Desperate! In so much pain!

Ugh. After realizing much pain relief (though not complete remission of other symptoms like lump in throat sensation) while on high dose NSAIDS, I was taken off of them for suspected peptic ulcer. Several weeks later, the symptoms creeped back. My PCP put me on Cox-2 anti inflammatories, but after several weeks of consistent use, the pain has only worsened. I’m in so much pain. I feel very hopeless.

Like many of you, I’ve seen many doctors including four ENTs, a speech therapist who specialized in swallow disorders, and a physical therapist all of whom tell me nothing is wrong. I don’t know what to do now. I’ve had ultrasounds, three endoscopies, and a CT with contrast. One doc tried to get an MRI approved through insurance, but they wouldn’t approve it.

What can I do now? I hate to think I’ll have to resign my life to pain.

I think your best best would be to go to a doctor who is familiar with Eagles. In my case I had to go to 17 doctors in several states to get a diagnosis and then even more doctors all over the country before I finally got help. Unfortunately, getting Eagles resolved often requires out of state travel and sometimes means seeing dozens of doctors. I hope you can get help before you have to see that many doctors.

Have you thought about trying Dr Samji in San Jose? If you don’t want to travel, you could try to find a skull based surgeon who is experienced operating in that area of the neck. Several people have had luck doing that. But as I recall you’re in Washington and I don’t recall many Washington people finding success locally.

I found quick success following my own intuitions about next steps based on doing a lot of reading on this website and research online. I found that being knowledgeable about my own symptoms and eagles’ research helped guide me to make the right decision (for me) to seek a surgeon outside my Health Insurance. I have now completed 2 surgeries [second 10 days ago] and have already found most of my symptoms to be resolved. I am glad I had the surgeries and didn’t just listen to the first doctor or the second who told me I was fine and didn’t recommend surgery. Only you can decide what is right for you, but I didn’t feel that the doctors were correct and with what they were telling me.

Hi Chrissy,
I know you’ve posted before, but I don’t remember if you’ve ever received a definitive ES diagnosis. What did your CT scan show?

If you can afford to travel, I highly recommend a trip to CA to see Dr. Samji. He also does phone consults for a fee. If you’re interested, I’ll email you the contact info for his medical assistant. She takes care of making his appointments and can give you rate info. He did both of my surgeries & I know of several people on this site who traveled from out of state to have him do theirs. He is an excellent surgeon w/ a great bedside manner - the best of both worlds!

Hi Chrissy - have gone thru the same issues myself. 1st it’s showed nothing - because radiologist NEVER thought to look for that & doc did not request specifically. Last ct-scan, knowing I had a “diagnosis” of Eagles I gave the tech a paper with all my diagnosis i.e.: RA, AS, Eagles etc. THIS scan report did come back & say I had elongated stylohoids. My new ENT/doc could actually read the scan (READ being the important issue here) and was shocked to see the state of my calcified elongated ligaments. Here is my suggestion…find a ENT that can actually read the scan himself & not rely on a report and make sure the radiologist knows you have or suspect Eagles. I have struggled with this for over 2 yrs and just this month after 3 scans has someone taken me seriously. Now I and my ENT are searching for a surgeon to do external surgery in the Denver or Salt Lake City areas asap. So far not getting anywhere, so If anyone knows of someone, please let me know. Best wishes to you Chrissy and I hope you get some relief and answers soon.

Well done you Gina for not giving up, glad to hear that at least you have the diagnosis…
I presume you’ve looked on the site’s Doctors List? It’s also worth looking into skull base surgeons, otolaryngologists, and any neuro or vascular surgeons experienced in the head and neck area. Hope that you find someone soon!

I use 25mg of nortripitline. It’s an old TCA that has the side effect of decreasing nerve pain. Takes about a week or two to start being effective.

Thanks Jules for your encouragement. Am still searching for a surgeon with no results. My ENT seems to have given up since he says there is no ENT to do external surgery in SLC. Sort of at wits end here with al the pain. I do believe it’s more than just classic ES…see article I am attaching where I’ve highlighted my symptoms… However if local doc doesn’t have info to confirm Vascular ES, I have nothing to send to docs in other places. Geez!! I’ve tried lighting afire under him with virtually no results and am so frustrated. If others have these same symptoms I have highlighted and have had a diagnosis or surgery for Vascular I would love to know. We have actually faxed my records & ct down to Dr Eusterman in Denver as he is contributing author…however there has been no reply when we’ve followed up. So basically ruling him out! Thanks to anyone out there who can offer help and advice.

Vascular ES
Symptoms common with Vascular ES are
*weakness, or
*fainting (syncope).
The styloid process is located between the External and Internal Carotid arteries, so if it is angulated, it can compress either of these. The stylohyoid ligament, if compressed, can aIso compress the arteries.
It is possible that compression of the External or Internal Carotid arteries could temporarily cut off part of the blood supply to the brain, leading to a temporary loss of consciousness. Many people have found turning or moving their head into a certain position causes this, as this can move the styloid process or calcified ligament and so compresses the artery.
In addition, pressure on these arteries can irritate the sympathetic nerve fibres in the artery walls, and this can send pain signals all along the artery. The ICA branches to the Ophthalmic artery, so if blood flow is reduced to this, there will be eye pain, and vision problems. Research states that if the ECA is compressed, pain is in the infraorbital (below the eye and to the side of the nose), temporal, and mastoid regions (below and behind the ear). If the ICA is compressed, then pain is in the ophthalmic area (E.Beder, Ozgursoy, Karatayli: Current Diagnosis and Transoral Surgical Treatment Of Eagle’s Syndrome).
And also ‘Hence, if the external carotid artery is affected, the patient may complain of pain in the neck on turning the head, or pain radiation to the eye, ear, angle of the mandible, soft palate and nose.
When the internal carotid artery is involved, pain over the entire head and larynxmay be involved.’ (Correll RW, Jensen JL, et al. Mineralization of the stylohyoid-stylomandibular ligament complex. Oral surg Oral med Oral path 1979.)
Pressure on the ECA can also contribute to jaw pain. Dizziness could be caused by compression of the Hering Nerve, which is a branch of the Glossopharyngeal Nerve, and connects to the carotid sinus to help regulate blood pressure. Also if there is compression or irritation of the carotid sinus- the area just before the carotid artery splits into the ECA and the ECA- this can affect the vagus nerve, and through the parasympathetic nervous system can affect blood pressure and heart rate.

The symptoms if the Jugular veins are compressed are slightly different. Because the veins take the blood flow from the brain, any compression of these interrupts the blood flow coming from the brain, and so therefore can increase the pressure in the brain (Intracranial Pressure- ICP). ). Over a long period sometimes other veins can compensate and take the blood flow away (‘venous collateral drainage’- Callahan et al). If the pressure in the brain increases, this is known as Intracranial Hypertension. Symptoms of this are also dizziness, plus headaches, tiredness, slow or confused thinking (brain fog), feeling of pressure or pulsing in the head and neck, feeling of pressure in the ears, pulsatile tinnitus (hearing heartbeat, often a whooshing sound), feeling generally ‘out of it’ or off-balance. It can also cause other neurological symptoms such as feelings of falling, or feelings of pressure on the head ‘like you’re wearing a hat’.
The impact of elongated Styloid processes compressing the jugular veins is the subject of a research paper- ‘New Eagle’s Syndrome Variant Complicating Management Of Intracranial Hypertension After Traumatic brain Injury’, by Callahan, Kang, Dudekula, Eusterman and Rabb- where there authors conclude ‘We believe that this demonstration of venous compression constitutes a new variant of Eagles Syndrome… This variant of Eagle’s Syndrome may represent a rare cause of such venous insufficiency that should be in the differential diagnosis of unexplained or disproportionately elevated ICP.’ The authors stated that the patient’s styloid processes were ‘elongated and posteriorly positioned’.

Sorry to hear that you’re not getting anywhere, Gina. Certainly the last paragraph you’ve highlighted- the symptoms from venous compression- I had, and they’ve been pretty much eliminated with surgery. Unfortunately I’m from the UK, so can’t recommend any doctors for you to try…
All you would need to confirm vascular ES would be a CT with contrast- have you had that? To be honest, some doctors don’t worry about whether the ES is classic or vascular, they’ll operate regardless. I know members who’ve seen Dr Samji in California have said that he doesn’t look at the contrast CT.
You could try starting a new discussion and ask directly if any members know of a doctor in your area, it might get noticed more as a separate discussion. Otherwise it may be that you have to travel further if that’s possible- I know some members have had to fly miles to get treatment.
Thinking of you…