Saturday, August 21, 2010

Where does it hurt?

Curious to know where everyone else feels their pain - the same, or different area (Kritty mentioned the throat). For me, pain has is far worse in the central part of the trigeminal nerve, the maxillary branch (deep in the nerves of the upper teeth and extending into temple), than another other branch, with the addition of the burning tongue (lingual nerve) on the left side.

I feel like kind of like I've been hit just below my left cheek with an aluminum bat, and they stitched me up, but the bruising inside never went away. Random online research makes it sound kind of like the pain in my cheek is NICO, (Neuralgia-inducing Cavitational Osteonecrosis) caused by long-term infection and root canals in the area, or is this normal pain that accompanies everyone's lingual nerve injury? The dental docs just scratch their heads and say they don't see anything.

I'm supposed to return to the orofacial pain clinic for the handheld wand up against my upper gum where the pain is worst - it emits a tingling sensation which can be adjusted so that it's effective without being painful. A few of these treatments are supposed to help - I'm told it's helped others. It did seem to reduce pain for a few days following the original session. Anyone know anything about this treatment? It's $100 a visit - that's like $10/minute!

This is, again, being done at the only teaching hospital for Dentistry in my area. I have found no place else that understands my situation - I may as well be speaking Russian.

I've been doing more research on meds, as I am going to see the pain doc this week and the gabapentin just ain't cuttin' it at 500mg/day. Another $165 for the pain doc visit. Ka-ching.

The choice seems to be antidepressant or antiseizure.
the list seems endless, all with various side effects.

What has/hasn't worked for YOU?


  1. You are messed up and you should contact Edwin Zinman DDS for a evaluation on your situation asap.

  2. Thank you for this advice - I will call him. Seems like all the specialists in this area are in San Fran! Well, I can't blame them, it's a great town. However, I have discussed my case and been turned down by 6 atty's already. But as you can tell, I am not one to ever give up trying for something better, especially when I'm in pain every day.

  3. jane, will you come to boston? i'm going to see bruce donoff in 2 weeks. he's a trigeminal microsurgeon at mass general....highly acclaimed. repairs damaged trigeminal nerves due to a whole host of injuries including dental. it may be worth a consult for you. i'm going to talk with him about my own case to see if he can explain my mechanism of injury. i'll let you know what happens.

    still having neck pain. not throat, but the outside of the neck; the sternoclastoid muscle. not sure if it's related but it being on the same side, it's suspicious. what was your neck/throat pain like? did it subside for you?

    take care,


  4. K,
    A few months ago I had pain down the side of my neck, too - there was and still is a "growth" there you can feel under the skin. Possibly unrelated but suspicious, like yours. I no longer have throat pain, but cannot raise my voice loudly or it hurts.

    I WISH I could afford to come to Boston, and thank you for the invite- I looked up Dr. Donoff @ Harvard - impressive resume. I have a cousin with connections at UMass, but she couldn't recommend anyone who specializes in this type of injury. I am very interested in hearing about your visit!!

  5. okay this is weird...i am also having pain down the side of the neck with a growth under the skin. it is small but i can feel it. it is under my jawbone area where the jaw meets the neck. i'm going to my pcp tomorrow to have the usual rounds of scans where i suspect nothing will be found. maybe a round of steroids may help.

    UMass, while a decent school with a medical campus, is not helpful for speciality cases. you need to be in the city, and even boston is down to a few doctors for trigeminal pain.

  6. Pain doc yesterday, report: wants me off gabapentin, wants me to do another 30-day round of Mobic anti-inflammatory (since the inflamation is likely what is causing the pain) and if that doesn't work, can always go back on gabapentin. Asked about Topamax, asked about Neublastin, got "no".
    The whole visit took 2 minutes- I sat in the dr. office 4 hours - no lie. Our healthcare systems sucks. Our economy sucks. If I didn't have kids I'd move out of the US- seriously. OK, done with my rant for the day! Everybody have a good one!

  7. what an idiot. all pain is inflammatory. neuropathic pain is inflammatory. part of the process includes a "soup" of inflammatory markers which float around in the system making things worse. medicine has not found a drug which can address 100% of the "soup" to shut off the pain signals. your doctor is giving you a teaspoon (Mobic Rx) to work from a very large bowl of soup (nerve injury). what a dope.

    Neublastin won't be here for a long time. it's still in clinical trials.

    i hope this med gives you some relief; my fear for you is your pain is going to worsen. if this happens, contact the doctor right away and tell him, "This medication is inappropriate. I need something for neuropathic pain immediately."

    good luck jane. by the way, i emailed you; did you ever get it?