The radiology report states Eagle Syndrome was found. I will see my doctor next week and she has already referred me to an Ear, Nose, Throat doctor for the week after. It has taken years to get this far. My concern is that none of the doctors have experience with ES and there seems to be a lack of resources even for them. We are going in blind together and that does not inspire confidence. What can I ask, or should I ask, to know if they are able to give good treatment options? Not sure I am articulating this well, sorry for that. I already have a rare medical condition and have way too much experience with having wrong treatments. The known doctors that treat ES in my state are too far away and I am unable to travel for other medical reasons. If there are guidelines or information that would help, please let me know?!
Hi Carlita,
Welcome to our forum. I’m glad you’ve joined us! Questions to ask the ENT are
•How many ES surgeries has the doctor done? (Many - is the answer you want as that indicates experience)
•What surgical approach do you use i.e. transcervical (through the neck) or intraoral (through the throat & often requires tonsil removal). We much perfer the transcervical approach on this forum because nerves are monitored, the styloid can be cut back close to the skull base (i.e. nearly total removal) & stylohyoid ligaments if calcified can be removed. Intraoral surgery typically only allows for shortening of the styloid which often doesn’t help improve symptoms & stylohyoid ligaments can’t be easily accessed?
•Unilateral or Bilateral surgery i.e. will the doctor remove only one styloid at a time or both at once (if you have bilateral elongation)?
•Is a drain put in your neck during surgery & removed post op or will the doctor Rx anything to help w/ post op swelling such as Prednisone. (Ice is also a wonderful help post op)?
•Will the surgery be outpatient or inpatient (i.e. an overnight stay at the hospital)?
•What is the expected recovery time? (4-12 mos is the correct answer. Two weeks is not!)
•What percentage of your ES patients have good recovery from surgery?
These are some basic questions, but I feel like maybe I’ve forgotten some others to ask. I expect some of our members will contribute their ideas. 
That’s difficult if you can’t travel far to see an experienced doctor; unfortunately ES is barely mentioned in medical school because it’s supposedly so rare, & many doctors are skeptical about it, so you may well find that the ENT doctor you’re refereed to is in that camp! If you’re able, you could have a look through some of the research papers linked on here- there are some links to papers in the Newbies Guide Section:
ES Information: Background, Anatomy, Styloid Length, Angulation, Classic and Vascular - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
And we also have a section with more research papers:
Latest General/Research Papers topics - Living with Eagle
It might be worth printing off some which are relevant to your symptoms or your radiology report to take with you to show the doctor. Doesn’t always help, but some doctors have been open to learning more about it!
There are suggestions for meds/ tips to help with pain relief in the Newbies Guide Section, but the only real cure for ES is surgery. Some members have been able to manage their symptoms with meds etc & haven’t opted for surgery as it does have risks. Here’s a link to the section:
ES Information- Treatment: Pain Relief - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
If you find the ENT either isn’t helpful or isn’t confident with operating, & you can’t travel, if there’s a head & neck cancer or vascular surgeon in your area they might be worth seeing, as often they have to remove the styloids to access the cancer, so would have experience.
I hope this helps!
Thank you for the information. I have been reading as much as I can. Had to go back and check the radiology report to see what it said - Elongated styloid processes seen bilaterally, more than 5 cm in length. Aside from that it just says due to ES. Until I read your comment, I didn’t really understand how and why that mattered.
Thank you so much. I already see a hematologist at the cancer center due to the myeloproliferative disorder. I know they do have a doctor that does the head and neck care! Because of the MPD, surgery of any kind is already a problem. I was desperately hoping there was a treatment other than that. I like to find a bright side, I guess in this case it is that I will probably be referred right back to the CC. I already have an established relationship with the office staff and my doctor there is the one that encouraged me to keep trying to find answers and not give up. I think I understand why doctors do not seem to know what to do, my GP at least. Thank you for shedding more light on that. I was frustrated that even with a diagnosis, the doctor didn’t prescribe anything or suggest any kind of pain management. I did call and ask if they could do anything at all to help until I see them on the 8th. They gave me Celecoxib Friday, the doses last until the 7th. I cannot tell yet if it helps, maybe it takes a while to reduce the inflammation? I have been using ice on my head and neck all of my life, so I have lots of packs in the freezer. I didn’t know to put it on my throat until I read more here about it. Putting it on the side and around the throat area has made it easier to manage, I’m so thankful for that knowledge. Sorry, this got so long winded.
Welcome to the forum @Carlita 
@ Thank you! So glad to have found you folks.
@Carlita - Your styloids are VERY long so there isn’t likely any therapy short of removing them that will help relieve your symptoms. Celecoxib is an NSAID (which you likely know) & isn’t the best approach for dealing with your symptoms which are caused by nerve pain. NSAIDs don’t typically do much to reduce nerve pain. What you need is a nerve pain medication. These are either anti-depressants or anti-seizure meds such as Gabapentin, Amitriptyline, or Carbamazepine to name a few. Nerve pain meds can take several weeks to a month to begin helping relieve pain & sometimes the dosage needs to be tweaked which can cause them to take a bit longer to be optimally affective. Since your appt. is this coming week, just stick w/ the Celecoxib for now & discuss nerve pain meds at your appointment.
Thank you, @Isaiah_40_31 . Knowing this will help a lot at the appointments, both with the GP and the ENT. I understand about meds not being a long-term answer. I’ve never had a doctor here prescribe any kind of med for pain other than Fluticasone(?the nose spray) and the Celecoxib. Funny they prescribe that nose spray even when you tell them it didn’t fix it. I have a collection of it in my nightstand now. 
Glad you told me it may take time for any meds to work. Thank you for that!