Hello! I found this page months ago from researching my symptoms. It has been a long and painful one. Around Christmas 2018, starting having head pain (midline and right side), outerbody feeling, and very stiff neck (loss of range of motion). Went to my general practitioner- ordered MRI of brain, x- ray of neck, and 6 weeks physical therapy. The neurologist thought migraines ( 1 white matter lesion typical of migraines per MRI report) I did a number of tests, including MRI of neck, MRA of neck and brain, and other tests done in office, all normal. My right ear had severe pain and fullness, so referred to ENT, who thought I had TMJ ( I wear a night guard for clenching and have been for many years) but gave me no solutions. The PT helped improved my range of motion, but I had severe right jaw pain, ear pain, sinus pain, neck pain, and swallowing pain which will not go away. When I turn my head to the right I feel pain that shoots up my neck and head. I have been to ophthalmologist and my eyes were ok, right a little dry, it said it might be migraine. Then my neurologist sent me to another neurologist thinking I might have cervical dystonia, to do Botox for that and TMJ. Went to that appointment and the doctor did nothing since he doesn’t believe I have cervical dystonia. Went to an oral surgeon in the mean time bc of pain, and he believed it was a neck problem ( did an X-ray and said no on TMJ), so sent me to a pain specialist, who gave me injections in my neck of steroids and boy had the pain gotten much worse! He thought I might have Eagle Syndrome, so sent me to another ENT. He said I had a deviated septum, but says nothing about all my pain. He sent me to do a CT scan to get a better view of styloid process (did a CT scan of neck prior to pain specialist and showed nothing) but he tells me it is rare, it I don’t know what or where to go. I am going in circles of referrals and no answers. My symptoms seem to match a lot on here, but sometimes feel like they change or change in severity.
I’ve had these symptoms and everything is on right side:
Sinus pain (with congestion), neck pain, eye pain, shoulder pain, arm pain, dizziness, some tremors,very bad jaw pain, pain in swallowing as if something in throat, pain when turning my head, top of head pain, the list goes on.
Sorry for long post, I have attached the Xray the oral surgeon took until I can get results. I know everyone is not a doctor, but would like your opinion. Right side is where my pain is, can you just have pain if it is calcified and not long? Thank you all!
Hi Ahenry,
Sorry to here your story and struggle. Your story seems familiar. But im telling you now nothing to fear. It seems youre having ES probably combination of Vascular and Classic signs. Youre panoramic xray show some elongated styloid. But inorder to fully see the whole picture do a CT of the neck with or without contrast is fine, the only difference is that with contrast it show some vascular impingement. I know it affect your quality of life but theres always a cure or can give your life back atleast. Remember this, everybody live with pain in this world not only physically but emotionally and spiritually. And always listen to your body and advocate for yourself. Let me know if you uave question.
Thank you so much for a response. I have been following this site for about a month now and it is so great the amount of support and information everyone is willing to share. I finally go in for another CT on Friday. I thought the right side on the Xray showed some thickening. I also read somewhere that your styloid shouldn’t show up unless it is elongated, but not sure if that is true. I really appreciate your response and others who might respond to this post. I will keep an update on the results. Thank you again
Hi ahenry,
Great! Its also going to reveal in the CT either you have elongated styloid or your stylohyoid ligament are calcified or ossified which is disturbing the surrounding vasculature and nerve environment which cause the symptoms. This disease are tricky it give vague symptoms and the doctor might give a thousand differential diagnoses and the ES is the least to be diagnose. Just always remember that always be grateful everyday. Theres a lot of people which are worst than us that suffer multiple comorbidity and having pain in all aspect but still they are moving forward. So my motto here “Get it done and move forward”.!
The right side in the image, your left does look elongated & possibly angled, as you say we’re not doctors, but it looks enough to possibly cause your symptoms.
In the Newbies Guide section there’s an explanation of the common symptoms & how they could be caused, & what nerves & blood vessels could be irritated etc.
What is surprising is that the styloid which looks long is your left, but you say the symptoms are on the right? The xray doesn’t show further down, so it could be that there’s calcification of the stylohyoid ligament & that can’t be seen on this image. There’s also a couple of white patches on the left of the image, your right, which isn’t clear enough to see what it is, so it could be the styloid that side is wide or angled too. Hopefully the CT will show this clearer.
It’s not just the length of the SP which can cause symptoms, but the angle & width can cause symptoms too.
Let us know how you get on when you get the CT results.
Hi ahenry!
I will add my observations as well. The right styloid (left side of the x-ray) looks very pointed to me & the left side looks pretty thick. As Jules noted, it’s not always length that causes symptoms. Other physical features of the styloid that she mentioned can cause ES symptoms even in the absence of elongation. MJ_NY also made the observation that you could have some calcification of your stylohyoid ligament(s) which can’t be seen in the x-ray. Whether or not that is also a problem will be more clear in a CT scan. Be sure to ask your x-ray tech to include some 3D images w/ the CT slices. You’ll be able to see what’s going on in your neck much more clearly if you can get some 3D images.
We’ll look forward to your CT results. Make sure the radiologist that reads the CT scans is familiar w/ ES!! It is defined as 1) elongation of the styloid process(es) OR 2) calcification of the stylohyoid ligament(s) OR 3) a combination of 1 & 2.
Hi ahenry,
I hope you find answers soon. I will say that many of the symptoms you are describing overlap with those I have experienced from ES and were helped enormously by surgery. If your medical team cannot find a way to explain or treat your symptoms, might be time to look for someone more expert in this particular rare disorder. In the interim, one option is to consider asking your internist to try one of the medications that can help with nerve discomfort (carbamazepine, gabapentin, amytriptline, etc). In my case, meds really help “take the edge off” my symptoms.
Hello ahenry5,
I echo everyone above, symptoms fit the bill and the X-ray you provided gives grounds for further imaging. CT with and without contrast will provide the most data for the bones and veins in your neck and at the base of your skull.
Just as an aside I am convinced this is not a “rare” disease - only rarely diagnosed!
Keep inching your way forward, perseverance will serve you well.
Hallo my conditions worse my fractures weren’t diagnosed, theeth are breaking, I have heart tachicardia and heart is pushing too fast cause severe pains. I feel strap and tears in sede neck and I am gonfia. I hope you understand me
I never find in Italy good surgeon
I want to find in England or France
We have a couple of possible Dr’s names in Italy- Dr Vincenza & Dr Vincini, Calabrese, Rimini, Romagna- a member has seen a video of them doing surgery.
In the UK Mr Axon is the most experienced doctor that we know of. He does private work at the Spire Lea Hospital, Cambridge, England.
There are several experienced doctors that we know of in Germany too & one in Spain, but we don’t know of any in France. The doctors are all on the 2019 list in the Doctors Info section.
Skull base surgeons are good to try too; have you looked for any in Italy?