Hello - so pleased to have found this site.
Do not think that it is Glossopharyngeal but have done more research and Geniculate Neuralgia seem to fit more of the symptoms my 11 year old daughter is experiencing.
Any help advice appreciated.
11 year old Canadian fraternal preemie twin (32.5 gestation) history of chronic ear infections had grommets placed in both ears age 2 & 4 great success.
This past July had a bad viral infection - congestion, cold, fever achy low energy etc ear then became infected
this time though she experienced intense bilateral apin the pain was intermittent she would describeit like a needle going deep into her ear or like when her old ENT (retired now) had to reach into her ear to pull out old tube. sometimes the pain like a tweezer stabbing deep inside her ear.
She was treated with amoxicillian and ciprodex. Even though ear infection cleared up the pain never subsided. M
I remind you this happened in July (summer - a time of fun for kids) Her summer is normally filled with fun playing with friends day trips, swimming etc - she did not want to do much of any of this because she would complain of ear pain. Referral made to new ENT (old one had retired) I took her to family dentist before seeing New ENT family dentist did not think TMJ or Teeth related
saw New ENT said maybe eustachian tube dysfunction - wrote as well tympanosclerosis and atelectatic drums (I asked about this but told not severe) day surgery was scheduled for Oct 4. Tubes placed in both ears,
pain still continued !!!!
Note: had also used Nasonex spray, Avamys spray and neti pot as Dr. perhaps thinking would assist although she never complained of nasal congestion. As well tried laser acupuncture, massage therapy for neck and shoulders as she would tightening all those muscles whenever she feels the short intermittent intense pain. Tried 4 sessions of cranialsacral therapy but do not think that craniosacral therapist was that experienced - will now see an osteopath who is very experienced
Went back to ENT (tubes look fine) but the pain still continues - put ciprodex drops in her ears two days after surgery - she immediate screamed and cried saying it was like something was stabbing her ear (not burning) asked if he could make a referral to specialist ENT at Sick Kids that my other daughter sees because of other ear problems but he felt not ears referred to Sick Kids dentistry - both dentist and oral and maxillo surgery concluded not TMJ nor teeth they asked why does ENT feel it is not ears - asked if MRI has been done
Went back to family doctor who will order MRI but is saying she if a healthy child ears look ok almost feels pain
Dr. made comment 11 year old should be managing this pain better -
very sad to hear that as even adults would find it difficult to deal with pain that feels like someone is sticking a needle or tweezers deep in your ear
This pain started in the summer (ie not back to school) it does limit itself to Monday - Friday
even when she does do something fun she still feels it could be 80 - 100 episodes per day
now finding worse in the evening but does not wake her from sleeping
upsetting to hear considering this now going on for 4 months - Tylenol or Advil offers little to no relief
This has now been over 4 months that she is feeling this bilateral intermittent pain - at times it is very intense other days bearable
Will have MRI but with geniculate neuralgia I have read that often MRI shows no nerve damage or lesions?
Have heard that certain anti-depressant medication can alleviate nerve pain
again any help, advice appreciate
Many many thanks