I am a New Yorker who has unfortunately lived with V2 neuropathy since 2004. I’m 43 yrs old. I am grateful to still be working in the job I love. I have had failed MVD (misdiagnosed). Multiple pulsed ablation. Injections; Botox; etc etc etc. My pain started after an upper molar was extracted. That was the day life as I knew it changed. Here for support.
Welcome, and sorry you are also going through this. I also have neuropathy that started in an upper pre-molar. It was just an odd feeling at first, turned out to be infected, then never seemed to recuperated from the extraction. What type of pain do you have and is it constant? Do you get any relief from any of the “tricks” such as lidocaine, capsaicin, chewing gum, heat etc…?
Hey ziggy, my pain at first was pretty uncontrollable and sometimes still is. I have been told after my upper molar extraction my sinus maxillary floor of my sinus was fractured. I spent a month in hospital in 2004 after this extraction. So many docs over the years. I had an MVD which I never should of had. I suffer from triennial nerve damage. Doctors seem so so unwilling to look inside my maxillary sinus. Have had so many tests procedures meds. Right now I get by with a compound lidocaine cream with a bunch-of other stuff in it. I take others meds orally too. My pain is burning and aching. Different from day to day. But always is in background. How do u get by. I always wondered why no one ENT oral surgeons neurosurgeons never want to explore my maxillary sinus where this all began. Anything you or anyone can recommend would b greatly appreciated!
This may seem silly but it has really helped me, especially when the pain is ramping up and I start to get panicked. Be sure to use pure essential oil of lavender (not lavendum), take the lid off of the bottle and ‘huff’ the aroma - inhaling through your nose and mouth at the same time. It doesn’t help a bit with the exhales but does let you get a nice deep breath in. Good luck!
~you know, you might want to make your own tincture of lavender. You could gargle with it.
My pain is a similar aching, burning, tightness that ebbs and flows but is always there. I’ve somehow gotten it to a manageable level. Primarily through “distracting” the nerve. I’ve used lidocaine and capsaicin patches and creams, chewing gum, dental picks, and now a mouthguard (at home). Meds haven’t worked well, and I’m very anti-med since I think 35 years of anti-depressants is what caused this in the first place.
A couple of suggestions–try keeping a journal of your day, what you eat and drink, sleep, activities, and pain levels throughout the day. You will likely find things that make it worse, and sometimes even better. I do well when I have good sleep, eat well, and avoid alcohol and pain killers, and of course stress. Supplements seem to help a bit. And staying busy.
I’ve heard of people with pain in the sinus doing well with sprays that include topical anesthetic(s). These are sprayed up the nostril, so that might be something to look into. If you haven’t already, you might see if you can get a dentist to do a high-resolution CBCT scan of the area. It is amazing what they can see with those things.
So very sorry you are suffering. I am a dentist with the same problem. Mine was from a salivary gland surgery. I recommend to only see head and neck oncologists. They would have taken the proper cone beam CT’s and seen you problem in the sinus right away. Us dentists refer to oral surgeons when we are unable to treat, and the oral surgeons refer to head and neck oncologists . That’s the pecking order. Have the oncologists refer you to a neurologist they work with all the time, they know who works with our problem all the time, not all neurologists are knowledgeable with head and neck pain. I am in Chicagoby the way.
Good luck to you.
Hi! My pain started after a dental appointment also. I found that the dentist damaged a nerve in my face and I had a bone rubbing up against the same nerve so it never could heal. I am diagnosed now with Eagle Sundrome. It is worth a ct scam to rule out this rare disease because treatment is totally different then my atypical facial pain treatment options.
Thank you guys for all your support and reply’s. Some days are better than others. Really wonder sometimes if a trip to a major center like Mayo Clinic or Johns Hopkins might help. It’s really therapeutic to have a place to talk to others living this.