Firstly I just want to express my profound gratitude to all of those who moderate and post on this forum. I’ve been lurking and combing through posts for the last few days.
Based on the invaluable knowledge shared by other members, I’ve contacted Dr. Joshua Schindler’s staff at OHSH Voice and Swallowing Clinic to be evaluated for surgery. My PCP is helping with the referral process, although a physician’s referral isn’t strictly necessary.
My local ENT manually palpated my styloid thru the tonsilar fossa last Thursday. That, along with what she determined to be ossification of my stylohyoid ligament on my CT scan with contrast led to my dx. Unfortunately, it seems that palpation greatly exacerbated some of my symptoms ( stabbing ear pains, severe headache, and today, near-constant vertigo). I’m hoping that subsides a bit soon. Yikes!
I was reaching out today to see if any fellow members cared to offer input on my choice of potential surgeon. I’m kind of going with my gut in choosing Dr S over the other two from the list.
At this point, I have fairly little knowledge of the anatomical particulars of my case, and my ENT didn’t seem AT ALL inclined to pursue it further. She told me my ligament was ossified, and it appeared that I had Eagle’s Syndrome. Her only advice was basically don’t piss it off, haha! As in don’t rub it, push on it, massage it, etc. Valid, I’m sure; but not super helpful.
I am armed with my CT scan on disc and MODA insurance.
Hi & welcome to the site cancar!
Ouch- palpating the styloid like that probably did irritate things- hope it settles down soon!
I’ve used the search function to look up Dr Schindler, but can’t find any mention of him in the discussions. If no-one chips in with info about him, I’d suggest asking:
*Does he do external or intra-oral surgery- external is better as the doctors can see the anatomy better, & can remove more of the styloid process, & there’s less risk of infection, but members have had successful surgeries with intraoral too.
*How much does he remove- some doctors only shorten the styloid a bit, it’s best to remove it as far back to skull base as possible for best results. The tip should be smoothed off & all the pieces removed.
*You need to check if your styloid process is elongated as well as the calcification on your ligament, & if both will be removed; if the ligament is calcified as well as the styloid elongated then both need to be tackled.
*Does he monitor the nerves during surgery- most doctors do to make sure that they’re not under too much stress.
*How many surgeries has he performed, & how did patients get on afterwards.
If you ask questions then you can get a feel for him, & whether you feel confident in his approach.
That’s all I can think of for now, hope it helps!
Good advice, thank you. I want aaalll that junk out via external route, in an ideal world. Cute profile pic BTW !
Unfortunately, I think Dr. Patel & Dr. Dierks both do intraoral surgery so Dr. Schindler may be your best bet. If he only does intraoral, & you can travel out of state, Dr. Samji in San Jose, CA, or Dr. Damrose in Palo Alto, CA, are both excellent ES surgeons & both remove the styloids via external surgery.
Yes. I look forward to learning more. This seems like FAR too complicated of a condition to operate on without visibility of all the anatomy adjacent to the ligaments. I’m super tempted to do the 3D visualization of my scan, for my own curiosity’s sake; but I feel like a lot of Drs seem annoyed with patients who show up with too many ideas about their diagnosis. I work in animal health and have some education in human anatomy, medical terminology, and pathology. I probably know just enough to be dangerous, haha!
I feel acutely conscious of not overwhelming anyone with descriptions of all the weird, troubling symptoms. I am so, so grateful that I’ve hopefully avoided tripping down the diagnostic rabbit hole of chasing symptoms with this. You guys are doing the Lord’s work here. I really can’t thank you enough.
cancar,
You’ve hit the nail on the head as far as this being too complicated of a condition to operate w/o full visibility of the internal neck, yet many of our members have had successful intraoral surgeries. Also, not overwhelming a doctor by listing every last symptom you have is a good idea. Too much discussion about odd symptoms & asserting your knowledge of ES can be off-putting for some doctors. Others appreciate the time you’ve put in to educate yourself. Better to start by playing a little ignorant & hearing what the doctor has to say then add your knowledge discreetly by asking pointed questions.
There would be nothing wrong with you creating 3D images from your CT scan just for your own information. You don’t have to share them or even that you created them with the doctor. The radiology lab that did my CT scan actually included four 3D images so my diagnosing doctor was able to show me what the CT slices indicated. It was very helpful.
We are so happy to be here for you. I feel moderating on this forum has been a gift God has provided for me. I have learned the reason I had ES - so I could help others understand this oddball syndrome & help them along their paths to healing from it. 
welcome cancar,
I have a few suggestions…or additions. Make sure to ask the potential surgeon how many of these types of procedures they have done and how often.
Having moved up the coast from CA to Oregon, then Washington. Don’t look to the north for a good ES surgeon. I was not impressed with the group in the Seattle area and they were condescending.
I didn’t consider OSHU as I had already had a negative experience there (not ENT group). I ended up with Dr. S who has taken out both sides and had a good experience. You can send him your disk and he will review to see if you are eligible for surgery in his practice. He then can do a video consult and I think now charges $550 out of pocket if your insurance does not have him in-network. He usually reads them within 10 days and you get a consult within 2 weeks. I hear there is a good doc at UCLA as well. Mendleson? Our doctor list and threads usually indicate level of patient satisfaction.
Before checking out of state, you may want to check and see whether MODA allows you to go out of the state. Unless it has changed, I recall it was somewhat limiting.
As for pissing the area off…injections of steroids in the area or a good oral round of prednisone might help it calm down. I got injections along with nerve blocks in the area to make it to surgery. It is hard to find a doc who specializes in these type of injections in the neck/ear area. Mine was a neurologist. I also had rounds of botox too but do not suggest that pre-surgery. I tried some acupuncture too. Most of the time it was helpful but one time, it made it angry and I backed off for awhile. Hope that helps
Sometimes when you get these pain flairs, your muscles tighten up and clamp down even more causing vicious pain cycles.
Thank you for your kind words 
Love your profile pic too…mine is a rescue horse my boys sponsored for me as a mother’s day gift, not my own unfortunately!
Thanks for your input! Dr. Schindler seems to have an excellent reputation and the two staff members of the OHSU clinic that I’ve spoken to have been very helpful and professional. I’m so sorry about your negative experience there but glad to hear of your successful treatment with Dr. S. I do think steroids would be helpful right now to reduce some of the inflammation, but neither my diagnosing ENT nor my PCP have offered that. I’m frankly hesitant to involve them any further in my treatment since this case seems out of their realm and comfort level. I honestly felt like the ENT wanted to just get me out of her office. In all fairness, she is taking maternity leave in several days and I am grateful that she diagnosed me at all, but that only came after I pressed her when she told me the CT scan showed no abnormality. My PCP was concerned about my heart and wanted to order an EKG, so it’s not like he doesn’t care but it feels like we could very easily get in the weeds here, haha! I promised myself that if this proved to be anything more complicated than a simple infection, I would seek treatment out of my rural area. PDX is a good six hours away, but I have places to stay up there. I am trying to keep my mind, and options open at this point though.
I lived out in eastern Oregon myself and sought treatment in PDX too. Luckily I knew enough about my medical condition to manage it with a local doc after I fired OSHU people. LOL. They do have a good reputation there. Like anywhere, depends on the department and the doctor group.
Funny thing, I was living in eastern oregon when I had my first ES pain flair (2015). I went to an ENT who did an MRI which showed nothing and was blown off. As the pain worsened - it was excruiating, I saw a neck and spine doctor. He never figured out the Eagles at the time but he did give me an RX for oral dexamethazone (steroid). Within 24 hours, the pain began to lesson and that pain flair subsided but I had several flairs after that and the pain shifted to the other side. It took me 5 years and alot of pain to get Eagles diagnosis.
Yes, living in a rural area limits the care. On the good side, at least it is summer and the trek to PDX is easier…I hope you dont have to wait long to get into see Dr. Schindler.
cancar,
I can’t remember if I’ve told you this, but heart symptoms are somewhat common w/ ES as they stem from vagus nerve irritation. The vagus nerve is the most extensive & “invasive” of our cranial nerves & affects MANY body functions. I had heart palpitations & blood pressure drops during exercise that were pretty scary. I was in & out of the cardiology office getting a stress test & echocardiogram which were all perfect. The heart & bp problems stopped after my styloids were removed.
BTW, I grew up w/ a horse loving mom & have scooped my share of manure & bucked more hay bales than I care to remember! Did a little riding in the mix, too. 
Sorry you have a long drive to see Dr. Schindler but hopefully it will be a very fruitful visit for you.