I’ve had this horrific pain for 4 1/2 years now and it’s affect my quality of life more than anything else in my chronic illness journey. Some other symptoms are lots of anxiety (I’m sure from vagus nerve compression as well as being in pain for years), IBS worse the past couple years, occasional bloating and feeling of not being able to catch my breath after eating. I have had a CTA and CTV and I do have elongated and calcified styloids and have consulted with Dr. Osborne who recommends they come out but I can’t afford him. Chhetri at UCLA can’t even get me in for a consult until July 31 and I’m considering Hackman but I’m hoping to hear if anyone has gotten this particular type of symptom relief. I’ve tried various meds like gabapentin, nortryptiline, etc. with no relief.
Has surgery helped anyone here with Burning Mouth Syndrome (specifically neuropathy of upper palate)
@wendy5 - We have had members w/ burning mouth symptoms who did get reduction or complete relief once their styloids were removed. Burning mouth is typically caused by the trigeminal nerve which is one of the cranial nerves most commonly irritated by elongated styloids. Once the pressure is off the TN then it is able to recover (sometimes it takes a number of months) & the symptoms reduce or resolve.
IBS/bloating & the feeling of not being able to catch your breath along w/ anxiety are generally related to vagus nerve irritation or compression by the styloids so those symptoms are likely to resolve or at the very least reduce once your styloids are gone.
I’m sorry the medications you’ve tried haven’t been helpful. You can also try icing your neck for 15 min. every couple of hours or even 2-3 times/day. Put a thin cloth between your skin & the ice pack to prevent ice burns. Gel ice packs work well. Another option is to get OTC lidocaine patches (5%) & put one on each side of your neck. A number of our members have found those to be very helpful in reducing symptoms. Finally, a Rx muscle relaxant has been helpful for some of our members who weren’t helped by nerve pain medications.
Dr. Hackman is a good choice since he does bilateral surgery so you get both styloids out at once. He’s also cuts them very close to the skull base. Initial healing is a bit more uncomfy but most of our members who’ve seen him have been glad not to have to face a second surgery. If you’d prefer to stay in California, Dr. Samji in San Jose is also very experienced w/ ES surgeries, however, you’ll be looking at one surgery for each side if you see him. He did my surgeries, & I’ve had good outcomes except he doesn’t look for internal jugular vein compression which I had, so I had to have a 3rd surgery elsewhere to deal with that.
I’m sorry that this symptom is so painful for you, & that you can’t afford the surgery with Dr Osborne. I hope one of the other doctors that @Isaiah_40_31 has suggested can help you without too long a wait!
We’ve had some discussions about BMS, so you can search those out if you have time, one other thing which has been suggested is Low Dose Naltrexone, here’s a couple of discussions which might be helpful:
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