Botox Treatment for Facial Pain

So along the many paths you can take on the road to recovery, I've recently wandered down another one- Botox injections. No, I'm not getting a little nip/tuck. I'd heard that Botox can be used for facial pain.

THE BACKSTORY:  My orofacial pain doc recommended Botox early in 2013, but it took me over 6 months to actually go through with it.

Part of my hesitation was that he said Botox could make your cheeks look more hollow - if you have a round face or a few extra pounds, this might be a very desirable side effect! I, however, have very well defined cheekbones and lost a great deal of weight due to stress plus, now that I'm getting older, my face has thinned dramatically. You're going to hate me for this, but, I literally tried to put on a few pounds in preparation for the injections. (My apologies to those who struggle to lose weight; it's in the genes.)

Anyway, I wasn't so sure I wanted to risk changing my appearance, nor to have toxin willingly injected into my face.

So I did my usual research, consulting "Dr. Google," and some of my Facebook friends. Sandy M, in particular mentioned that she'd done very well with the Botox (Thanks, Sandy!). So just a speedy 2 months and 3 cancelled appointments later, I finally mustered the bravery to have the injections yesterday.

Just for context, I was expecting Botox to help with my facial pain - if it could eliminate the tongue tingling too, that'd be a bonus! The pain developed from me tensing/clenching my face unconsciously, as a reaction to the protracted pain of the throbbing teeth and burning tongue. This created a perfect storm of tension in my face that has made the masseter muscle hard as a rock instead of pliable. The primary purpose of the masseter is for chewing. Here's a fun image.

The "medial pterygoid" is where I have chronic pain - it feels like pressure- like someone is pressing down their knuckle very, very hard on that spot, 24x7. Pain radiates to my ear, so that I can't sleep on my left side, rest my head in my hands, or hold a telephone to that side.

When I decide to live on the edge and eat something crunchy or chewy (for that matter, any food not suitable for babies and grandmas,) I am left with even more achiness for days afterward.

Because this is all in close proximity to the lingual and thus trigeminal nerve, it's hard say which came first, the chicken or the inflamed nerve egg but, voila, I now have chronic facial pain. Did I mention how much fun this is?

THE PROCEDURE: There is no prep, no numbing creme or anything, they just go for it: stick, stick, stick, you're done. It was painful for maybe 60 seconds as the Botox went in, and for 30 minutes after I was  sore, but no pain.  (They did not inject in my forehead, unfortunately, so I look just as old as before LOL!)

The neurologist stuck me at the trigger points on cheek in front of the ear. No bleeding, no marks, very small needle.

I think the whole procedure took about a minute, if you don't count all the chit-chat that preceeded it (my doc has a fabulously charming assistant, and I have the overwhelming desire to strike up conversation with anyone to help distract me from matters at hand!)

THE COST - I had to first visit the neurologist ($50 co-pay) for evaluation. His office submitted the request to my insurance company, and after a few weeks they approved coverage. So I'm just paying a $50 co-pay for every Botox visit going forward.

THE RESULT: I'd love to say that, with the Botox, I suddenly am pain-free and look like a Supermodel...but no such luck!

But seriously, the good news is, I look exactly the same...though I realize this could change over time as it takes a few weeks to really settle in. We shall see. I will post again after the toxin has had a chance to really do its stuff.

The pain reduction was noticeable for the first 24 hours. However, I made steak stir-fry for dinner, complete with crunchy veggies. (sigh) Silly, silly girl. Now I'm hurting again.

I don't jump/wince as much when touching the left side of my face and head as I once did, though. I'd say about a 30% improvement on Day 2. From what I hear, pain may lessen more over the course of weeks and months, til the botox finally wears off, and you need the shots again. As for the tongue, hmmm...no real change at this time.

Will post again in a few weeks with an update.

4 years and 22,500 page views later

Without any advertising or promotion, this blog has attracted a sizeable audience...nearly 23,000 page views of the home page alone, and spawned 2 Facebook groups - and yet, this injury is supposedly a highly random "one in a million" occurrence.
Every day in every dental office somewhere, a patient walks in fine, and walks out with nerve damage. It's happening in the US, in the UK, and Australia, so you're not safe just because you live in a highly developed, English-speaking country.

Dentists and oral surgeons either act like this isn't that big a deal, you'll get over it, or worse, deny any culpability or feign ignorance (like my dentist - did I mention he attended NYU? Do we really believe they taught nothing about lingual and aveolar nerves there?). Some posters here report that their dentists actually think "it's a good thing" to hit the nerve. What's good about it, I'm still waiting to find out...

The dental industry seemingly runs amuck without any training on the injuries they are causing. I find that really hard to believe. However, a search of the ADA.org website (American Dental Association) for "lingual nerve" had only 9 results, none of which provide much depth in this area, and all of which were from 2010-present.

Does this indicate the problem is increasing in recent years and, if so, why? As painful as it has been for me to deal with, how excruciating would it be to watch your child go through this, and be unable to do anything to help them?

I can't do it alone, but with your help, we can take action so that this doesn't happen to our children. I'm asking everyone to help me get some attention for this cause.

I'm just a girl who started a blog, that I'm happy ended up helping lots of people. But I have no idea how to take it to the next level. If you (or someone you know) has any experience with the media, with proposing bills to Congress, advocacy, law, petition signing, non-profits, campaigning, fundraising for school, even just asking for the help you need...please inbox me at our Facebook page or respond below with your email address. You can find me on FB as Jane Fisher.

I have committed to keep this blog going to help others; if it's helped you, I'm asking for you to give back.
Thank you!
xo Jane

A must-read from the National Institutes of Health

After my own lingual nerve injury, my life has changed. As a mother, I am torn on whether to allow my children to get their wisdom teeth extracted. My daughter's dentist has been saying for 2 years now that it "must" be done...my daughter seen what I have gone through, but still feels obligated by what her Dentist has instructed her. I mean, aren't we all supposed to follow doctor's orders?
Now, read this:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1963310/

The evidence is compelling that prophylactic extraction of third molars is a significant public health hazard. It is a silent epidemic of iatrogenic injury that warrants avoidance of the extraction of any third molar in the absence of a pathologic condition or a specific problem.

...When fully formed, the roots frequently lie close to the right and left mandibular nerves, which run along the jaw beneath or between the roots. The risk of permanent paresthesia following extraction of a mesioangular impaction is as high as 6.8%, much higher than for other types of unerupted or impacted teeth. More than 95% of these teeth will never cause any problem. ...would continue to erupt into normal position in the mouth if left alone. There can be no excuse for tolerating so many unnecessary extractions on millions of unsuspecting and misled people and putting them at risk of so much iatrogenic nerve injury.

Quote: The British National Institute for Clinical Excellence is unequivocal in its recommendation, adopted by the National Health Service: “The practice of prophylactic removal of pathology-free impacted third molars should be discontinued. . . . There is no reliable evidence to support a health benefit to patients from the prophylactic removal of pathology-free impacted teeth. The conditions for which extraction is justified include nonrestorable dental caries, pulpal infection, cellulitis, recurrent pericoronitis, abscesses, cysts, and fractures.

As you know, my injury was not caused by wisdom teeth extraction, but by simple need stick during a cavity filling procedure. However, most LND is done during wisdom teeth removal. The dental industry is using procedures that put the public at risk, and no one is holding them accountable. The article even mentions that lawsuits are rarely won, because the patient supposedly "knows the risks" before work is started. I didn't know of any risk before I was injured. Did you? 

And even if you were fully informed, you take a risk doing lots of things - it's not like I signed a waiver and went bungee jumping...I was told I needed a filling done. That's it. Yet, I would lose in court if any lawyer would take my case (which they won't, I've been turned down by 6 of them).

If a patient takes all reasonable care, then trusts a medical practitioner who forces an unnecessary procedure or rushes the job, resulting in injury, someone should be responsible for permanently injuring a patient.
 
Write your lawmakers!

Feel free to cite this article in your emails and letters. (Note - citations were moved for this summary; full article, with citations, is available at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1963310/)

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 things...in 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?

Write your Lawmakers!

http://www.congress.org/

Write your congressman! Hell, write the President. Our elected officials are supposed to be here to help us. Not only do we need to be more vocal about this injury and lack of dental regulation and enforcement, but there are major issues now in dispensing pain relief - painkillers have all but been terminated in states like Florida, which has unfortunately a lot of abusers who ruin the system for real people- people in legitimate pain, who follow doctors orders, dosing precisely as they are scheduled. 

FYI, If your doctor writes you a prescription to help with your nerve pain, you may not be able to get it filled anymore. CVS, Walgreens, Wal-Mart - all are telling people the drugs are no longer available.

One example is that Endo, the maker of painkillers such as Endocet (a substitute for Percocet) has been forced to cut manufacturing due to a DEA crackdown. This means people with legitimate pain, including people with cancer, fibromyalgia, nerve damage, and a host of other long term chronic pain are unable to get what they need.

This is no small thing. Statistics have shown that suicide rates are higher in those suffering long term, chronic illness and pain. 

First it's painkillers, what's next, antidepressants? Seizure meds? Thousands of others? This is NOT how you regulate drug usage; by cutting everyone off.

Please take some time out of your day to write your congressperson, let people know your story, we need to be heard en masse - trust me, politicians and regulators are NOT coming to this website, so they have no clue what we are going through - we need to reach out and make this issue public. Everyone of us. Please feel free to link to this blog in your letters. I can also be reached as Jane Fisher on Facebook.

Thank you.

Short cut for all the nerve-injured newbies

In a hurry and want to find out quickly all of the things I've tried for pain relief and nerve repair without having to read through 4 years worth of blog entries (fascinating, though they may be)?

Anyone new to the blog, or who hasn't done so yet, may want to check out the "About Me" page, where I provide a historical overview of all the meds and treatments tried on me since my original injury in December 2009.

There is no cure for this thing; there are just things you can do to try to feel better while you slowly recover. If you are newly injured, remember chances are still very good (80%) that you will heal in short order (a couple of weeks). If you're still in pain and/or numbness after several months, your nerve may have been more severed/nicked/bruised/cut and nerve regeneration will take longer. In some cases, nerve damage is permanent. To my knowledge, no one can predict whether you will heal completely or not. You just have to try to be positive while you wait it out and see.

For me, it's become a way of life. I have seen much improvement but it's been an incredibly slow process. The first few months I wanted to die. Literally. But now, 4 years later, the pain has been reduced to the point it's just a daily thing I have to deal with, like back pain from my herniated discs. Yes, it still hurts, I still have to take meds, I still have to take time off work for doctor appointments and I'm still looking for relief that I may not have discovered yet... but compared to the first year, not nearly as bad. I hope this helps give you encouragement at the darkest times.

Many of our friends on this blog have reported that the pain is excruciating, and described as a "10 out of 10", people are scared and want to know "when will I get better?" I don't have that answer, but I'm providing a running tally of what I've tried (with mixed success) so you can see if anything works for you. If you find something that works for you, please post about it and let others know!

Warmest Regards,
Jane

Burning reduced

Well, happy new year everyone. As I reach the year 4 mark, I still have headaches, bad cheek pain, very achey teeth, etc... but for whatever reason, since getting the facial injections (that wore off after 4 days) and having the bite splint refitted so I could actually wear it, the tongue burning has subsided a bit...from a 6 down to a 3-4 most days.

I can't say why, although maybe time really does heal all things, or maybe that goofy bite guard really does help relax the muscles that affect the tongue? Also the OPD told me to take a .5 klonopin at night before sleep.

I can't say improvement is because stress has been any less; I've been under an EXTREME amount of stress trying to qualify for a loan to buy a home, and it doesn't look like it's going to happen (anyone got money to lend?) - I have a big down payment and full time employment, my credit score didn't make the mark. Got screwed up in the divorce (if you've been there, you know what I mean). This is disastrous for me for so many reasons. I've spent dozens of hours and weeks on the phone begging people for money - so degrading, humiliating, and frustrating. I've actually been told I don't have enough debt to get a loan because Ive been such a good saver, and that's hurting my credit score. WHATTT? It's crazy.

(as a friend pointed out: you can go out and buy a semi automatic weapon and mow down an elementary school, but you can't qualify for a loan with 30% down if you have a late Verizon bill).

When originally injured, I literally could not focus I was in such pain 24x7, felt like acid burning and glass scratching my tongue constantly. I didn't think I could go on one more day. Let's just say, I'm not cured, but I have come a long way.

Of course, mornings are still the only time of day I feel normal for an hour or two, and I go as long as possible without eating or talking. I haven't felt like getting out of bed much, anyway. This injury changes your lifestyle so much.