Not yet diagnosed

I have not been diagnosed but expect to be on October 25. My symptoms seem mild compared to others on the site but they are irritating. I have a high pain tolerance which is both blessing and a curse. I spent the summer thinking I had a neck tumor or something and was ignoring going to the ENT. I wanted to know and did not want to know so I just ignored. Then my Dentist said you might have Eagle Syndrome and after spending the entire day not working and getting diagnosed by Dr Google I was actually relieved that I do not have a neck tumor. I am taking that as a blessing. I made an appointment with my ENT and as soon as he saw the dental xrays ordered a CT Scan with contrast. They called the next day to let me know they had already started to evaluate my scan and to make sure that I was still coming in. Regardless if he becomes the treating Dr or not, I feel like he is taking this seriously. My left is 4.3 cm and my right is 4.7 cm. I feel symptoms on the left some of which I see on the list and others not.

Vertigo 4X
non-vertigo dizziness (short lived)

Left Side
Something poking me in back of throat
Sensation of something pushing /pressure towards throat just below along jaw bone
Ear feeling full
Below ear next to jaw the feeling some people get when eating sour food but super intense at times…to put it mildly
Pressure below ear next to jaw
Short live tinnitus
Weird slightly numb sensation back left corner of tongue
Face slightly tingly along edge of face

Right Ear
Estuation tub dysfunction (plugged ear for several years) Happened just before my first Vertigo
Short lived tinnitus

Presuming I get diagnosed with ES and I am not in horrible pain (it is super irritating and feel soon it will cause anxiety) wouldn’t it be better to get it removed before the horrible pain sets in? Would it be easier to maneuver around the nerves and arteries and have better outcome if you were not as inflamed or have nerve damage? I have heard about irreversible nerve damage because it was impinged to long. It seems that most people wait until pain is severe or they went undiagnosed for quite a while. I don’t know and am putting it out there.

Also, any key questions I should ask on my first visit. I have perused the newbie section, looked at various posts and scoured the internet. I don’t want to miss this opportunity to get more info from the Dr.

BTW-any of you have friends that when you told them about this crazy rare disorder you might have (its a lot to take in by yourself) ask you " did you have symptoms before or after you read about them" really!!!

I understand this no one here is a medical Dr

I think pretty much all your symptoms can be down to ES- unfortunately we can’t say with some symptoms until after surgery & whether they go or not…
Having surgery is a dilemma, weighing up the pros & cons, & is different for everyone. There are risks of nerve damage with surgery, it has occasionally happened (facial numbness, crooked smile, shoulder & arm weakness have all been reported by members very occasionally after surgery), so you do need to bear that in mind. But as you say, the longer you put off surgery it can also cause more damage…so only you can make this decision. I could live with the pain so didn’t pursue surgery for a year or 2, but it did worsen & I started to get vascular symptoms too, so that made my mind up about pushing to get it done. I do still have some nerve pain, 3 years later- I don’t know if it’s definitely down to damage caused by the styloids, or also caused by some other neck problems I have.
Questions to ask the doctor are do they do external or intra-oral surgery? (info in the Newbies Guide about pros & cons of those), whether they remove all of the styloid, if not how much they’ll leave in, & whether they’ll smooth over the end. Will they remove the ligaments as well if yours are calcified (strangely some doctors do one & not the other, even if there’s calcification or styloids are long!) You can ask if they monitor the nerves during surgery, about post-op swelling (some doctors prescribe steroids for that, some put a drain in, some do neither) Also ask about the risks- just to judge if they’re honest about them, so you can see how much you trust the doctor, same with asking how many surgeries they’ve performed & success rates!
I didn’t tell too many people about the ES (standard question is ‘are you going to grow wings?’ when hearing it’s called Eagles’ Syndrome!), but not all family were that supportive about my decision to have surgery regardless of the risks- they couldn’t understand how bad I was feeling & how scared I was with the vascular symptoms, & I didn’t want to worry them by going into detail!
Sorry your friends aren’t very helpful… it is surprising when you learn more about it how many symptoms you can probably attribute to ES, a lot of people say they’ve had symptoms for years but didn’t realise!
Good luck with your appt. & let us know how you get on…

Hi Jenawoo,

Jules pretty well covered all your questions & concerns, but I do want to comment on one symptom you mentioned:

This sounds like First Bite Syndrome which is sometimes a repercussion of neck surgeries in the area where the ES surgery is done. I can’t remember if anyone on the forum has had FBS prior to surgery but because the angle & thickness of the styloid as well as its length can cause problems, it seems possible FBS could be an ES symptom. Here is a quickie Google explanation of FBS:
First bite syndrome is characterized as pain in the parotid (salivary gland) gland or lower jaw area (mandibular region) at the first bite and, subsequently improves with each bite . The cause is unclear but, may be related to nerve impairment from surgery or other conditions.”

In some cases, post op FBS goes away completely & in others the symptoms reduce over time but it never goes away completely. I have FBS that has stuck with me from my first ES surgery 4 years ago, but it has become more tolerable as time has passed. Surgery was the right choice for me & gave me my life back. Having surgery sooner than later would also be my choice. As a matter of fact it’s what I did. :smile:

Please let us know how your doctor appt. goes. I’m glad you & spinsic can compare notes. It’s always great to find someone closer to home who understands what you’re going through first hand.

Hi Jenawoo, just adding to that first bite syndrome. I was finally diagnosed in April of this year with eagle. I have had it for more than 20 years and just bounced around like a pinball from one doc and test to another doc and scans! MANY dentists as well. One of the long term symptoms I have had was with my right parotid gland. For some reason it activated quite often to “spit” that saliva into my mouth but would back up on me and cause quite a bit of pain not to mention the walnut size lump that formed just under my ear. I would have to put a warm compress on the lump and massage/milk it to get the saliva flowing again. This has gone on for years and nothing ever found to be causing it despite all the scans and tests!!! Now my right parotid gland is mostly atrophied (turned to fat) and they haven’t known why. This is all being done by the way at the ENT who finally just diagnosed the eagle. Since that time I have seen several doctors & also a dentist who know very little if anything about this horrible affliction. I am determined to find someone I trust to do my surgery as soon as possible. It’s the getting there that seems to be the problem. I have soooooo many symptoms other than the parotid gland issue, just wanted to pipe up and say YES, you can have issues with that FBS feeling prior to surgery.

Thanks everyone for your replies. Hope he will diagnose which will allow me to get other second opinions. Sounds like Dr Samji is the guy for that. I will update on Thursday