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.