Hi Nancy, Sad but true many DDS do not have clue about the ramifications of an injured branch of the trigeminal nerve. This nerve has three branches with lil twigs feeding off of them. Any form of dental work can injure a main branch or a twig, i.e. Root canal, oral extraction, oral surgery like an apioectomy and yes, even dental implants. Also, injectible anesthetic can be placed in the wrong area OR one's anatomy is off kilter and nerves are not quite where they should be, per text book. Also, some people cannot take certain anesthesizing agents as this can compromise a nerve. I cannot take Lidocaine or Marcaine with Ephriniphine. (They call this EPI for short) I avoid them like the plaque. If a nerve has been injured/compromised the nerve in time can heal but some times it takes an astute DDS who realizes what has happened and seeks competent help for his/her patient. This is usually regrafting of that nerve within a 6 month period of time. Regrafting is done only by an expereinced Oral Surgeon and there are not too many of them out there that have the knowledge or feel comfortable or want to deal with this.

When I was injured, I found a doctor at John Hopkins but it was way after 6 months had passed. Three years after the fact, I flew to Florida and this is when I was DX with RSD. It had become full bodied by that time.

I am so much better now but very cautious when I am in the dental chair. I have 4 wonderful DDS that I educated about this condition. They use only short acting injections now and depending on how long a procedure is, I usually get two if needed. One in the beginning and one close to the end. They tweek where they inject. They tweek how they extract. They avoid the original injury site like the plaque. One slip up, this nerve can rear its ugly head and set me off into space. It has not happened in 6 years now.

I am not a health care professional and am sharing only "my" story. I wish you well.

Hi there, Nancy!

This is the old Silver Swan, still old and still silver! Was so glad to find the Forum now under a new name but the same familiar names, so glad to see them. Hope things are well with you. Glad to read your posts again. It's been a long dry spell with the Forum down.

Shirley H.

Kimmy,

The guy in the cubicle next to mine has fibromyalgia and TN; same as you, except he had the FM first and he's only had both a few years. I've had TN nearly 20 years, making me another longer-term TN'er. You don't look near as old as me, so I suppose you got it young.

Glad to make your acquaintance and look forward to seeing you around the forum.

Bob S

It's sooooooooooo good to talk to others who know what I live, ask the same questions I do...relate. I'm sorry y'all do though. On the other hand, I'm very thankful you're willing to share. I've gone through the gambit of being misunderstood with this.

I'll go into a bit more...

I was 20 when I began having facial pain. I was used to cheeks aching (I live in sinus capital). The pain progressively got worse until it was immobilizing when it was at its worst. I could do nothing but sit and rock while holding my face in the end. Again, I was 20 and a young mother who knew next to nothing about medical issues and doctors were akin to gods on earth.

I began going to drs. They would tell me that I had a sinus infection, sinusitis, etc. This continued for six months. They would give me antibiotics and pain meds and send me on my way. I was barely functioning at the end of all this and my mother came over during an "flare" and said, "Kimberly, you're a grown woman now, but if you don't go to the dr. and demand they take an xray or something, I'm going to cart you there and demand it myself."

I made another appointment and a different dr was on call (he was actually a surgeon filling in). He did a sinus xray and said he saw nothing. I couldn't take it anymore and bawled right there and said, "Nobody understands my pain. This isn't a sinus infection. This is horrible! I can't live like this. I'm beginning to think I'm crazy. Just because I don't scream and shout doesn't mean I don't feel like I can't stand it." HE took me seriously. He asked me specifically where the pain was and there were certain points...even going down into the two front bottom teeth. You could see the lightbulb go off in his head. He said, "It sounds like you might have Tic Douloureux". He told me that he believed my pain and would help me. He gave me pain meds, but also gave me a medicines he said was for seizures but would help the pain. He was right! Two days later it wasn't as intense but I didn't feel that I could function well.

Three days later thinking, "I finally know what's wrong with me," I got a call from the hospital saying they were referring me to a surgeon; that I had a large cyst in my right maxilliary sinus. I was petrified. The scheduled it for the next day.

I went to see him and he said it was the largest cyst he'd ever seen and couldn't imagine the pain I was going through. People were hearing me! They understood how bad it was! He told me I'd be having surgery right away. I asked if it would be outpatient. He then laughed at me. He said I would be in the hospital for 3-5 days as it was a very complicated procedure. He then warned me that people may have to stay long for IV pain meds as it was a very painful procedure. He was honest. I prepared.

I had the surgery (Caldwell-Luc) with reconstruction. Two hours after returning to my room I was going to the waiting room to visit with people. I passed the dr. in the hall and he did a double-take. He couldn't believe I was up, walking around. He asked about my pain. Certainly it was nothing I couldn't handle at that point. He told me at the first checkup that that's a testiment to the severe pain I was in before the procedure and grimaced.

The surgery pain was nothing compared to the pre-surgery pain. I healed well and went back to work before I was supposed to. All was going well.

About six months later, the pain began to return...same pain but much less. Within a couple of years it escalated to the point that I was back to the ENT. He said everything had broken down in the sinus and he had to go back in. I later found out that surgery probably wasn't necessary; that it was probably the TN then. He said there were MANY nerves cut each time I had that procedure. I remembered the ENT telling me with each procedure the chance for my face to droop increased (due to all of the nerves involved) and he was especially concerned because of my young age. My face doesn't appear to droop, excepting when I talk...slightly.

There were a total of four surgeries, many teeth removed (saying that all abcesses aren't seen on the films ), etc. It was a horrible time filled with misunderstanding by doctors, ER visits, dr visits, etc. Sometimes when drs. don't understand, they want to blame the patient. I went through it all...additional unneeded surgeries, teeth removal from drs guessing, etc.

Seven years ago, I was sent out to pain management by my GP. They knew immediately that it was probably nerve damage and helped me to treat it. I didn't feel comfortable there, though, for reasons I won't go into. I was referred to another specialist who is a neurologist first. He dx'ed me immediately with TN, saying that the pain was very specific to it. He said it was hard to say if the initial cyst caused the damage or the first surgery. I personally think it was the first surgery because I was pain-free for about six months there.

He said there was a procedure that he could do to the trigeminal nerve, but as soon as he mentioned it, he told me of the potential damage/danger. I told him that I couldn't consider that at this point as I'm still functioning too well with minimal meds. He agreed.

I've been with his office since with the best group of drs I've known...so knowledgeable and understanding. I went today, in fact, and they sat with me for 20 mins...listened to the mind/body/spiritual working I'm getting ready to do, about this website, etc. They're just great.

If you made it through this, I'm impressed. I didn't mean to go into all of that, but also I did. I want to let y'all know me.

Again, I so appreciate having those I can talk with who understand what it's like to say, "no, not much will help right now. I just need to pray for sleep" or "I can't go out today, it's too cold" or "I have to drink that through a straw because I can't risk cold at one side of my face right now. I could go on and on.

Thank y'all so much for being here.

KD

PS - I think I lied...I said 23 years and it's right now at 22 years that I've been dealing.

Hi Kimmy,
I think many of us can relate to the being fobbed off about the pain we experience, I had two consultants that were next to useless before I was put in touch with my current consultant, who is amazing.
22 years is a long time, I'm into 5 years and I'm bilateral, I cope pretty well right now, also my helping out at the TNA-UK gives me relief as I'm surrounded by people that understand, along with my forum friends this gives me a lot of comfort knowing I have them to turn to when things are tough.

I hope your feeling good today.

Take Care
Tracy.

HI Nancy:

What are the veins on the backs of our hands supposed to indicate? Please enlighten me!

Shirley H.

Shirley, I have no idea what validity this idea has, it turned up in a paper while I was scanning around the web and - unfortunately - I didn't make a note at the time so that I could easily pull up the reference. But what it said was that those veins on the back of your hands may be indicative of whether you might be prone to tn. If they are prominent and particularly squiggly that's a bad sign. Well, my veins are really really prominent and certainly wiggly and I began to verify this by asking all my friends to show me their hands! Sure enough, there's a big difference among individuals, and it isn't necessarily age related. So then I went back and checked a bunch of old photos and found a few that had my hands prominently exposed - wow, there I am, a slender young lovely in a sarong in a little grass hut in Fiji and my hands are like a contour map of veins. So I guess so far as I'm concerned the equation holds: prominent squiggly veins correlates with tn! But of course that means absolutely nothing however much it has amused me to do the checking out. And even if it did mean something, would that just lead to a whole generation of worry warts looking at their hands for years and waiting for lightning to strike? As a silly addendum, I wonder why it's so difficult to draw blood from those veins when they are so easy to see? When my arm was in a cast and they couldn't get at the usual place, and the other arm wouldn't work either (?) I said well just use these big veins. Very reluctantly, that's what the phebotomist finally did but what a hassle, took forever and by the time she was through my hand was so bruised and sore it looked like it had been run over by a bus. I was curious but she was in no mood to explain why it was so much trouble.

Not a very helpful bit of info I'm afraid, but go have some fun with your friends and check out their hands. Nancy

Kimmy,

22-years, 23, ... eternity. Hardly matters which.

Bob S

Hi Nancy:

Well, I didn't have noticeable veins in my hands till the last year or so - and I am now 77. And I sure don't have squiggly veins - so the theory doesn't work with me! I think, myself, that it is the drooping of various parts of our bodies that might produce TN - you know, the blood vessel/s drooping againt the trigeminal nerve. That is what I tell myself, anyway.

It is so good to read your writings again, Nancy.

Shirley H.