Help for my daughter -

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 (tubes) placed in both ears age 2 & 4 great success.

This past July had a bad nfection - congestion, cold, fever achy low energy etc ear then became infected

this time though she experienced intense bilateral pain - the pain was intermittent she would describe it 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 like she didn't believe about the 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 not limit itself to Monday - Friday she is not making this up!

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 see this for our daughter 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? do not know dangers for children though? and would need to get Dr. to refer to neurologist

again any help, advice appreciate

Many many thanks

My first bout of GPN followed two episodes of sinusitis with a rare pathogen . I lost part of my hearing and was placed on steroids to prevent the loss from becoming permanent . AS I was coming off those meds I developed the GPN. To this day one of my most prominent symptoms is a stabbing ear pain . I have asked and asked if there is any way to visualize the interior of my eustachian directly and been told there is no way to do a direct exam . I requested this b/c at times the pain 's distribution seems to run the route of the eustachian tube . An ENT from Duke Medical School rec. I try EMLA , a topical anesthetic .I could not function without it …perhaps your doctor could try it as an additive means to help the pain ? I apply just a small amount to a Q-tip and apply it near the ear drum . WHY it helps is a mystery but it does .

That’s messed up a Doctor would say that bet he wouldn’t last a day in her shoes ,sorry to hear she is in pain

Dear,

I can understand what you are going through to see your child suffer with such pain. Secondly, I would suggest stop going to internet and research and conclude as that may not be the problem with your child. You are not Dr. and you may conclude or worry for something which may not be the case. Its just and advice.

Take advice from the Drs. and see if they suggest to go for MRI. Do tests and diagnoses and let the reports come out, If MRI doesn't show nerve damage, at least you will have that relief that you did it.

I pray for child and wish she will soon be fine. Sometimes its those bad days that nothing is fine. Keep doing prayers and spend time with your child. Try to divert her/his mind from the pain.

I pray that she will be soon out of this pain.

regards,

Sorry to hear of your daughters problems. I was actually going to suggest eustachian tube dysfunction as the glossopharyngeal nerve has a branch that goes into that section.

I'm a bit of a rarity. I have multiple sclerosis, Sjogrens, GPN which they think is associated with MS, but also could be Sjogrens and just got diagnosed with another rare condition a few weeks ago called Superior Semicircular Canl Dehiscence. Approx. 1% of the population have it, so even less than this neuralgia...

Each type of imaging shows different structures of tissue and/or bone. Some are more suited for particular areas than others. An MRI of the brain will pick up any lesions (depending on strength of MRI, as stronger ones will pick up smaller lesions). They may also pick up compressed nerves, but not always. A 3T machine takes a better quality picture than a 1.5T machine, so do ask the question when booking your MRI what is the machine's strength and try and get it done on a 3 Tesla, as the difference in picture quality is AMAZING!! Better chance of picking up smaller lesions or abnormalities etc. There are stronger ones around now (7T from memory), however, they are mainly used in research.

The other thing you should consider having is a high resolution CT scan done of the inner ear, PLUS also the styloid processors. This needs to be defined on the referral as they are separate areas. If the styloid process is elongated (larger than a particular length) it is called Eagles syndrome and can be causing her pain. The inner ear CT will look at the cochlear, eustaucian tubes and also the bones of the inner ear. A 3D CT scan is even better!!

I am not sure which country you are from?

Yes, some of the anti-depressants and also anti-epileptic meds can worsen pain as it all boils down to our personal body chemisty - some people can take certain drugs with minimal issues, other can react the opposite. It is a trial and error process. SSRI antidepressants (Prozac etc) should not be used in children under 22 either. If they are, there needs to be very strict monitoring of them because they are associated with depression (yes anti-depressant can cause depression and they don't really know why), and quite a number of suicides have occurred in this age bracket. Sorry don't mean to scare you but that is a fact. But as mentioned it is the SSRI ones that are an issue. The others don't tend to cause as many problems but still a child must be monitored closely for any sudden mood swings etc. I can supply you with the information that the doctors have on meds if you like. Just let me know the name of the medication.

If you are in Australia I know of a fantastic neurologist for vestibular issues which is who you should be seeing first. Someone who can thoroughly check out your daughters ears with proper hearing and balance tests and other tests in order to start ruling out problems.

Sorry just read you are from Canada. I can try to find out a really good vestibular neurologist for you,

Please let me know where in Canada you are.

Kaz said:

Sorry just read you are from Canada. I can try to find out a really good vestibular neurologist for you,

Nice to talk to you via chat tonight. Here is one more for you to consider. The first name I gave you tonight is head of staff at Toronto and can do everything there from testing to CT's etc and specialises in rare conditions. The second one has the special interest.

This one is a clinic which also provides everything in one stop. These guys are also involved in research, so will be up to date on any of the more rare conditions.

http://sunnybrook.ca/content/?page=otolaryngology-head-neck-surgery

Please do let me know how you get on with the MRI and also who you decide to see as I will be keen to see what they discover. I think you can't go wrong with the first specialist I gave you, or this clinic. The other is excellent too, but not sure if they have all the testing facilities in house.

I just saw Dr. Shahinian from the Skull Institute ( los Angeles ) for my atypical glossopharyngeal neuralgia.....he's brilliant. He can tell you what tests over the phone, help you track down where in your area, and then Skype consult with you. Go Google his website. Good luck.

I have been having the same symptoms as your Daughter following a wry bad Cold an ear infection last Christmas. I have been looking for the same answers.

I will let you know if I find out anything from my research & several Dr. Appointments.

My sureon gave me a nerve block before he would do the surgery. It was a confusing test with him finding the glosso but at least my pain went away for a day. It was his way of telling the correct diagnosis before performing that serious surgery. I hate that your daughter is having so many issues with pain.? My prayers are that you find the best and right doctor for her.

Hello -thank you for all your messages :slight_smile: and for your information -will keep you posted



Kaz said:

Nice to talk to you via chat tonight. Here is one more for you to consider. The first name I gave you tonight is head of staff at Toronto and can do everything there from testing to CT’s etc and specialises in rare conditions. The second one has the special interest.

This one is a clinic which also provides everything in one stop. These guys are also involved in research, so will be up to date on any of the more rare conditions.

http://sunnybrook.ca/content/?page=otolaryngology-head-neck-surgery

Please do let me know how you get on with the MRI and also who you decide to see as I will be keen to see what they discover. I think you can’t go wrong with the first specialist I gave you, or this clinic. The other is excellent too, but not sure if they have all the testing facilities in house.

Thank you




Suzanne said:

My sureon gave me a nerve block before he would do the surgery. It was a confusing test with him finding the glosso but at least my pain went away for a day. It was his way of telling the correct diagnosis before performing that serious surgery. I hate that your daughter is having so many issues with pain.? My prayers are that you find the best and right doctor for her.

Thank you



Jubilee said:

I will let you know if I find out anything from my research & several Dr. Appointments.

Thank you



Jill said:

I just saw Dr. Shahinian from the Skull Institute ( los Angeles ) for my atypical glossopharyngeal neuralgia…he’s brilliant. He can tell you what tests over the phone, help you track down where in your area, and then Skype consult with you. Go Google his website. Good luck.

Hello Jill I just read that you have seen Dr. Shahinian from the Skull Institute in LA. Is he good in treating the GP neuralgia? Does it take long to get an appointment and is it difficult to get in contact with him? I would like to have my glossopharyngel nerve cut and I am wondering if he performs this surgery ? regards Mike