time to heal.

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  29. Hi Jane and everyone,

    How's everyone doing? I'm approaching my 7 year "anniversary" soon. My pain has sort of stabilised to a level 2-3, and comes and goes throughout the day. I even get periods of no pain sometimes! It's been really, really, really hard but I've accepted my condition and made peace with it.

    Sending good thoughts to everyone!

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  30. Chewing Pin Cushions” This would be my alias if I had to have one in this forum.
    (Btw, I tried to leave a reply a while ago--wrote a long post but I don't see it here so I'll try again.) I truly thought I was alone in my lingual nerve pain and an advocate found this blog for me--it's been so helpful to know there are others experiencing this and that I'm not alone--as much as I hate the idea of anyone else feeling this way. I describe my pain as most of you: feeling like I am being electrocuted constantly in the mouth. My lingual and trigeminal nerve damage happened in Oct 2013 by the attending dental surgeon at UCLA--my surgery was so botched; my story is a living hellish nightmare. I lost most of my teeth, had a "non-union" (break in my skull essentially) and had lingual nerve damage. I described this nerve sensation immediately post-op to the surgeon and he said "I don't know anything about that." blasé, as if he'd never heard of it and it was just post-surgical pain. I came to understand he fully would have known about this--but did not want to admit his as it is a glaring call of malpractice. Before I explain some of my symptoms/life, I first want to say thank you so much for this blog! I ironically worked at UCLA as a counselor and facilitated support groups for people and caregivers living with extraordinary health issues--who would think that I would have one surgery and never go back to work from it, and be here on the other side? I am new to this page so forgive me if this is fully answered here, but has anyone PERSONALLY been helped by laser, and does anyone know of anyone doing this near Los Angeles? Also, I was given a tens unit to try by my physical therapist, who really meant well--but it was absolute torture. The concept makes some sense as I had worked in neurology where surgical VNS (vagal nerve stimulation) was used fairly effectively for seizures. But I have spoken with neurologists I have worked with and this is really quite different. I personally found that the Tens unit made the pain worse, it is a very similar sensation (being shocked--we all feel this already)..my pain specialist and primary doctors also told me the tens is a bad idea for the face, is not designed or approved for this--and all felt it was a very bad idea. I feel as if I’m being forced to chew on a pin cushion for the rest of my life (and I have scores of permanent facial muscles damage along with it, but as you note I look fully normal and no one understands how debilitating this is. I have tried every medication under the sun. Absolutely NONE of the nerve-damage meds did a thing--I mean they did not make even the slightest difference in the pain. I now am mostly relying on Nucynta (a newer 1st generation drug, supposed to be somewhat better than Tramadol) and Clonazepam (as you have also noted works for you.) I also had tried Percocet, which helped but I hated taking opioids and finally bit the bullet and stopped it. It did help but the side-effects (long and short term) were too intense. So, again, it's been 4 years last October and the intensity of the lingual nerve damage has not changed at all since I woke from anesthesia that horrible day. In the moment, I mostly want to THANK YOU for creating this blog. I need to take some time and read through it, but I am desperate to find relief and treatment—and all of the MD’s I have seen feel that for me this is permanent—I refuse to believe this and will go to the moon if someone truly has a cure. So, I hope I can learn more about the efficacy of laser—please let me know. Glad to have found you.

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    1. I am so very sorry that you are part of our "elite group." I definitely understand, however, and agree that knowing that there are other people who understand is helpful. Because we all look fine, most people forget...think we must be better, etc. I have given up on looking for a cure. I am over the six-year point, and I have to work on forgiving the dentist who did this to me and lied about what happened. I am trying to find some "peace" with the pain as one other person posted above is also doing. At this point in time, the pain is embedded in the brain, so I am not sure that any medication or other treatment could even help. I am doing magnesium oil spray as my mother gave it to me and I have to try:) I am only taking a small dose of oxcarbmazepin each day, and no longer am taking the anti-depressant for pain or the clonazepam. The side effects were just too significant. I tried to get off the ocarb and there were significant issues, so will attempt again at some point. I do encourage people to keep trying to find relief, but through healthier methods. It's not right that we suffer with lnd, and then have issues with meds the spiral things downward. There is a LOT of malpractice out there, but the system is very supportive of the practitioners, not the patients. Again, as long as we look normal, no one will believe that we are really damaged. It's a croc, but it's very real. I wish you the best and I pray that you find healing. And, that you can find a way back to working in a position that you enjoy. We give up too much due to the mistakes of others. We have to fight hard to get our lives back. Thanks for your post. Please continue to provide updates.

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  31. Hello everyone,

    I guess I am here to join your club, sadly.
    Two months ago I was having a dental bridge fitted on my lower left side, and since my gums were so sore, the dentist gave me a local anesthesia injection. I jumped in my seat from the electric shock I felt shooting through my tongue. I couldn't hold back my tears. She just carried on like it was nothing and I thought nothing of it - until the numbness did not go away after a few days. I called her and let her know what was happening, she said the pressure of the liquid going in must have bruised my nerve, to take vitamin B and I would be fine. But here I am, two months later and I'm not fine.

    However, after reading some of the posts here, I guess I was lucky after all, it could have been much worse. I don't feel any pain, rather it's a burning sensation along the left side on my tongue, which is always present to some degree. Some days the burning is so intense that I get a full blown anxiety attack. Other days it's not as bad, but super annoying and very distracting. But that one spot near the tip of my tongue where I felt the 'electric shock' - there is a constant feeling of having a needle stuck in there. I keep trying to remove this imaginary thorn with my teeth.

    I didn't go back to the dentist and I don't intend to. She will not be able to help me and I can't sue her because I can't prove it. I was supposed to pay for the bridge afterwards, but luckily I never did. At least that.

    So... as with most of you, the burning is worst in the evening, and almost completely gone when I wake up. How is that possible? Chewing gum is my only relief. Why is that I wonder? I have dry mouth and a metallic taste. But I don't feel it when I eat... I have been eating so much lately, meals and snacks and more snacks... just to get a break from the burning. I can see the weight starting to pile on. Pain medication doesn't help, although I haven't tried large doses. I haven't tried any other medication except for a course of vitamin B supplements, and judging from all these posts, nothing will help anyway.

    I guess all I can do now is be patient and hope for a full recovery. The bridge is out of the question now, I will probably only get crowns on the teeth that have been filed down. I have found a local dentist who uses a different type a new kind of anesthesia called STA, or 'Single Tooth Anesthesia' which minimizes the risk of LNI. I'm planning to schedule a consultation with him. No more opening wide for me.

    I plan to continue my research and try out a few things, laser therapy, acupuncture and oil pulling. Hopefully one of those will provide some relief. And I am determined to preserve the teeth I have left for as long as possible! I now brush and floss after every meal. The price of not doing so is just too great.

    Good luck everyone and stay strong!

    Renata

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  32. Hi All,

    Two months ago I had a Laragoscopy due to having a hoarse voice for 3 months. The surgeon had problems inserting the scope which I understand isn't unusual at the time I was under a general anaesthetic. After the procedure my mouth was very bruised on the right side and I had a circular injury on the right side of my tongue.

    After an initial healing period of 10 days or so I am left with constant burning on the right side of my tongue, a metallic taste in my mouth and pretty much no taste sensation. I can get salty but that's about all.

    The surgeon said the nerve has been bruised and should go back to normal within 3 months but I am now almost 2 months post procedure and the burning has got worse and my lack of taste is still the same.

    The thought of this being permanent is very scary, I am back to see the surgeon in January.

    Thank you for all the info in your blogs, I will keep reading x

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  33. Hello all,

    I am back with an update. It has been 6 months and thankfully, the burning sensation in my tongue is gone. Either enough time has passed, or the laser therapy I tried back in October really helped me.

    In October I started going to a physiotherapist for my back muscle pain. She gave me some exercises and asked if I wanted to include ultrasound and laser therapy, and I agreed. Of course I told her about my problem and asked if she knew anything about it, and if the laser could help. She said she had never treated such an injury before, but confirmed that lasers are very beneficial in treating injured nerves.

    So what she did was put the applicator (wand) against the back of my jaw, just below my ear and turned on the machine... I felt immediate relief! The burning came back later that day and it was intense, but I did feel relief back at her office. So I continued with the treatments and had 5 done in total. Every time I would feel relief during the treatment and the burning returned soon after. But then my condition started improving. Was it because of the laser or was it just that enough time had passed... I can't be sure.

    But I think it is worth a try, you have nothing to lose.
    Good luck everyone and stay strong!

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  34. Hello All. I've received some private messages, from other contributors, asking about my pain and recovery so I thought I'd update everyone. As I posted before, I saw a neurologist at Duke University Hospital who specializes in facial pain, just over a year ago. Since then, I have seen him about three times. I am now at 2mg of naltrexone that I take daily. He also suggested I go on probiotics to help with general system inflammation. My pain has reduced by 80-95% depending on WHAT I EAT. This is so strange but if I ingest something that causes me digestive distress (gluten, alcohol, spicy foods), my mouth will also hurt. If I eat 'clean' I will have no pain at all - just a low-level burn at the back of my tongue. I cannot believe I am nearly pain-free after all these years, dollars and numerous attempts to solve this problem. "Grateful" doesn't begin to describe it. Unfortunately, this sort of pain is very difficult to diagnosis and treat and one size does not fit all. But if anyone can get relief from low-dose naltrexone, it's side-effect-free and inexpensive. Certainly worth a try.

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    1. Susannah,here's where I'm confused; when I look up Naltrexone: Naltrexone blocks the effects of opioid medication, is is designed to manage opioid or alcohol dependence.
      Well, for me, opioid medication is the only thing that HELPS with my nerve pain, so the last thing I want to do is block its effectiveness... Can you help explain more about this med, how it is used, and what you do for breakthrough pain? (Note that I already take probiotics and avoid alcohol, spicy foods)
      Also, could you share your Doctor's info, so it might help others in the NC area? Many thanks! jf

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    2. Hi Jane. I have no idea why it works for me - only that it does. I've done some google searches for 'low dose naltrexone' and there is plenty out there. Perhaps my pain is connected to inflammation - it certainly seems to be. I have never taken opioids for it. I tried gabapentin for a couple of years and it helped but I began to have memory issues which impinged on my work so I stopped taking all medications and used mint toothpicks to cool my mouth. Truly, my pain has always felt like inflammation and not the searing, sharp bolt that I have heard trigeminal neuralgia sufferers describe. Here is a link to my neurologist. As I wrote in an earlier post, it took six months for me see him but it was worth it. https://www.dukehealth.org/find-doctors-physicians/wolfgang-b-liedtke-md-phd

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    3. Susannah, thanks for your update. Wow, how amazing it is that you've found such relief. I am going to contact my Dr. and request a trial of Naltrexone. I am at the eight-year mark, and nothing much works. My mind is all that I really have and it just gets down at times. Jane, please do not think that I am intruding or that I know something...just worried about the use of opiates for nerve pain as they are not supposed to work well or for long. Just be very careful and continue to search for something else (I get it, what??). Such a frustrating injury to "live" with.

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