Hello everyone! Thank you for allowing me into your group, I am so happy to be here and to maybe, finally, get some relief and answers as to my chronic jaw and neck pain!
I recently changed to a new dentist in town, and he took my first panoramic xray at the age of 29. I have been suffering with chronic pain for the past ten years and noticed something off about my xray. The tech pointed out my styloids and said “See this? Those are ligaments you aren’t supposed to see on an xray”. She didn’t really say anything more, and neither did the doctor, but it instantly made me wonder what those were.
Much research later…and here I am! I have attached my panoramic xray picture below.
A little history if anyone else can relate:
In 2009, I began to have chronic migraines, almost every other day when I began college. It was debillitating and I was put on a medication called Topomax. This medication did help a bit, but the migraines still continues less often. Later that year, I had my wisdom teeth removed. The migraines slowed down, but instead I was replaced with pain in my jaw, clicking and tightness, which was quickly pushed off as TMJ. Since then, I have been using mouthguards for constant bruxism and grinding, and the pain has spread over ten years to my entire neck, face, shoulders and upper back. My muscles are so tight that they have pulled my cervical spine out of alignment.
I have seen multiple doctors, rheumatologists, neurologists, musculoskeletal specialists, I’ve had PT multiple times, seen a chiropractor. All go back to “fibromyalgia” because they can never find the source. I’ve been dealing with constant headache and muscle pain for ten years, and I refuse to be on any heavy medications.
Since researching Eagle’s syndrome, I have realized a few symptoms I didn’t notice as well as before. I do have difficulty talking, my mouth often feels full and like I have to swallow a lot. I assumed it was because my jaw joint is tight, now I’m wondering if this is a symptom. Same with having difficulty opening my mouth, yawning, etc. It’s painful, the muscles and joints hurt to stretch.
This past March, I was in the hospital with stroke-like symptoms. I lost feeling in the right side of my face and down my arm. They put me through an MRI, CT scan and a heart test. All came back negative for stroke and they pushed it off as an optical migraine (which I had never had before). Now I see that stroke like symptoms are a possible part of Eagle’s syndrome.
Any help or advice you can all give me would be SO much appreciated. I am located in CT, it seems as though I would be travelling to Boston, MA to get treatment with a doctor many of you have had successful surgeries with, if my PCP refers me. THANK YOU ALL SO MUCH!
I uploaded the picture below of my panoramic xray. Could you take a look? Thank you all!
Hi Akucrisp,
Your story is sadly similar to what many of our members have experienced. The worst case is when a person w/ ES gets diagnosed as being a hypochondriac & sent to a psychiatrist. Too many doctors don’t understand or don’t think about the varied & far reaching pain/symptoms the cranial nerves can cause when they’re irritated. It’s because of the diversity of symptoms ES can cause that it is hard to diagnose. In your case, it sounds like you probably have vascular ES (migraines & stroke-like symptoms). That means that either your internal carotid artery or internal jugular vein(s) is/are being compressed by your elongated styloid(s) &/or calcified stylohyoid ligament(s) when your head/neck is in certain positions. Your symptoms are all ones we’ve seen w/ ES. Your neck & shoulders are innervated by the accessory nerve, jaw, mouth & throat - trigeminal, facial, glossopharyngeal & vagus nerve. Swallowing is hypoglossal & glossopharyngeal. Some people have excess saliva while others have too little along w/ dry eyes. This is indeed a crazy syndrome for the problems it can cause!
You mentioned seeing a doctor in Boston. Is that Dr. Annino? He’s done successful surgeries for several of our members & comes w/ good recommendations.
I’m sorry you’re having trouble w/ uploading your images. Are you trying to upload them from a file on your computer desktop? If so, I can reach out to our ModSupport team to see what the problem might be.
Welcome Aku,
Unfortunately your years of of migraines, teeth issues,tmj,etc read like many of us. Ive actually spent decades going through the same that started with headaches and neck issues that started in my early 20’s. I too have problems with cervical spine being out of alignment. Tight muscles, exactly the same as you. Told I had fibromyalgia. TMJ almost fit your story to a tee.
What I have learned that I also have ehlers danlos hypermobility (EDS) that can also present as fibromyalgia. I get constant massage by PT and try to limit chiropractic as I was told I was over-adjusted and my ligaments could hold my body (spine and neck) in place very well. I now know its the hypermobility that contributes to my inability to hold spine and neck in place.
Recently I have been getting botox injections in my jaw, neck and temples to try and get those tight muscles released. I had ES surgery on one side in April and going in to do the 2nd side in early December. My surgeon warned that the TMJ could kick up after surgery and it did. Luckily I had a neurologist on board doing these injections before surgery and I am making progress on finally getting things all calmed down.
You are very lucky that dentist picked up on this and alerted you. I am glad that you will travel to see a specialist to get diagnosis. There is light at the end of the tunnel and you are in the right place.
Thank you for your help, I was able to upload my picture below! I will go back and edit my original post.
The excessive salivation you mentioned…I didn’t even know that was a symptom. I’ve been having that for years. No dry eye luckily…
It’s so interesting you say that…I had a physical therapist once say I have hypermobility in my joints and may be pulling on my joints and muscles. I did notice that seeing a chiropractor brought temporary relief, but then brought more pain later on…
I am worried about my TMJ being further damaged by surgery…and I always wonder if my TMJ caused these eagle syndome symptoms, or vice versa. My most “tender” painful area is right under my jaw on both sides…which really makes me wonder about the styloids pressing on my jaw/ligaments, but I’m no expert.
It’s so good to hear from others who understand my battle and my chronic pain and to know I’m not alone. I really hope that if I do get surgery, if this IS Eagle Syndrome, then I can finally FINALLY get relief. I remember when I was in my early twenties, I remember what it felt like to be ‘normal’, now I no longer remember what it felt like to not be in constant pain…
I had a sneaking suspicion about the EDS as your symptoms mirror mine. Its important to look further into the EDS especially for how young you are. I wish I had known back then what I was dealing with so I could take steps to protect my joints more and avoid repetitive motions that caused repeated ligament injuries. There is a very high rate of TMJ joint disorders with Ehlers Danlos as well as neck instability. Often chiropractic adjustments didnt hold very long and temporary relief. My neck, shoulders and sides of head are super tight. I have found getting massage and cranial-sacral manipulation to be helpful. Im still working on the botox thing. I just made appt with a new TMJ specialist recommended by someone here on the list. I clench alot especially under stress. There is a couple good books and one on PT for those with EDS that might help if you do in fact have EDS.
Check this out: https://www.ehlers-danlos.com/what-is-eds/
As for Eagles, I dont think the TMJ causes it, I think the TMJ does complicate it though since we have so many ligaments and nerves that feed the neck, jaw and ears. My sensitive spots were under jaw line below the ear. I would get shooting pain starting in my mid-neck up to my ear. The one bump on left side was the worst and sensitive to the touch. After surgery that sensitive bump was gone? Go figure.Ive asked docs what the bump was and they would just shrug and say they didnt know.
The surgery did not damage my TMJ, I just think the surgery itself and the pulling of the nerves that feed up to that area get tweaked out from the surgery and can take along time to calm down. Everyone reacts differently. I would imagine it depends on how bad your TMJ is too. I delayed my 2nd side surgery because of it. I also have been aggressive in getting injections, massage and acupuncture after surgery and had all those providers in place in advance if I needed them. Hope that helps.
Hi Akucrisp,
You’re most welcome for the help. Your styloids do look long, the left one especially. If I were a doctor, I’d diagnose you w/ ES. It is common to have vocal challenges w/ ES as the vagus nerve is often irritated by elongated styloids & it innervates the vocal cords. I do understand yours is more related to how far you can open your mouth due to jaw joint stiffness. Jaw stiffness or pain are certainly common ES symptoms though jaw stiffness more often occurs after surgery, but it’s temporary. I think you would get some good symptoms relief if you had your styloids removed, but that’s just my non-professional two cents.
I just looked back today at some X-rays I had taken by my chiropractor back in 2015 and guess what I found? My styloids again! They’ve been calcified for so long?
Thank you, Snapple!! What great resources you have: it sounds like we’ve both been through similar pains and symptoms. I truly appreciate the direction you all are giving me!!
Thank you! I see my PCP on the 18th to talk to him about getting the referral to the doctor mentioned previously up in Boston at Brigham and Women’s Hospital. I will keep you all updated with what they say. Hopefully I get some help, and not the run around I’ve gotten for 10 years…
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Your welcome! I do recommend an excellent book on EDS and it is a very easy read. It was like reading a book about my life with all these weird constellation of symptoms. It’s called Joint Hypermobility Handbook by Brad Tinker. Its about a $16 book and well worth it.
There is a customized PT program designed for EDS. https://www.muldowneypt.com/ehlers-danlos-syndrome-information/
Although I have not yet been able to do it because of COVID and between work, the one thing that sticks out I know I need to do and recommended by several osteopaths too is Pilates. I was advised not to do mat pilates and only the machines and focus on core strengths. Unfortunately, I think ligament tears in wrist that required surgery were from yoga and doing down dogs. I now stay away from any exercise that has any wrist involvement. Good luck on dealing with the ES
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