Hello, its getting closer to getting scans done for eagle syndrome and MRI for blood vessels. My main symptom is glossopharyngeal neuralgia shock/sharp pain in left tonsil area and occasional dull ache but have had a little burning but I will say I have bad acid reflux so sometimes I think that causes burn. I have been on Amitriptyline for a few years which has helped reduce the frequency and pain has been intermittent, but as im getting closer to hopefully figuring out whats exactly causing it. Well last few months I have had some slight pain in exact spot that it was on the original side. So im wondering if this seems more like a artery compression or eagle syndrome since it is possibly bilateral. I dont see too many zaps or shocks stories for eagle syndrome or maybe I havent researched enough. I have noticed clicking when I raise larynx/adams apple in the areas where the pain is. Also have had ear fullness and âCrunchingâ sound in ears. Not sure if its possible its just compression glossopharyngeal neuralgia and TMJ or if its more likely eagle syndrome. Anybody wanna take any guesses on what you think it is?
Hey @Mexiboii95 ,
Iâm Merl from the modsupport team. TN has been one of my diagnosisâ and I found hunting for answers, any answers, can be an ongoing nightmare. I had lots of ââŚit could be âxâ or it could be âyââŚâ but very little in the way of answers.
Personally, I went through a process of elimination. If someone made a suggestion of an answer I would investigate it. Get the scans. Speak to differing drâs to obtain differing points of view, then, considering all of the information, make an informed decision from there. Trying to make an assessment and a decision without having all of the information can lead us down some awful dark holes of worst-case scenarios.
Why do I say this? Because I did exactly that. I had partial information and acted on it. I had medicos all âmaking a guessâ, a âwrong guessâ as it turned out. At the time they really had no firm idea of a cause. They couldnât find a cause, so my reported symptoms were labelled as âpsychosomaticâ. The medicos even had me locked up in a psych ward because âYou just canât be in THAT much pain. We canât find anything. We think itâs all in your headâŚâ Little did I know just how real that last statement would become. I learnt it was easier to âtryâ and ignore it all and get on with life.
So, one day Iâm driving down the road and the lights went out. I couldnât see. This made the medicos investigate a bit more and they found a little nasty growing right in the centre of my brain. They came out with the line âOhh, look what we foundâŚâ as if it was all something new. It was operated on via a craniotomy and I was told âAll Fixedâ, only it wasnât. I was getting some âweird and wonderfulâ side effects and was given a âneuralgiaâ diagnosis, a nerve pain diagnosis and a psychosomatic diagnosis again. I trialled all sorts of medications from heart meds to psych meds, from epilepsy meds to Botox. I trialled all sorts of treatments from reflexology to acupuncture, from Bowen therapy to a hydrotherapy. My theory was that if there was an answer I wanted it, so I gave them all a decent trial. There were proâs and conâs to them all, but none were my âkeyâ.
Then the medicos decided I needed another neurosurgery, which turned into another and another. Iâve now required 6 neurosurgeries and Iâm still symptomatic today and still with no answers. I think the closest Iâve come to that elusive âanswerâ was from an ophthalmologist who bluntly said to me âWell, youâve had multiple brain surgeries⌠âŚWhat did you expect??âŚâ I didnât expect âTHISâ.
Now I investigate everything. What are my options?
Please investigate ALL of your options before you decide to go down the surgical route.
Merl from the Modsupport Team
Mexi, i have no answers (like ModSupport above). I do not know if the trigeminal nerve controls the tongue or throat area â I just donât know. If it does maybe its TN you have. Iâm certainly not a dr. Somebody, somewhere can probably know this. Hereâs what I suggest to anyone that has these neurological issues. I recommend finding the best neurosurgeon you can find. Just any NS wonât do. The better ones are âusuallyââ in the bigger cities or near a really big medical center. Iâm near UAB in Birmingham, AL. And this is what I do when acquiring any new dr Iâve not been to before. I go on the BCBS website and search for a dr in that field. Lets say neurosurgery. On the BCBS website you can look at a list of NS in that area. If you live in a small town, do the search for a bigger town near you. On that list of NS they will show how many reviews a dr has had. I look for the ones thats had a lot more reviews than the rest. These reviews are usually all positive. I did this with a NS for my trigeminal neuralgia and a NS for spine surgery. I canât be more specific since Iâm no dr, and I canât have extensive discussion with you like they will.
Eagles Syndrome is a very simple diagnostic process. The MRI well confirm or deny this. They will measure your styloids. There are some variations between various hospitals, but generally speaking, if your styloid is longer than 2.5 cm, (Some physicians and clinics have 3 cm as their minimum) you have Eagleâs Syndrome.
Lots of people have Eagleâs syndrome, and they donât know it. But the symptoms can be devastating. In my case, I had bilateral Eagleâs syndrome and I needed both styloids removed because the styloids were actually compressing the jugular vein. Again, that was the finding of the MRI.
But I also want to mention to you another piece that could possibly be an issue. Please look at Geniculate neuralgia, and nervus intermedius neuralgia (yes, thatâs the spelling.) Itâs too much to describe, but itâs often described as having âan ice pickâ stabbing you in the ear
I have had surgery for bilateral Geniculate Neuralgia on both sides.
Whereâs Dr Rudy Wells & Oscar Goldman when you need them. ( $6 Million Dollar Man Ref ). 
I had a MVD in 2014 and then had a fall in 2023 in which I hit my head hard and lost consciousness. The screws on my plate (2) have lifted. I now have GPN and head pain from the lifted screws. Iâm on Topramax 175 mg.. I really canât tolerate anymore. The deep ear and throat pain are gone and temple zaps are gone also. I have scar tissue which only exacerbates my situation. The ear pain was so bad I mistook an ear infection for GPN pain and ruptured my eardrum. My voice is often hoarse. This is a journey. I do vibrational meditation to try and help myself and exercise. The medical Profession tries to help, but it hit or miss. I get Botox every 3 months for horrible headaches. I hope you get some relief. Try Topramax.