Does anyone have the feeling of canker sores on the sides and back of tongue and throat immediately upon eating certain foods, drinks, or even the texture of certain foods can bother. I read some members have tongue pain after coffee or acidic food or even just burning for no reason. The problem my son has had for a year now is this feeling of burning and canker sores feeling on the rear sides and back of tongue and then muscular pain in the entire tongue and throat. It can happen with something as simple as a plain unsalted cracker due to texture. It can alao happen from any preservatives, salt, fruits, seasonings, sauces, oil, etc. He has to eat very plain. Oddly enough he can drink beer or have bacon and it not cause these reactions. His tongue and throat look normal except his tongue is scalloped. He also has headaches and neck and shoulder pain for the last year. Dr. Hackman is not sure his symptoms are from eagles or from glossopharyngeal nerve damage from his tonsillectomy or something else. His throat never felt right from that surgery which the doc said eagles doesnt develop immediately after a tonsillectomy. It takes some time. His symptoms were mild right after compared to how they have increasingly gotten worse over 12 yrs. His styloids are 3.3 and 4 so that part makes sense but the immediate pain that lasts for a wk at a time after a trigger food isnt too common with eagles. 2 other docs have said its burning mouth syndrome. He does have military neck. Dr. Hackman has approved the bilateral surgery, just cant say if the removal will help. If nerve damage then unlikely it will. One ct scan 2 yrs ago showed slight IJV impingement but the latest one this summer did not reflect it in the report. A c spine with flexion and ext MRI will be done this wk as the last imaging to help make the final decision about surgery. Its very hard to go into a surgery when the doc doesnt have a great feeling and when the tonsillectomy 12 yrs ago started all this. There is no sign of reflux and many scans of the brain and skull base have not come back with anything except mild low lying cerebellular tonsils of 4mm. He doesnt have chiari symptoms for the most part and that was ruled out. He did have his hyoid bone shortened 7 yrs ago and that helped other symptoms of the chicken bone feeling but other irritation symptoms came back after a yr. Pain meds do not help at all. He was on 1200 mg of gabapentin and it didnt do a thing. Several others as well. Sorry so long but we are really in need of some feedback especially if anyone has had these same food irritations. Thank you!!
I’m so sorry that your son has suffered for so long. His pain sounds miserable plus having a very limited diet at his age is certainly not fun. Honestly, his symptoms seem to be following the course that ES symptoms do with or without specific provocation i.e. they come & can last awhile then go away for a bit only to return later.
Dr. Hackman may not have suggested this, but I think it’s a possibility that your son had ES at the time of his hyoid bone resection. I’m guessing it was either just beginning or that it was missed because of the focus on the hyoid. Remember that styloids don’t have to be elongated to cause ES symptoms. If they’re normal length but very angled, curved, pointed or twisty, even normal styloids can cause problems. I understand his current symptoms started at a lower level after his tonsillectomy so am thinking that maybe his glossopharyngeal nerve was irritated or damaged at that time but the styloids have perpetuated the problem so the nerve hasn’t been able to heal & symptoms have only gotten worse. My theory may be a stretch, but if I’m right, having the bilateral styloidectomy could make a huge difference for your son.
Has your son tried icing his neck to see if that helps the nerves calm down? In some cases ice is very helpful & in others heat works better.
Jules has noted that making a mouth rinse of baking soda (bicarbonate of soda) & water & swishing with it several times/day can be helpful in reducing the tongue symptoms.
That sounds really rotten for him! Obvs as surgery does carry risks so it’s understandable that he’s concerned about having another one, especially as Dr Hackman isn’t sure that it will help…I hope that you can find some answers for this; I had and still occasionally have burning mouth but it’s not too bad and I haven’t used the bicarb for a while, I’ve not noticed any foods which affected me, I’m sorry. Sending you both hugs, must be horrible for you too seeing him in pain
Thank you for your response. I appreciate you speaking with me in the past and again now. Dr cognetti did not think his styloids were an issue when he did the hyoid a few years ago as well as when he reviewed new scans 2 yrs ago. But they have grown since then too. I can see how your theory could be correct which i think along those lines on 1 hand and then the other makes me think not. Its so hard because no way to know without trying the surgery. Nothing seems to help in the meantime. Thanks for your input.
For decades, the right side of my tongue (side more affected by ES) has had a burning sensation and tastes a sour taste. Certain foods (sour, hot, cold, rough) certainly make my trigeminal nerve pain worse. I’m not sure what makes the tongue symptoms worse or better. It does seem linked to nerve compression due to ES.
