I’ll start with a short introduction because honestly, I’m not sure what’s the best way to share all of this.
I’m 33 years old, and I live in Bucharest, Romania.
A few months ago, I had the flu. After recovering from it, I began experiencing pain in my neck when swallowing. I went to an ENT specialist, but they told me “it’s all in my head” — even though I clearly felt something was wrong.
The very next day, things escalated. I started having multiple strange symptoms that haven’t gone away since. I’ll list them here in the hope that someone else can relate:
My Symptoms:
Dizziness during physical effort – I feel like I’m not getting enough air, followed by dizziness and tunnel vision
Sharp or stabbing pain under my right shoulder blade, like being poked with a knife
Stinging pain in the area of the gallbladder, and pressure near the liver
Digestive stinging sensations in the lower right side of the abdomen
Blurry or foggy vision, especially when dizzy
When I press inside my mouth, near the tonsil, I can feel a hard bony structure
I feel okay in the morning, but as the day goes on, the dizziness comes back
When I sit down, I feel pressure in the area of the liver and intestines on the right side
I’ve had all kinds of tests done, and most came back “normal.” But nothing feels normal. I’m starting to wonder — am I crazy or are other people experiencing the same things? Could this be vascular Eagle Syndrome?
Also, has anyone here had a consult with Dr. Osborn? Was it helpful? Did it change anything for you?
Just to mention, never had health problems and was always doing sports.
Thanks so much in advance for reading. Just writing this and knowing I’m not alone already helps a lot.
Many of your symptoms do seem ES related (and mentioned by others) and some do not. What tests and imaging have you had? Anything that shows the styloids?
You have Universal health care in your country but the quickest and easiest way to try to see the problem is a panoramic x-ray from a dentist or a cbct if they will order one . If you get lucky your issue will start to show up at this step. . You can upload the images here to have people take a look. Your dentist may have no clue.
Once you have some proof then you can start trying to get them to listen. It is an uphill battle for most. A few here get lucky and breeze through but most of the stories are very frustrating
Research accepted symptoms in your country so that you will know what they are looking for when they agree to order tests.
@Roeagle - You noted that you’ve been diagnosed w/ ES. Did you have a CT scan that showed elongated styloids?
You do have symptoms that we see w/ ES & your dizziness & tunnel, foggy & blurry vision could suggest either internal carotid artery compression/irritation or internal jugular vein compression. The pain in your abdomen could be coming from irritation to your vagus nerve by your styloids/calcified stylohyoid ligaments, & your should pain could be from your spinal accessory nerve.
It makes sense that you feel ok in the mornings after a rest but get worse as the day progresses because you’re active & moving your head & neck all day which brings the elongated styloids into intermittent or continuous contact w/ nerves which may not have been bothered while you slept. Those nerves & possibly vascular tissues get irritated by the styloids during the day & increase your symptoms.
We have a number of members who’ve had consults w/ Dr. Osborne. He is a good diagnostician, but he charges a very high fee for doing ES surgery. I don’t know if he would consider reducing his fee for someone traveling as far as you would need to for surgery, but for people in the US it’s $35,000 USD for one styloidectomy & $51,000 USD for both sides. He does them 2 days apart rather than all at once. An initial consult with him is about $250 USD, & he will do a telehealth initial consult.
Hi & welcome to the site!
If you’ve not read the info about common symptoms that can be quite helpful, here’s a link to that: ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
It could be that you have Vascular ES & that’s causing the dizziness, otherwise some of your symptoms could be vagus nerve irritation; the vagus nerve is called the wandering nerve because it affects so many areas of the body, & it can easily be irritated by the styloids, here’s a link to a discussion about vagus nerve symptoms by one of our members: Successful Surgery for severe Vagus Nerve Compression - General / Eagle Syndrome Stories - Living with Eagle
The accessory nerve can also be affected with ES which could cause your shoulder pain…although have they done any tests to check your spleen & pancreas, as they can cause shoulder pain too, given you have abdominal pain…might be something to consider.
Have you had a CT done of your neck? If not that would be a helpful next step; a CT with contrast ideally from the base of the skull down to your hyoid bone. That will hopefully show the styloids & then you can rule ES in or out… When you feel the bone near your tonsil, does it make any symptoms worse? Don’t push it hard, but sometimes pressing it can flare symptoms so is another indicator that it could be ES…
Quite a few members have seen Dr Osborn & speak well of him, you can use the search function on the site to look up some discussions.
I hope that this helps!
I’ve done a CT scan and a panoramic dental X-ray, and both confirmed the diagnosis.
Unfortunately, I can’t attach the images here — not sure why.
What I still don’t understand is how such small bones can cause such major complications.
I also had an ultrasound of my liver, pancreas, and intestines today — everything came back normal, yet it constantly feels like something is wrong in that area.
I’ll most likely schedule a call with Dr. Osborn soon.
@Roeagle - Your styloids are IMMENSE & as noted above, VERY thick! No wonder you’re having the symptoms you are experiencing!
We have a few other members who’ve had their styloids removed by a Maxillofacial surgeon & have had good results. The fact you’re seeing a very experienced doctor is very good. If he cuts your styloids back as close to your skull base as possible, your symptoms are very likely to go away or at least be less of a problem over time. It can take quite a few months, even up to a year, for irritated nerves to recover so don’t be discouraged if you wake up from surgery still feeling your symptoms.
Will your surgeon shorten both styloids in one surgery or will he do one in May & the other sometime later?
Hi
I had surgery by a Max facial surgeon in UK, at Sunderland Royal Infirmary, I’ve currently forgotten his name, but he was excellent.
He was able to diagnose my ES by my symptoms alone, he used MRI etc to confirm his diagnosis.
He used radiological services during surgery to assist his procedure.
I also had the external procedure due to my vascular Eagle Syndrome. I think external is much the preferred route, much less risk of infection, my scar is v faint, he used a natural crease in my neck. To be honest, I was not worried re a scar, I just wanted to be rid of my symptoms.
I had a relatively easy recovery. I would suggest you sleep sat upright/ semi recumbent for about 2/52, to reduce swelling.
7 months later, I am much recovered. I had pain from the relocation of one of my muscles, it needed to gain strength, it improved over 6mth period and now I don’t notice the pain.
The surgeon is going to see me in 1 year, to assess the development of my other styloid which is at max normal length currently.
Wishing you v good luck.
Hi
My symptoms were not as diverse as yours but were considerable
Light headedness, dizziness when moving head in certain positions, pain in certain positions of neck, reduced neck movement but I had not quite realised how reduced. Plus after surgery, I felt more mentally alert, this could have been due to psychological relief but my surgeon thought it was likely due to the resolution of the reduced vascular circulation to my brain.
I also have tinnitus in the affected ear, alas not resolved by the surgery. My surgeon did not think his surgery would resolve the tinnitus.
Having read your symptoms list, I also think lots of your symptoms will be related to the vagus nerve irritation.
During gynae and eye procedures, it has been commented that my vagus nerve is very responsive.
Perhaps this is normal for me or perhaps it was low grade irritated on a regular basis.
Without really knowing why, I do feel better in general since I have recovered from my surgery.
Strange old condition ES, I think it will be more common than diagnosed because I think lots of people will die of other causes ie stroke, without anyone diagnosing ES .
Take care
Fab supportive help on this site.
@NxJane , if you can find out the name of your surgeon that would be really helpful, as our UK members are really struggling to get surgery! I’m really glad that your surgery was successful, that’s great to hear!
I have added Mr. Wilson to our Doctors List for England. Thank you so much for coming back to share how you’re doing @NxJane! It’s wonderful to hear your recovery is going so well! We’re very happy to have Mr. Wilson’s name, too, since, as @Jules mentioned, our UK members are struggling to find surgeons there who are well acquainted w/ ES & provide good surgical outcomes.
