Monday, March 4, 2013

Um, I'd like to get off the ride now, please....

I so wanted to report that I was nearing recovery. I really did feel better for awhile. But, I always say it's a roller coaster and, after a particularly stressful month, including a business trip, a child's injury, financial strain, and such (you know, LIFE) I seem to have taken a big step back.

Combine that with a change in the weather; a big temperature and air pressure drop, which always makes things with nerve endings worse (as anyone with herniated discs or LND knows), and well, I'm hurting more and needing more to take the edge off after weaning myself down to less medication in January. Everything is amped up again. It continues to be a roller coaster .

So, I'm trying to remember to
  1. Relax
  2. Breathe deeply. Slowly. In.......out......
  3. Remember, things could always be worse.
  4. Don't tense your jaw, your neck, your shoulders.
  5. Sit ergonomically if possible.
  6. Get lots of sleep

I wish I had a magic wand and could say I'm cured, and I can cure you too! I can't, but I won't give up trying.

Lately I'm looking into a few order of invasiveness and fear factor:
  • RF procedure (radio frequency). Scary if you don't have the right practitioner.
  • Nerve blocks
  • "soft" laser
Anyone tried any of these things with success? My Dr wrote me a scrip for Botox injection to the face, but I'm afraid I'll end up paralyzed or something. Like I said, things can always be worse.

What's new in your world?


  1. Hi there jane,

    I literally have been researching lnd for years and have never come across your blog... I cannot understand it!!!
    I believe I am the guinea pig of LND and am waiting on a date to have cutting edge DBS (deep brain stimulation) surgery in the UK v v soon.
    I live in ireland, i am 29, mother of 3... I am in 8/10 pain 24/7, tonuge numbe, no taste and agony since 2008.
    My speech is affected when the pain is at high intensity... i'm on morphine 24/7
    Love to keep in touch

  2. Welcome Tina, so glad you found me :) I am a single mom of 2 and can relate - you have to be there for the kids, right, so you can't just wallow in pain all the time. I get it.

    Does morphine help? Make you sleepy?

    I looked up DBS and see it's most often used for Parkinson's patients, but also has worked with varying results for chronic pain, depression, and Tourrette's.

    I only know what I read on the Wiki page, but potential side effects are a little concerning so please be careful. Did a neurologist suggest this procedure for you? I'm curious because I've never heard of it. Then again, the rest of the world is way ahead of the US when it comes to medicine.

    1. Hi Jane,

      Yes I have been re4ferred by both an oral pain specialist and a chronic pain specialist in Ireland, I going to Oxford in the UK to have this done.
      The morphine patches only slightly help- and yes I am sleepy. I have tried a concoction of meds and none even slightly dulled the pain except morphine- but my liver will suffer as result!!!

  3. Hi Jane,

    I stumbled across your blog while trying to do some research on my situation, and I feel so blessed to have found it now. I'm still in the process of reading all of your posts so for now I'll just introduce myself.

    I'm 26, and after much anxiety finally gave in to having "routine" wisdom teeth extraction for all 4 wisdom teeth just 2 weeks ago (Feb 25, 2013). My family dentist has been doing wisdom teeth for 45+ years and thought he could handle it no problem (he did my mom's and my brother's with no issue). After about 5 hours, he had only managed to get out 2.5 of my wisdom teeth. The two on the bottom were being very difficult - the left side was chipped away at "like concrete" until he finally got it all, and the right side had such a deep root that he could only get half of it. I was moved to an oral surgeon at that point (only halfway pulled out of anesthesia) where the oral surgeon finished the 1.5 teeth left. The whole procedure took 10hrs.

    After 48hrs, I started to get really concerned that my entire tongue was still completely numb. On the 3rd day, I had a checkup with my dentist. I told him my tongue was numb and tingly/burning/painful. He LAUGHED in my face and said, "Oh yeah that could take MONTHS to heal!! Hahahah" He only suggested taking Vitamin C as a way to speed it up, and said I didn't need to check in with my oral surgeon at all. I decided to go anyway to my oral surgeon on day 6 (who I didn't remember meeting), and he was immediately concerned about my tongue. My entire tongue is numb, therefore BOTH sides of my lingual nerve were damaged. I don't know to what extent, but I have weekly appointments with my oral surgeon now so that he can track my progress. He prescribed me a steroid pack, and said he would be calling the head oral neurosurgeon at the Houston Medical Center to get his thoughts. I may also be getting a prescription for some kind of seizure medicine that he said helps promote nerve growth, though I don't remember the name right now. If there is no progress within 1 month, he said we will start looking into the nerve repair surgery as we don't want to miss our 3-month window of opportunity. I'm wary of another oral surgery, but at the same time desperate to get potential relief.

    It's extremely depressing, painful, annoying, frustrating, etc as you very well know. I can't imagine living my life like this but from reading your blog, I know it's possible. It does help to have a community of people that can relate because I know no one that understands first hand what I'm feeling. To them, my tongue looks normal and I'm "lucky" that I'm losing weight (because everything tastes like cardboard!) I would love to join your Facebook group if possible - I put in a request to join. I'm now inspired to start keeping track of my daily status/progress. Hopefully this will help my doctors to treat me and give myself encouragement by seeing progress, if any. Thanks for creating this blog for the benefit of all of us!

    Natalie, TX

  4. Natalie,
    Thanks for sharing your story - you are very lucky to have that oral surgeon take charge of your injury so quickly!

    The steriod pack was the right thing to do; if I'd had that, I might not still be hurting 4 years later. Instead, I got sent to an allergist (rolls eyes). We really need to change the dental malpractice laws in this country.

    It is amazing to me that dentists are so blase about this and allowed to injure people for life. Hopefully, that isn't the case for you, since you have someone managing it closely right from the start.

  5. By the way, after reading Natalie's story (and so many others) I am terrified of letting my 20-yr old daughter get her wisdom teeth out now. We've put it off for 2 years.

  6. Hi Jane,

    I had a root canal done 4 years ago! I had thought for 3 years that it was the root canal that was the cause. But, I went done to OHSU and they told me that it was the drug ARTICAINE that caused the damage. I have burning of the tongue and in severe pain 24/7!

    Did you have any tests that proved that there was damage to your Lingual Nerve or Tongue if so what was it called? Still looking for the magic cure!
    Thanks so much for starting this Blog and letting people know that there not alone!!!

    1. Hi Cathy,
      I'm so sorry for your pain. My husband's injury was by Articaine too, and has been very difficult to treat. On Lyrica now, but it's not helping much.
      I am really curious if you were injured in the same office as my husband. If you're interested in discussing directly, let me know... although we can't sue them, they can probably sue us! (ARGH)

  7. In my case it was Carbocaine; I've also heard of Septocaine. I don't have any conclusive proof that it is the drug vs. the positioning of the needle. If someone can prove it's the drugs we have a huge class action suit against the manufacturers.

    For me, I went to numerous doctors who were useless; finally I found a teaching hospital that had an orofacial department specialist in Florida; they did all kinds of funky tests on me and declared it to conclusively be lingual nerve damage. However, I was told there is no cure. You can just hope it goes away in time. They did try low level laser light therapy, however none of this seemed to help much, or was covered by insurance, and was an hour from my home, so I had to stop going there.

    Thereafter, due to the pain, stress and tightening my jaw all the time (especially when sleeping) I've also developed continuous facial pain in my upper teeth (though my injury was behind the lower left molars). to this day I cannot touch or sleep on the left side of my face.

    I hope this info helps!

  8. Jane, I would love too talk with you! Is there a number I could reach you at? Or a email. I have tried on here to find one with no luck. Also tried facebook to find you but no luck there either. I am on face book my name is Cathy LeCaire profile pic is of a cat looking at the computer with white tank top in the back! Thanks so much for the info! that helps

  9. Jane,

    Thank you for your post. I wanted to let you know that I have found myself in a very similar situation. Around early March, I felt as though my nerve injury was improving overall, and found that even on the worst of my "bad days," I was now able to forge ahead, and not have to stop and rest or take a nap, as I used to. However, I too had a particularly stressful month, all due to work, and I also feel like I've taken a huge step back. However, I realize that there is no choice but to press on. There will be more good days ahead.

    In addition to the items on your list of things that help us cope with this injury, I also find that trying to: 1) exercise regularly; and 2) stay adequately hydrated; seem to help me. I have not done a good job of either lately, but as some of my work stress subsides, I am going to try to get back to those habits that have helped me make it this far.

    I hope you are feeling better.


    1. Hi Erik,

      Thanks for are right, exercise and hydration are so important. I drink water 24x7 (have to, or the mouth burning worsens), but I've totally fallen off the exercise wagon. Unless I can cheat and count the numerous hours spent packing and unpacking from a recent move as "aerobic exercise"!

      How long ago were you injured? I've probably healed around 70% since the beginning, Dec, 2009. I've always tried to stay positive and think this will eventually heal completely, or they'll find a cure, but realistically I'm trying to deal with possibly living with it as a part of life, in case it never ends. Kind of like being single - that's probably forever too - ha! But there's always that smidgen of hope to cling to ;)

      I'm glad your work stress has been reduced. The most frustrating things are those we cannot control.

    2. Jane,

      I was injured by an anesthetic injection in August 2004, so it has been over 8 1/2 years. I probably had 95% of my feeling back after the first year, but the tingling and other irritating sensations have persisted since that time.


  10. My name is Jana and I had my wisdom teeth extracted in November 2012. It is now April and I have been diagnosed with severe parathesia and have been told by a specialist I will never have feeling/taste back unless I do a surgery to re-connect my nerve. I was told that I would have the potential of getting 50% of my feeling back and for the cost of the surgery 10k I decided it was not worth it. However a few weeks ago one half of my nerve started protruding out of my gum line where my tooth was extracted. First of all we thought maybe it was a bone fragment that had surfaced however when I went in to my local dentist he confirmed it is the nerve erupting. When it is touched severe paint shoots down the right side of my tongue and the tip of my tongue feels like it is being drawn to the rear of my mouth.

    I am working with an attorney who specializes in dental Mal-practice and is willing to take my case after the surgery is completed. Has anyone gone through the nerve re-connection surgery? Was it successful? Has anyone gone through a law suit after this injury and won?

    There are so many unknowns and no one...except for those on this site that seem to understand. I appreciate all that is shared here.

  11. Jana, I hope your case is successful - please keep us posted! More importantly, I hope you find relief. I have never heard about the nerve actually protruding. I would imagine surgery is the only option. Make sure you get a second opinion. Are you in in the the States? I spoke with attorneys in several areas of FL but none wouldn't take my case. One in CA said they might if it had happened in CA.

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