Hi,
After a very long and painful 2 years of different specialists appointments a neurologist is leaning towards diagnosing with me eagles. My ct shows elongated styloids but he wants it reviewed by an ent before confirming diagnosis.
Throughout the two years I have had that many different appointments trying to get to the bottom of my problems. I first started off getting strange heart palpitations (had my heart checked was totally fine), I then started to experience lack of movement in one side of my face and my tongue constantly felt tired. I was also experiencing pain in my face and severe headaches. Mri on the brain n spine revealed 2 discus bulges and a disc protrusion @c3,4 and 5 From a car accident I had about a year before my symptoms started. I was told this was cause of my symptoms and referred to Physio. Fast forward three months and I was experiencing tingling in my tongue, a constant lump in my throat and full pressure in my face. One day I went to a dentist because I had excruciating pain in my jaw and thought maybe I had a tooth infection. That’s was fine but she said maybe I have tmj. The doctors then sent me for X-ray and said my joints were not opening n closing properly n referred me onto a maxifollo. The maxifollo I saw said I had absolutely no problem with my tmj and suggested I was suffering from glossopharyngeal neuralgia. It took me months to find someone who was comfortable in dealing with glossopharyngeal neuralgia. I finally saw dr Aman sabet on the Gold Coast, Australia who is now suggesting I actually have eagles. My ct has revealed elongated styloids but for some reason he wants to have it confirmed by an ent. I have been referred to dr Sam dothwaite and luckily he is seeing me early as next week.
I am just curious if any other members have been through a similar process and if they have any experience with dr dothwaith? I am terrified of Being sent to the wrong person yet again. The last few weeks my pain has becoming so intense in my throat, tongue and face and I’ve noticed that whenever I lie down I’m getting quite dizzy and feeling like my chest has a squeezing feeling so I’m desperate to be sent to the right person who can help me. Previously my pain was solely right sided but in the last couple of weeks I have noticed the same dull jaw pressure that I was feeling in the right side before it got really bad as well as a slight tongue tingle which has me thinking I’m starting to develop symptoms on the other side as well. Is this common??
From the comments I read surgery seems to be the best approach but I’m just curious if anyone has chosen alternative approaches or should I just push for surgery?? I’ve was given endep which I had to stop taking as I was suffering severe side effects and the same side effects has happened with the lyrica I was just put on. I’m just feeling really defeated, anxious and done with this pain.
Hi Jojo1,
First off, your symptoms are definitely those we see w/ ES. It sounds like you probably have it bilaterally w/ the advent of your new symptoms on the left. I posted the info below in another discussion. It should help you understand the need for surgery in order to cure ES:
The symptoms of ES come from irritation of up to six of our cranial nerves which “live” in the neck near the styloid processes. Elongated styloids &/or calcified stylohyoid ligaments can also cause compression of the internal carotid artery or jugular vein when the head is in certain positions (this varies w/ each person). As you can see, it’s removal of the styloid process(es) &/or calcified stylohyoid ligaments that will allow the nerves & vascular tissues to recover thus surgery is the only real cure.
If you want to research which nerves might be causing your symptoms, visit YouTube & watch some of the Two Minute Neuroscience series - specifically the ones that cover the trigeminal, facial, glossopharyngeal, hypoglossal, accessory & vagus nerves. These are the 6 cranial nerves most often affected by ES. Though your symptoms seem mostly like trigeminal nerve irritation, you may still be interested in the effects of dysfunction of the other 5 nerves. It sounds like you have irritation to your facial, trigeminal, vagus, hypoglossal, & glossopharyngeal nerves at the very least. Having your styloids removed should make a big difference as these nerves will be able to recover & regain more normal function. It is important for the styloids to be removed as close to the skull base as possible & if there is calcification on the stylohyoid ligaments, those need to be removed as well.
Here is the link for the doctors’s list for countries outside of the US. These doctors have either diagnosed or done ES surgery for some of our members in Australia:
https://forum.livingwitheagle.org/t/doctors-familiar-with-es-countries-outside-us-2019/4753
Using the magnifying glass icon above, you can search the name of a given doctor to see posts where that doctor is mentioned.
Finally, we have been given the name of a doctor in Perth who is not on the list but will be added pending the surgical outcome for our member Simon. If you want to travel that far, I can give you it to you. The doctor Simon is seeing sounds wonderful.
Jojo1,
I don’t have more to add to Isaiah’s excellent info except to send good wishes. What a journey you have been on. It certainly sounds like an ES diagnosis might fit and be a parsimonious explanation for your many and varied symptoms. I hope you find the right doctor soon!
Again, can’t add any more, but will privately message you about the doctor you’ve been referred to.
Thank you for your support. My ct definitely shows elongated styloids on both sides and nureologist suggested Es which is something I hadn’t heard of until he mentioned it. I’m not sure why he wants it confirmed by an Ent other than to explore potential surgery options. He said he didn’t want to make that call without the opinion of the Ent due to its rareness. I can’t helping thinking is just another small roadblock put up to make my journey just that little bit more drawn out but at the end of the day I can’t complain. I’ve read people have waited way longer than my two years for a diagnosis . At this stage I’m just happy to have someone find out the exact cause of my issues and not just put me in the crazy box hahaha. My doctor has never heard of ES and I Am certain he thought I was beIng a over dramatic hypochondriac.