tag:blogger.com,1999:blog-52671268026007586972010-05-01T21:30:08.558-04:00Lingual Nerve Injury - Burning Tongue, Aching Teeth & all sorts of funFor those suffering lingual nerve injury, and the people who love them. Some people recover within days, some weeks, some months, some years, some never. All deserve our compassion and concern.
Since Burning Mouth Syndrome shares some of the same tortuous effects, though it is a different condition, I will often make reference to BMS as well.Janehttp://www.blogger.com/profile/07759804883488167297noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-5267126802600758697.post-89531165004975547042010-04-27T10:50:00.001-04:002010-05-01T21:01:32.224-04:00Charting your progressOne of the best ideas I ever came across was keeping a pain chart to track your recovery. The reason this is so helpful is because it is VERY easy, during a flare-up of pain, to think "this will never go away!", or "I'm getting worse, not better!", and to overlook the fact that, as bad as the pain is now, it used to be worse. Your definition of "the worst it's ever been" may change over time. <br /><br />I won't candy-coat it: there are going to be bad flare-ups, or pain spikes as I call them... but over time, the peaks will very gradually be lower. I don't know if they ever go away completely. I'll let you know when and if it happens for me.<br /><br />Anyway, I developed a very simplistic graph, an X,Y axis, with 0-10 (indicating pain level) going up the side and the date going across below. Every day I indicate the pain level I am experiencing. You'd be surprised how something so silly can really help. When I am having a bad day now, I look back and realize how much better "bad" is than it used to be, and it gives me hope that this trend will continue. Though, as I've said before, this recovery is not a linear thing...there are many ups and downs, one step forward two step back weeks, and days you'll wonder if it will ever get better. It will.<br /><br />It's also useful to note what may have prompted the pain result each day, especially if it's a particularly good - or bad- day.... Loud? lots of talking? Stressful day? Rainy? Cold? Windy? New medication? Forgot medication? Etc... Over time, you should be trending downward, and your spikes shouldn't be as high. If you try all the vitamins, meds, and alternative therapies I have recommended without any improvement, you need to see a specialist, ASAP. The longer you wait, the worse it is, because your brain learns to live with this neuropathy, and comes to think of the pain as normal, instead of no pain being "normal".<br /><br />Meanwhile, get yourself some Oragel, some gum, and whatever else works for you, to help you cope during the tough times. You will get through this. Hang in there.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/5267126802600758697-8953116500497554704?l=burningtongueandteeth.blogspot.com' alt='' /></div>Janehttp://www.blogger.com/profile/07759804883488167297noreply@blogger.com0tag:blogger.com,1999:blog-5267126802600758697.post-74909228747336495482010-04-27T10:12:00.005-04:002010-04-27T10:44:03.105-04:00Slow Progress is still progress, nonetheless...right?In order to give encouragement to others, I wanted to report that I've had a few "good" days in a row. Good is a relative term, when you haven't felt normal for a single day in over 4 months, though I wake each morning hoping I'll be back to my old self. (Of course, I also wake each day hoping I'll win the lottery, and that hasn't happened, either!) But things could be worse - people in Haiti woke to found buildings on top of them; people in Mississippi had tornadoes destroy everything they own; people in the middle east get blown up by car bombs; people with cancer are struggling just to keep on living. Things could always be worse. This is vital to keep in mind when I start feeling sorry for myself.<br /><br />Saturday was not a good day; I was on a date, so I had to pretend to be "normal" all day long. The date was fine, I managed to find something I could eat that wouldn't sting my tongue and be subtle about it, and slip some berry-flavored gum afterwards, which helps the burning - I was able to not seem like a total whack job...but by that evening, I was in pain. I had plans to attend a quiet dinner party with friends (she promised it would be quiet, because she knows how painful it is for me to deal with any noise at all). I had to bail out at the last minute, as I so often have to do, which I hate. <br /><br />A lot of times with this injury, I find you have to really pick and choose what is worth the effort and what is not. <br />>Being able to feel good enough that I can play with my kids and act reasonably cheerful - high priority. Going to a party where I only know 2 people - low priority. <br />>Finding work that pays well and will allow me to still go to Dr. appts- high priority. <br />Finding work that is high stress, long commute, which results in more pain, plus has low pay and keeps me from the kids- low priority. <br />>Going to a rock concert, formerly one of my favorite things to do - not even an option any longer. <br />And so it goes.<br /><br />So, on Saturday, I fell asleep for a nap, and when I woke, my pain meds had worn off, and "hello, agony, my old friend" - I had that horrible feeling of my teeth being held in an industrial-strength vice grip, to the point I just couldn't imagine trying to smile and be pleasant for even 10 minutes with a bunch of strangers.<br /><br />Napping is something I have never been able to easily do in my 46 years on this planet. But now? I'm down for the count instantly - sitting up - no problem. At a movie - guaranteed. Watching TV in a room full of people - yep, that too. Not sure why this injury is so exhausting, but it may be the effort I expend trying to hide it, or overcome it, that is really what's taxing. I also don't sleep well, as I am trying all night to avoid turning on my left side, which is my natural way to sleep.<br /><br />I haven't been on vacation in forever...even if I could afford it (after a job layoff and over $10k in medical bills thus far) I don't feel up to it. I'm being pressured to go to Chicago next month and just can't wrap my brain around it. The thought of the stress and discomfort of a plane flight, in my unpredictable condition (will my head/ear/teeth feel like they're going to burst with that air pressure? I have enough trouble already on days the barometer drops when a weather front is approaching!) <br /><br />Everything in my life revolves around the injury, the pain, and my ability to control it and stay on task. But I hold out hope that I'll feel better then. There's always hope. There has to be.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/5267126802600758697-7490922874733649548?l=burningtongueandteeth.blogspot.com' alt='' /></div>Janehttp://www.blogger.com/profile/07759804883488167297noreply@blogger.com1tag:blogger.com,1999:blog-5267126802600758697.post-82911382272563904212010-04-25T08:12:00.009-04:002010-05-01T20:41:21.968-04:00Coping with the Pain - Meds and TreatmentsDisclaimer - I am not a medical professional, just sharing personal experience and other info picked up along the way.
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<br />Everyone I have spoken with agrees that the pain is least upon waking in the morning. The key here, is the nerves being completely at rest. Therefore the goal for pain relief is to be as calm, or as I call it, as "zen" as possible - to the extent that is possible in our modern lives! If only I could sleep all day every day, I'd feel very little pain....but that is not possible.
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<br />If your nerve branch is injured, you may find the pain moves around. My doctor compared nerve healing to a squirrel jumping from branch to branch of a tree - when the squirrel jumps, all the branches shake (all the nerves are affected), therefore, you feel pain in sometimes odd places you wouldn't expect. Like the teeth, or the cheek, throat, or ear. So, sometimes you need to take a systemic, or global, approach to pain management.
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<br />I have had pains in all of these areas, it varies by the day, or sometimes even sometimes by the hour. Some days my throat burns (only on the left side) especially if I am straining to talk, such as in a restaurant. Typically in my case, it's the teeth, tongue and cheek. For awhile the headaches were truly debilitating, but those have lessened. Now, the teeth on the left side of my mouth feel like they are in an ice bath - that's the only way I can think of to describe it - doesn't that sound delightful? Oh, it is, trust me. Teeth in a vice-grip is a feeling I've also heard people complain about - yeah, it's kind of like that.
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<br /><span style="font-weight:bold;">Steroids</span> - if you have just been injured, a course of steriods such as Prednisone is typically recommended, but unless used within the first 2-3 weeks of injury, you are S.O.L. I was not diagnosed in time (my dentist blew me off, telling me I just had "sensitive teeth"), so that window is now closed for me. I didn't figure out (on my own) what I had until 10 weeks post injury. I was tested for everything under the sun by numerous doctors, but no one ever suggested injury from dental injection, though I kept saying "but this all started with a dental visit".</span>
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<br /><span style="font-weight:bold;">Clonazepan</span> - For the fastest relief of acute burning tongue, the best thing is usually clonazepan (Klonopin). This is a small yellow tablet - you allow to dissolve on the area of burning in the mouth. Then, either you spit it out or swallow it, depending on your Drs orders. It may make you sleepy, so I take 1/2 tablet at a time, scattered several hours apart throughout the day so I can function. <span style="font-weight:bold;">Recommended</span>.
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<br />At this point in my recovery, I am using 1/2 tab around 2-4x/day. But, as you will see, the nature of recovery is not a linear thing - you will have a few good days then pain spikes for some reason. Stress is a big factor, but not the only one. On the days I have "flare-ups", I up the dosage of meds. But then I am in a fog and need a nap! On a really good day I may only take it once or twice.
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<br /><span style="font-weight:bold;">Other topical remedies</span> - Oragel, or topical lidocaine or benzocaine. Tastes nasty, but gives immediate relief. The blessed numbness is fleeting but allows you to at least speak for an important meeting or be able to play with your kids, not to mention keep you from blowing your brains out when you don't think you can take the pain any longer. Zero side effects. I carry it in my purse always, and wish someone had told me about this months ago. <span style="font-weight:bold;">Recommended</span>.
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<br /><span style="font-weight:bold;">Anti-inflammatories</span>. Because the nerves of the mouth are inflamed, you will continue having pain until they "settle". Naproxen is often prescribed. For me, this wasn't an option as it made me sick to my stomach. However, I have now been taking Mobic with virtually no side effects. In fact, I wish I could take more, but am being conservative and sticking to one 15mg pill per day. They are small and easy to swallow, taken with food, you should have no problem. But always let your Dr. know if you start a new med and notice reactions.
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<br /><span style="font-weight:bold;">Anti-depressants</span> or benzoazipenes - again, to calm the nerves. These may in fact help, but in my case, I have found the side effects to be too great. I have been prescribed Nortriptilene, Lyrica, Zoloft and more...even if my stomach could tolerate it, I literally can't think straight, and there are withdrawal consequences. Some people even feel suicidal on some of these drugs, so please read all the warnings.
<br />The longest I lasted on any was Lyrica for 3 days; I will say it does help with the pain, as well as lift your mood, but I was, like, totally "baked" - stoned out of my mind - I couldn't drive or work under those conditions!
<br />Gababentin (Neurontin, etc.) is used for nerve disorders such as trigeminal neuralgia and but again, you must consider a long list of side effects. <span style="font-weight:bold;">Use caution.</span>
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<br /><span style="font-weight:bold;">Vitamins, Homeopathic, and Alternative therapies:
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<br />B vitamins are thought to help with nerve healing
<br />C is always good for everything
<br />A-lipoic acid is thought to help with burning
<br />Acetyl L-Carnitine - another good one for nerves
<br />Hypericum, a.k.a. St John's Wort - for nerve pain, also helps lighten your mood. Taken sublingually. Available at Whole Foods or Vitamin Shoppe, I took for about 3 weeks and it seemed mildly helpful, but not enough to continue when I'm already taking a boatload of other stuff.
<br />Arnica - sublingually (dissolved under tongue) for general healing of any sort. I didn't really think this helped much and the little pellets just annoy my tongue when it is already hurting.
<br />Traumeel - also to calm the nerves though typically used for joint pain for most people. I just started this one, 10 drops 3x/day.
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<br />I use Bee M.D. honey drops and Halls Breezes moisture drops to help with dry mouth and stinging, in an attempt to hold off longer between doses of Klonopin. Chewing gum helps, too, even if you just let it rest in your mouth, because chewing often hurts- pina colada and berry flavor seem to help most for me. <span style="font-weight:bold;">Stock up on this stuff.</span>
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<br />But wait, there's more! I have undergone cold laser and light therapy, taken tons of B vitamins, alpha lipoic acid, L-carnitine, and 7 sessions of acupuncture. Prior to this, I had never tried acupuncture; I will say that, though it's a funky kind of procedure, for some reason having needles stuck in you does allow you to relax for awhile, and did help with my headaches. Unfortunately, the results are not long-lasting. But it'll get you through those really tough days.
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<br />Exercise is recommended if you can tolerate it, but I must admit, I've spent many, many days barely able to get out of bed. I used to walk 1 mile every day pre-injury; I remember trying to walk about 2 months ago and not even making it past 3 houses on my street, I had to turn around and come home. Now I can make it about 3/4 mile on a good day. Running, or anything aerobic is not possible; the jostling of my head up and down is too painful. Even things that should be so easy, can hurt, when I lower my face down for yoga or pushups, the blood runs to my head and owwww! But blood flow is an important component of any recovery. If you can't exercise, try simple stretching, just make it so you head is lowered no further than your waist.
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<br /><span style="font-weight:bold;">Alcohol/Liquor</span> - I have mixed feelings about this one. Many people say a beer or glass of wine helps them relax, therefore relaxing the nerves...but alcohol gives a burning sensation, and everything is stinging already, so not sure if the trade-off is worth it. Though who wouldn't love an excuse to just drink all day ;-)
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<br /><span style="font-weight:bold;">Narcotics</span> - not a long term solution, and not recommended for anyone with family history of addiction problems. I often have to take a small dose of Vicodin, as there is nothing else that really works for the pain in the teeth. I actually break the smallest dose in half (.5 mg) again, so I can stay awake.
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<br /><span style="font-weight:bold;">Stopping the meds
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<br />Just not possible for me yet. To this day I am in pain every day, on a 1-10 scale, 1 being barely noticeable and 10 being excruciating/can't think of anything but stopping the pain, most days now are around a 6, as opposed to the 9s originally. But there are flare-ups about every 4 or 5 days in the 8-range, even after all this time.
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<br />My face aches, my teeth hurt, my tongue burns, I'm still very disturbed by any noise and cannot hold a phone to my left ear. I can't rest my chin on my hand. I avoid talking, singing, and going to restaurants or parties, loud TVs, children, video games, dancing, etc... I recently bought ear plugs but found they really weren't much help. Sleep is an issue of course. Every time the weather changes, things worsen. It is a chronic, ongoing situation, but it IS improving, just at a snail's pace.
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<br /><span style="font-weight:bold;">Surgery</span> - For some people, there is actually something pressing on the nerve, or scar tissue from another procedure, that is causing the disturbance. If the nerve is actually severed, and you're completely numb, this may warrant surgery. If you do opt to have surgery, it is said that best results occur if this is scheduled within the first 6 months after injury. However, keep in mind that surgery is serious business, and can cause other problems. In my case, I was told it could actually make things worse, (though I don't know how it could be worse) and was not recommended.
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<br />BTW, I am prone to sharing my own, very unscientific hypothoses, as there is very little research and most doctors and dentists look at me like I'm nuts when I mention "lingual nerve injury". But ask anyone who has it, it is quite real, and quite painful. Thanks to people recanting their painful stories online, that is the only thing that has helped explain what I'm going through, and saved my sanity many times. Please feel free to add your own comments, questions, and theories. Disclaimer: I am not a medical professional, this information is from personal experience, and gathered from other sites.
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<br />If you have found something that works for you, PLEASE share it here....no comment is too silly or unimportant. You never know when you may be really helping someone.
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<br />Helpful links
<br />http://www.everydayhealth.com/forums/dental-health/topic/burning-mouth-syndrome?page=23
<br />http://health.groups.yahoo.com/group/burningmouthsyndrome/message/49
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<br />Will provide more in future posts<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/5267126802600758697-8291138227256390421?l=burningtongueandteeth.blogspot.com' alt='' /></div>Janehttp://www.blogger.com/profile/07759804883488167297noreply@blogger.com0tag:blogger.com,1999:blog-5267126802600758697.post-40025160534262585582010-04-24T20:49:00.005-04:002010-05-01T21:30:08.574-04:00How a simple dentist appointment can change your lifeOn Dec 30, 2009 I went for a routine dental visit to have two fillings done. I left with a puzzling injury I'd never heard of, which would end up causing me months of severe pain all over my face, tongue, mouth, and throat, in addition to migraine headaches and earaches, cost me over $10k in medical bills, and caused me to lose my job. It's completely obliterated my social life and changed an active, happy, healthy single mom into a chronic pain sufferer who needs to be medicated to get through every day.
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<br />I didn't KNOW I had a lingual nerve injury for a long time - no one ever told me. I just knew my mouth burnt like heck, to the point where even t<span style="font-weight:bold;">alking was excruciating</span>, and I was <span style="font-weight:bold;">unquenchably thirsty</span>, starting the day after a routine dental visit. Ten weeks later, after my dentist had twice blown me off saying I just had "sensitive teeth" or "allergies", and 5 doctors failed to diagnose me, including neurologists at the Cleveland Clinic, I finally figured it out on my own, through numerous hours spent online researching my symptoms and learning more than I ever want to know about dental anatomy. I have no medical background whatsoever, I just cared more than they did.
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<br />My Lingual Nerve injury was caused by a "needle stick" - <span style="font-weight:bold;">the dentist hit a nerve</span> during a simple anesthesia injection. I do remember just about jumping out of the chair when I felt that injection and signaling to him that I was in pain (which he ignored). Starting the next day, New Year's, I just knew my tongue was on fire, and I couldn't drink enough water, no matter how much. Then the migraines and teeth throbbing started, and it all went downhill from there. I began a round robin of visits to doctors all over town trying to figure out what was wrong with me. No one ever did. After much internet research, I diagnosed myself with lingual nerve injury, which was later confirmed by the head of the orofacial pain clinic at a nearby University. <div>
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<br /></div><div>Burning Mouth Syndrome has some similarities though it's different, but in fact, my dentist misdiagnosed me with BMS (even though I said, isn't odd it would start THE DAY after my dental visit? And only hurt on ONE SIDE?) and my guess is some of you have lingual or alveolar nerve injury, not BMS, and don't even realize it. Think about when your symptoms started (after dental work?) and whether it seems worse on one side than the other.
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<br /></div><div> I'm told the odds of this injury happening are about 1 in 100; considering how many dental injections are done every day in the world, that doesn't sound so rare to me. There are many nerves running throughout our mouths that lead into the trigeminal nerve. Nerves branch out from there into most of your head, face, and of course the teeth, tongue and oral mucosa. This can cause:<div><ul><li>burning tongue
<br /><span style="font-weight:bold;"></li><li>throbbing teeth
<br /></li><li>sensitive teeth (such as to wind blowing, or to cold)
<br /></li><li>feeling like the tongue is clamped
<br /></li><li>feeling like you are chewing glass</li><li>loss of taste</li><li>chemical taste, or chewing tin foil feeling</li><li>feeling like you've been punched in the cheek 24x7
<br /></li><li>headaches
<br /></li><li>burning throat
<br /></li><li>lingering numbness from novocaine
<br /></li><li>a bruised feeling in teeth, face, or neck (but only on one side)
<br /></li><li>teeth feeling like hey are "on ice" or tightly held by a vice-grip</span>
<br /></li></ul>and more
<br /></div><div>(feel free to add your symptoms)</div><div>I've attached a link to the Wiki page that illustrates what a lingual nerve is and why a dentist would be injecting anywhere near there
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<br /><span style="font-weight:bold;">It is thought that this is seriously underreported</span>, so if you have suffered numbness or pain that lingers for weeks or more after a dental visit, please do post here. I've set it up so you can post anonymously if you so choose. Sometimes the Inferior Alveolar nerve is injured. Though some injuries happen from clumsy, imprecise injections with "novocaine" (aka lidocain, articane, septicane, carbocaine, etc...). my understanding is it may even more often happen when wisdom teeth are being extracted (on the bottom). </div><div>
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<br /></div><div>If you are feeling burning pain on your tongue and teeth, gums or oral mucosa, I am sorry for the pain that brought you here. There is already a board called Lingual Nerve Injury Forum, and also sciental.net, which are quite good in their own right, however as usually happens with these things, posts begin to drop off as the injured recovers. That leaves those of us who are still suffering dangling and looking for hope elsewhere. So I decided to start my own blog.
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<br />Since there are so few people who understand this crazy condition, I find great comfort in sharing notes and stories with others who are in the same boat, and want to keep it going. I welcome all of your posts and hope you will vigorously participate. Let's try to keep it nice here guys, we are here to support one another, goodness knows we are all dealing with enough pain already...</div><div>
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<br /></div><div> I have been dealing with this injury for 4 months now. Some people are lucky; they have temporary numbness (parasthesia) or burning pain (dysesthesia) for just a few days or weeks. But for some, the pain just continues 24x7 for months on end - some even report still not feeling normal after 2 years. Years? Seriously?! I can't imagine suffering with this that long. Already I've made it through the worst part, when I wanted to end it all rather than go through another day of this hell on earth. It is getting better, but I still never feel normal - not for one single day.
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<br />Since nerves heal exceedingly slowly (1mm per day is what I'm told) there is no telling just how long til you're better - assuming you are one of the 85% that makes a full recovery. If you see signs of recovery within the first few months, your chances of recovery are said to be better. </div><div>
<br /></div><div><span style="font-weight:bold;">You can become very depressed and anti-social with this thing,</span> since talking makes it much worse and many have even lost their jobs because of the pain, exhaustion and numerous doctor visits (me included). That's one of the things that makes a blog so critical - we may not be able to talk very well, but we can write, dammit!!</div><div>
<br /></div><div>I have much more to say, but am hoping to hear back from you. If you've already recovered, or think you may have this injury but aren't sure, please share your story- including treatments you used and how long it took - whatever you think might help someone who is still in the trenches.</div><div>
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<br />This injury can happen any time a dentist or oral surgeon doesn't take proper care. Everyone's anatomy is different, so the nerves aren't always in exactly the same place, but dentists know this, and are taught in dental school how to handle this and to react when a patient complains because something may have occurred to injure the nerve. However, in my case, my appointment was on the last day of the year, and it was a <span style="font-style:italic;">packed house</span>, with everyone trying to get their dental work done before the new insurance deductible started for 2010. The dentist rushed the procedure and accidentally injured me; but worst of all was that he ignored my complaints afterward and all my pleading for help with the pain for weeks afterward. I learned what a crazy and debilitating condition lingual nerve injury actually is. <span style="font-weight:bold;">Many other innocent and trusting dental patients have been injured - let's hear YOUR story</div></span>
<br /></div></div></div></div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/5267126802600758697-4002516053426258558?l=burningtongueandteeth.blogspot.com' alt='' /></div>Janehttp://www.blogger.com/profile/07759804883488167297noreply@blogger.com0