Hi, I have been suffering from classic ES symptoms for the last 3 years.
I am planning to see a head and neck surgeon with good experience in ES early in the new year due to delays this year with Covid restrictions.
What I would like to know is if anyone has shoulder pain and/or also radiating pain at the back of the head?
I did not have these symptoms initially but last year I overstretched and felt shoulder pain on the affected side which has now become daily.
Then a few months ago my niece while playing accidentally pushed my head down and I now have pain at the back of my head, where your skull/neck meet again on the affected area. This goes down into my shoulder and feel I have to ‘crack’ my neck on this side. Can this be ES related?
Vkossa - very good question. I have many the same symptoms and it started by falling on my shoulder.
You may want to look into a condition called thoracic outlet syndrome (TOS). I was originally diagnosed with a neurogenic form of TOS. However now with eagles syndrome showing up on CT I am unsure which of my symptoms are from TOS and which are from ES.
Hi bmcdiddie, thank you! Sorry to hear you are also suffering from these symptoms.
I will look into TOS and have also thought about doing some form of investigation for my shoulder, just to make sure there’s nothing else going on separate to ES. I will explore this further now just to know what I am dealing with and appreciate your recommendations.
What I find interesting though is all these additional issues have developed on my symptomatic ES side and not the other side.
It may well be that your ES is the cause of these symptoms, hard to tell. Are you looking into surgery? Also, is there anything you have found to help your shoulder and neck? xx
I’m a little late finding this thread, but I did have pain where my neck & skull meet as part of my ES symptoms. The back of my skull at the neck junction hurt on both sides as I had bilateral ES. The pain went away after my surgeries. I also had collar bone & shoulder pain which I believe came from my accessory nerve being irritated by ES. Those problems also stopped after I had surgery.
Hi Isaiah, thank you for your message and asking about how I’m going.
I will write a separate post soon but still looking for a surgeon which is proving difficult.
I finally found someone who has experience with ES and had to wait a while to travel to see him due to covid. I must say a bit disappointed!
This is because when explaining my pain I noted it was in and around my jaw, neck etc and going into my ‘ears’. He then said he it can’t be ES as ES cannot ever cause ear pain! I thought it could. Also when journaling my symptoms after my appointment I realised my pain was more around my ear area then in it. When I told him this after, he seemed dismissive sticking to his diagnosis of Greater Auricular neuralgia (which I had never heard of) and suggesting he freeze this nerve. I am not comfortable with this at all especially as he did not go into detail about this diagnosis or treatment.
To be honest this has caused me more confusion and frustration as he said my styloids were very long but he was focused on ES not causing ear pain, even when I said it is not in my ear.
I also felt he rushed my appointment and he did not actually examine me at all by pressing around the area. Having said that, I know he has performed successful ES surgery. The problem is there are so few if any surgeons here who know of ES.
Not sure what to do now, but I know I will be getting a second opinion.
Thank you once again and I’m so grateful for this group and your support.
I’m so sorry to read about your bad experience w/ this doctor. It’s so frustrating when doctors dismiss ES based on symptoms they are ignorant of. The pain in the ear area comes from the trigeminal nerve being irritated or compressed by ES. It is a VERY common symptom of ES. There are peer reviewed ES research papers that will confirm this information.Here is a link to a good one I found that verifies ear pain goes w/ ES: 133-SilpiranjanMishra18711876.pdf (1.1 MB)
retrorock and Delia are two members who had surgery in Sydney. I’m not sure if they both saw the same doctor. You can try PMing them to see how they’re doing now & who they saw. Just click on the name as it appears above one of their posts & that will put you to a page where you can PM one or both of them.
So frustrating! I agree probably not a good idea to proceed with freezing this nerve- if you have other ES symptoms, & he’s experienced with ES surgery, could you persuade him to do the surgery anyway & see what happens? No doctors will ever say that all your ES symptoms will go with surgery anyway! Or did you not feel confident with him?
I’ve replied about the ear pain in your other discussion.
I have these symptoms as well. My collar bone feels out of place today. Not every day. But i have pain between my shoulder blades to the right more, every day… that radiates to my shoulder. then up tge back side to right on neck…my neck…radiating pulling pain up back of my skull. Pulling & snapping from ligaments or something at the back of my head when i try and adjust myself into a comfortable position. Or pull my head strsight up to un stuck my neck. I don’t know if the stylohyoids are stuck in something so that my neck feels like it’s forced down?. Which never happens. Only when I see a chiropractor that does a good adjustment but they don’t always work.
And the es dr i went to also dismissed me.
I would like to find an “knows everything about eagles” dr so i stop wasting my time and my life on not fully educated dr’s.
Sorry for your problems - I can totally appreciate your frustration!
I went through an extended facial pain stage a couple of years ago … rather suddenly, I could no longer tolerate wearing my glasses at all. I went on Gabapentin and was diagnosed with Trigeminal Neuralgia. That helped and eventually I was able to wear my glasses again. Then, neck and shoulder pain began along with very “tender” collarbones. They did not hurt all the time but neck and shoulder did. This lasted until after my surgery. Hydrocodone helped a great deal until I discovered that my left styloid was the problem. I still have those pains somewhat but nothing close to what it was before having my left styloid removed.
Have you tried to get an appointment w/ Dr. Damrose at Stanford Medical Ctr in Palo Alto, Dr. Samji in San Jose or Drs. Chhetri or Mendelsohn at UCLA or Dr. Osborne in Los Angeles. I’m not sure where in CA you are but those are your best options here as far as we know. There are other doctors on the list for CA who may be closer to you. We just don’t have as much input about them.
type into YouTube eagle syndrome, you should get a video of dr. ross Hauser explains the ear and jaw pain very well, and yes you get ear pain, ear infections, pain under the ear. in front of the ear as well. all if the TMJ ligament is involved, could be calcified. I have dealt with nothing but ignorant doctors that have little to no education about ES, it can cause many issues. so it seems tare are several common issues that people get, but depending on what it interfering with, depends go the specific issues one can get.
I am going to call dr. Osborne in Southern California and see if they’ll see me. I called dr. Samji in San Jose and they have a whole process to just see him the first time plus $500 cash. Which is nothing compared to what are studs however I did go get Blue Cross Insurance just so I could find a specialist. LOL I don’t think I believe doctor whatever his name was that I saw it at UCLA.