I dont often post but i have read over the past year everyones stories and comments and i have to thank you all for posting as the info has been an incredible source of knowledge and comfort to me.
Im incredibly frustrated and wanting to ask if anyone else has been in the same boat and the outcome. Like many of you i have been on a long journey trying to get answers. I had a bad car accident two and a half years ago and started to develop strange tingling down my arms, across my face and eventually my tongue began to tingle and burn and i have difficulties swallowing. As time passed i developed pressure and pain behind my eye, TMJ issues as well as a cough, heartburn, neusea and palpitations. I also get quite light headed when walking or on extreme rotation of my neck and when lying down.
Originally i was told it was anxiety (who wouldnt have anxiety in our situations) After months of medication and stillbeing in the same boat i went back to the doctor who did an mri.
An Mri confirmed i had multiple disc buges at c345 and disc protrusion and nerve root enroachment at c7. Apparently all from my car accident. This was then determined to be the cause of my pain and left to treat by a physio but my symptoms kept getting worse who then suggested further investigations were needed.
I was then referred to a oral maxifollo surgeon due to suspected TMJ dysfunction. He cleared my TMJ joints saying they function perfectly but did suspect i have glossopharyngeal neuralgia so referred me onto a neurologist.
A neurologist did agree it was glossopharyngeal neuralgia and wanted to order the skull based ct and mentioned eagles syndrome as a rare but possible cause of my symptoms especially factoring in my symptoms began not long after a car accident. Low and behold I have a bilateral elongated styloids measuring 38mm on the left and 39mm on the right.
I was then shipped on to an skull based ent who did agree with the diagnoses but wanted me to seek an opinion from a neuro spine surgeon to rule out my disc issues as being the cause. He just said its important to rule those out as the operation to remove the styloids is risky and doesnt always work so he wants to be 100 percent certain there isnt another cause.
This is where my frustration begins or gets worse lol.
Under the care of the neurosurgeon i underwent a lignocaine spray trial which only eased symptoms slightly some not at all.
I then tried tegretol but it did nothing for neuralgia other than making me incredibly sick so was taken off the medication.
3 weeks ago i underwent a glosspoharyngeal nerve block that did very little. I had slight relief with my tongue symptoms but nothing else. Based on the outcome of the nerve block i was told by the neurosurgeon that i dont have eagles syndrome and he was going to diagnose me with Atypical facial pain without a cause.
I am frustrated beyond words. I do not understand how three other doctors all said i have eagles and this doctor disagrees.
Im now having to go back to the ent and hope and pray that he hasnt changed his mind on my diagnosis due to the neurosurgeons opinion.
My question to you all is has anyone else had a glossopharayngeal nerve block that didnt really help?? Yet still diagnosed as having eagles?
And my other question is Am I wrong for understanding 38 and 39 mm is considered long enough to be classed as having eagles syndrome if you are symptomatic??
Sorry im so frustrated as i have 2 doctors both claiming I do and 1 claiming i dont and that my confusion is because I was told i have eagles… urghhhhh
So sorry that you’re struggling to get treatment! Unfortunately Australian doctors seem very reluctant to treat ES, I don’t know why
ES is listed as one of the potential causes of GPN, it can also cause Trigeminal Neuralgia & Atypical facial pain, and your styloids are over the 2.5cms ‘average’, so not sure why the neurosurgeon felt he should rule out ES! The Lidocaine injection can be used as a diagnostic tool, but it doesn’t always help, so isn’t clear cut. Was it because this & the nerve block didn’t help that the neurosurgeon came to that decision? Not sure about the nerve block, but I recall one member who had an MVD for Neuralgia which made no difference, she then went on to have ES surgery. It doesn’t sound as if the Neurosurgeon really investigated or treated your nerve pain very well either- there are other nerve pain meds which might be worth trying. I had a C5-C6 bulging disc; I had some physio for that & it did improve quite a bit with that, just gentle exercises to do, but it really helped while I was waiting for surgery, I don’t know if it’s possible for you to try that at all? It’s good that they’re investigating all avenues before a surgery which does have some risks, but equally when you have ES symptoms & clearly elongated styloids, it doesn’t seem to much to think that ES is possibly the cause! We do have some research papers in the Newbies Guide Section which mention TN & GPN as symptoms of ES, so it might be worth you printing these off to take with you to see the ENT?
Many members have difficult journeys to get a diagnosis & have to fight to get treatment, so keep strong & keep pushing! Best wishes, & hope that you get somewhere with your ENT appt.
I’m so sorry to read about all you’ve been through. Jules has given you good advice the best of which is to keep pushing for the ES diagnosis & surgery to help resolve your facial pain & other symptoms. It does sound like your neurologist is a bit clueless about ES & the problems/symptoms it can cause and I totally agree that he didn’t seem very proactive in trying to help treat your nerve pain. He gave up too easily…
I will pray for your ENT to stand his ground regarding his diagnosis since he only sent you to the neurologist to rule out your symptoms coming from your cervical disc situation which it doesn’t even sound like he did. I totally understand how frustrating that must have been!!
Please let us know how your next appt. w/ the ENT goes.
yes i am noticing a definite trend with Australian doctors. There is definite reluctance from many doctors. its hard to get diagnosed here let alone treatment. Im just frustrated because i feel as tho im so close yet so far and being used as a guniea pig in the meantime whilst struggling badly. Ive had pain for quite some time now and can deal with the tongue burning but after my glossopharyngeal nerve block i feel like im being choked constantly which is bothering me the most. Its like i have acid reflux but doesnt respond to PPI’s, i cant help but think its possibly related but this symptom that i complained about was ignored by the neurosurgeon.
In response to your question the Neurosurgeon decided despite that fact that my ct shows elongations that because the glossopharyngeal nerve block didnt work that its not glossopharyngeal neuralgia and therefore not eagles syndrome. His call is A Typical facial pain with no cause. He therefore has referred me onto a pain specialist. When i questioned why the ENT and Nuerologist said i did have eagles but just wanted to rule out my disc pathologies he told me im confused and believe i have eagles due to them telling me that and if i did have eagles the trials he did would of worked. He then told me that half the population have elongated styloids and i shouldnt stress because it wont grow any further. Everything i have read here contradicts everything he told me and im just so frustrated as now im worried his opinion will put doubt in the ENT’s mind.
I will print off those articles so thankyou for that advice. Im so frustrated and feeling defeated that i didnt even think to do that. I have my appointment on the 31st of march so hopefully i will get further!! Im not wanting to rush into surgery by any means but that being said im getting to the point where everything is failing and im sick of living in constant pain and would like a confirmed diagnosis so if i decide to go down that road its an option instead of back to the drawing board and the blank expressions ive been given by so many doctors when i start telling them all my symptoms lol
Thankyou for your kind words and prayers. I hope he does stand his ground as well but i now have my concerns. I would be more accepting of the neurosurgeons diagnosis if it 1 didnt contradict the other doctors and 2 if he gave me something more to go from than just A Typical facial pain without a cause. Im not doctor but the pain and discomfort im experiencing doesnt arise without a cause and i dont understand how you can say there is no cause when a ct clearly states there is. I cant help but feel like ive been caught in (excuse my language) a dick swinging competition and my final diagnoses and outcome will come down to who has the more dominate swing or personality. Meanwhile im just left to deal with this daily while they argue over who is right.
Fingers crossed and i will update you as to the outcome of the ENT appointment which is 31st march.
Very frustrating- I have TN, Atypical or Type 2, which I believe was caused by ES, although it hasn’t gone completely with surgery. So just because he’s diagnosed your GPN as Atypical, it doesn’t rule out ES…I’m not sure, but I don’t think nerve blocks always work either- surely if they did it would be a standard treatment for everyone?
Don’t get frustrated with yourself though; we all forget things in front of doctors, after all they’re supposed to be the experts!
I hope that your next appt goes better!