ES and doctors

Hi, I was diagnosed with Eagle’s syndrome in September by my ENT. CT done then told surgery wasn’t an option because, according to my ENT, it’s not done for Eagle’s Syndrome until you can’t bare your symptoms anymore and everything else has been done. I then requested a referral to the University of MN and saw Dr. Ondrey, who is listed in the doctors info on this site. Dr. Ondrey confirmed that both styloid processes are 4 cm even though my symptoms are only on the left. During exam he was able to see and palpate my styloid process on the left. I have on and off ear, jaw, throat and face pain. I also have constant left neck, shoulder and back pain which is laughed off when brought up that I think it could be related to the Eagle’s Syndrome. Due to the fact that when Dr. Ondrey was pressing on the left styloid and it did not cause more pain he does not want to due surgery and told me I could see another doctor for another opinion.
I’m posting this out of frustration. I’ve read other’s posts and know that it could take several doctors to see you before something is done. I live in Wisconsin and see there is Dr. Bove in Chicago who has seen several of the members but am concerned I’ll go through the steps to see him and get the same answers. I’m willing to travel in order to see someone who can take my symptoms seriously. Does anyone know who would be the best doctor to try next? Or any advice?
Thank you!!

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I do not have any tips when it comes to doctors, I live in Europe.
But I also have neck, shoulder and back pain on one side, and are sorry to hear that the doctor laughed it of.
Both mine are 4 cm and most symptoms are on right side. Im having surgery next week.
Dont give up untill you find a doctor that will operate you, Im sure someone in this forum can help.

Hi JenClark!

Doctors can be so ignorant. I’ve often thought that the doctors who are dismissive of ES & the many symptoms it can cause should be so unfortunate as to suffer from ES at some point so they can appreciate what we go through :rage: . (Sorry, that’s my vindictive nature coming through. In actuality, I wouldn’t wish ES on anyone…:slightly_smiling_face:).

I’m so sorry for your experience. Your left neck/shoulder, ear jaw & throat pain is likely being caused by irritation of various cranial nerves that run through that area. These are common ES symptoms & have been documented as such. Pressing on the styloid will not necessarily intensify symptoms thus it’s not the definitive way to determine whether or not surgery is needed.

I don’t know how far you’re willing to travel, but Dr. Cognetti in Philadelphia, PA, & Dr. Samji in San Jose, CA, are likely the 2 most experienced ES surgeons on the US ES Doctors’ List. Both do phone consults for a fee. If you want a second opinion w/o having to travel, you could arrange a phone consult w/ one or the other. Either one would need a copy of your CT scans & the written diagnostic report. I imagine that Dr. Bove might do a phone consult as well. It’s worth it to call & find out before traveling that far.

Here’s some good advice that was given on this forum recently - Doctors tend to “eye roll” at the mention of more extreme ES symptoms (which could include your shoulder pain). Keep your symptom focus on the more general ES symptoms i.e. throat, neck, & ear during an appointment. Things like vertigo & tinnitus though very common w/ ES will almost always be debated as unrelated as will gastrointestinal symptoms (which are also not uncommon). Taking research articles with you to your appointment(s) (many links are available in the Newbies’ Guide here or you can search online) that list your symptoms as being a part of ES can also strengthen your case for the need for surgery.

I’m sorry to hear you have Crohn’s Disease. That is a huge challenge in itself. I hope you’re able to quickly find a good ES surgeon who will help you deal w/ your ES.

May 2019 be a year of healing for you! Happy New Year!!


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Thank you! I’m glad to hear those two doctors will do a phone consult. It’s already so much just trying to get a referral to a new doctor let alone the travel and time off work. At least I have some direction and hopefully someone will listen. :grinning:

I was fobbed off my the first consultant I saw & told exactly the same as you, that surgery would only be done if I couldn’t stand the pain any more- luckily I was able to find an experienced UK surgeon on here & had both sides done successfully, so keep trying! Dr Bove has done quite a few surgeries, it might be worth asking about a phone consult with him, but as Isaiahsays the other 2 doctors are very experienced. Good luck!

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