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[Alexandra]

I am currently undergoing evaluation for possible ES.

It has been a long process compounded by conflicting opinions.

For well over a year, I experienced jaw pain on the left side. The Veterans Administration dental clinic said the pain was related to my teeth. In November, they extracted 3 teeth on the left side.

When I returned to the dental clinic in January, I informed the dentist that I was still experiencing severe pain. He started palpating my jaw and neck and noted a mass (approximately 1 cm) behind the left mandible.

They ordered an MRI of the brain but that imaging study did not capture the neck.

I went to a civilian ENT who was concerned I had osteonecrosis. He referred me to an civilian oral surgeon.

The civilian oral surgeon ordered a CT without contrast of the face and neck. The radiologist did not find any masses.

The civilian oral surgeon said he was stumped and wants to monitor the mass for several months.

I then made an appointment for evaluation by a military ENT doctor. In 2003, I had extensive jaw surgery to include a Le Fort I advancement and HDR implants in the mandible. They thought perhaps the pain was being caused by a hardware failure. So they refer me to the military oral surgery clinic.

The military oral surgery clinic reviewed the CT images and made a diagnosis of ES. They referred me back to the military ENT.

A different doctor examines me this time and another doctor reviews the CT images and states the styloid is “impressive.” They tell me that ES is a diagnosis of exclusion and that they want pain management to do a nerve block to rule out myofascial pain syndrome.

My pain management appointment was today and he said the styloid measures approximately 40 mm. He is sending the images to a neuroradiologist for review. He wants to do some type of injection/nerve block while guided by X-rays and ultrasound.

Current medical history:

• Wegener’s granulomatosis
• Rheumatoid arthritis
• Chiari I malformation
• Sjogrëns syndrome
• Progress polyneuropathy
• Inflammatory myopathy

Current medications:

• Gabapentin 2700 mg at bedtime

Current symptoms:

• Extreme pain behind left mandible
• Extreme left ear pain (It feels as if an ice pick is being jammed into my ear.)
• Sensation of something stuck in my throat. (Previous work-up for this issue included an endoscopy and dilation of the esophagus. No reflux was noted and the sensation still remains.)
• Excessive salivation.
• Extreme burning sensation along jaw line.
• Occassional gurling sensation near the jugular vein.

Did any of your doctors require an injection/nerve block before making an official diagnosis of ES? If so, what type of injection/nerve block?

Are there radiologists who can review CTs? I am concerned that the radiologist did not note anything about the styloid while the oral surgeon and pain management doctors did.

If it is determined that surgery is indicated, I am hesitant to use the military ENT surgeon. He’s only performed one ES surgery several years ago. Are there experienced surgeons who can make the diagnosis and perform the surgery within a short time free? (This applies only if I have to travel to a different city.)

Thank you in advance for your assistance.

[heidemt]

Wow, you've been on quite a journey and unfortunately, that's pretty common with Eagles. But it's fantastic that they finally "found" the styloid. Your symptoms sure sound like Eagles.

It's not uncommon for some doctors to require a nerve block injection to diagnose Eagles, but it seems to me that mostly doctors who don't know that much about Eagles are the ones who do that. The experienced Eagles doctors make the diagnosis generally with just a CT scan (with contrast usually but not always).

I don't think that it's really an issue that the radiologist didn't note the styloids because they typically aren't trained to look for them and often don't look for them unless they are specifically told to do so.

I think you're right to be hesitant about using the doctor with little experience. It's much better if you can get a doctor with Eagles experience. But, having said that, lots of people have been cured by someone who didn't have much experience with Eagles, but was a good surgeon. The most important thing seems to be to get a surgeon who has a lot of experience doing surgeries in that area of the neck.

We have a doctors list and most of them have done at least one surgery on a forum member, but it's hard to find someone with a lot of experience doing Eagles surgeries. The two most experienced Eagles doctors in the country are Dr. Samji in San Jose, CA and Dr. Cognetti in Philadelphia. (Many of us have had to travel pretty far to get surgery.) I'm not sure how quickly they process out of state patients, but I know both of them have procedures in place for them. The best thing would be to call their offices and ask about it. But again, like I said, it's very possible to have a very good outcome as long as you go to a good surgeon who knows what he's doing in that area of the neck. A number of people have said that they had success with a good skull-based surgeon.

[Jules]

We have had several members join recently with Chiari Malformation- there's a Ben's Friends site for that too if you're not already a member. I think given that medical history alone, you need to be even more careful which surgeon you choose to operate. You can search for Chiari in past discussions and find the other members/ discussions- I think there was a mention about some helpful doctors in that.

Styloids can cause pressure on nerves- the pain in your ear sounds like geniculate neuralgia, so adding in or trying another nerve pain medication in addition to gabapentin might help with that. One of our members- Snaplleofdiscord- found putting Lidocaine patches on the area helped a bit too helped, so you could try that for the jaw pain.

The hypersalivation is interesting, as you have Sjogren's? How did you get diagnosed for that- was it through blood tests? There's also a Ben's Friends site for that if you want to get in touch with others! ES can cause hypersalivation sometimes.

As for the injection, there's a lot of mentions in various research papers that ES should be diagnosed by injecting the area and seeing if the pain goes, to rule out other conditions. Some people have found these injections to be helpful for pain relief. But not all doctors diagnose this way- some are happy to diagnose through symptoms and elongated styloid processes alone.

Sorry that you have so many medical conditions to deal with- and hope that you can find some help for the ES soon.

[Alexandra]

Thanks for your input.

I had an appointment with Dr. Morehead at the UTHSC.

He reviewed the CT and said the left styloid was very elongated. He also stated the carotid was being pinched by the styloid and that the transverse process was elongated on both sides. (Since the CT was performed without contrast, is it possible to visualize the carotid?)

He will present the case to a head and neck surgeon as well as their neuroradiologist.

He has performed several internal approach surgeries but said the head and neck surgeon has performed the external approach.

Tomorrow, I will have the ultrasound/X-ray guided injection at the military hospital. I will ask if they note any type of compression.

I had to go to the ER last Monday because of left-sided facial numbness and severe headache. They said it was just a headache, ran fluids, and injected lidocaine at the base of the neck. There was no relief from the pain nor did the numbness resolve. Of note, when my dog awoke me with barking around 5:30 a.m. that morning, I felt I was slurring my speech as I was talking to him. Unfortunately, he could not confirm that.

[Jules]

That all sounds scary, but at least you're on the road to getting some treatment. It's not normally easy to see the blood vessels without contrast, but at least they're taking it seriously. Hope that the injection helps. Tell your dog not to wake you at 5.30 am any more- you need your rest!!

[Bongty1]

I had my x-ray yesterday which I alone decided since my ENT doctor just gave me meds for dizziness and tinnitus. I know x-ray is not the best for finding out if your styloid is elongated but that all I can afford right now. CT scan is still the gold standard. But to my amaze and the radiologist, the styloid was remarkable. If I could only show it here.

[Jules]

I was diagnosed with a panoramic x-ray, so yes, it can work sometimes! Well done advocating for yourself, I hope that you can get some treatment now.

[Isaiah_40_31]

Hi Bongty1,

You can post your x-ray image here if you have a copy on your computer. Two ways to do this are to start a post & then drag & drop the image into your post. The other more official way is to click on the “underlined up-arrow” icon in the symbols at the top of your text box. It will allow you to choose a file from your computer & upload it into your post. We would be happy to look at your x-ray. Though we aren’t doctors, we can give non-medical opinions about what we think we see.

[Bongty1]

here it is Isaiah.

[Isaiah_40_31]

Hi Bongty1,

You did it!! Good work! I’m sending it back to you w/ red arrows annotating what I think is the styloid. It does look long but I can’t tell anything about whether or not it’s compressing your ICA. You would need a CT w/ contrast to determine that more accurately. That said, your symptoms seem to indicate that is the case.

[Bongty1]

Thanks Isaiah. You don’t know how much that means to me. I can now cross out “me crazy” on my list. I’m in the process of further lab exam specially CT scan. My highschool classmates are raising funds for me.

[vdm]

Hi @Bongty1

The plain X-ray shows what it might be the styloid (where Isaiah has marked, also another possibility is the higher density area just a few millimeters on the right). But to be honest I would suggest you to get a full panoramic X-ray at the dentist’s office if that is affordable for you. If those are the styloids, I guess they should be crispy clearly visible on the panoramic xray. I quickly checked prices* in Manila and it’s about 1000-1500 PHP*.

You might want something like what is in this example:

or at least like in this (this one is a bit narrower, the spine isn’t that visible):

As a side note, I am surprised that a “stock” image has slightly elongated/calcified styloids/ligaments – which means, this might be not THAT rare thing after all.

It might be a good idea to let the dentist know that the image needs to be “as wide as possible” with the neck vertebras visible, not only the jaw.

* https://www.dentalworld.com.ph/dental-services-rates - one of the first links on google I found.

[Bongty1]

Thanks vdm. I don’t know how you got the price in Manila unless you are a Filipino. I will be setting a schedule for CT scan. Hoping that my classmates can generate enough funds. I don’t know if it’s crazy to think that I’m really looking forward to have an elongated styloid, coz if it is not, where else to look for? It’s easy bear to know what’s the root cause is than not knowing. And you guys don’t know how much help you are giving me. Thanks from the bottom of my heart.

[Jules]

Not the best x-ray in the world but I agree in our non-medical opinion that it could well be a long styloid there! I hooe that you can get a CT to confirm it!

[Bongty1]

Thanks Jules, my ENT doctor told me to have it done with cone base CT scan. So I looked up for a dentist clinic with that equipment. Only one clinic near me has it. Thank God. Half the cost of the CT with contrast. My question Jules is will it be as good as the CT with contrast?

[vdm]

CBCT has its pros and cons. In any case you should clearly tell the dentist/technician doing the scan to include the area from skull base and behind the jaw. Otherwise you might end up having a perfect scan of teeth and the parts of the jaw and skull where the tooth roots are, but not the area where the styloids grow from.
That’s why generic opg (dental panoramic xray) as wide as possible might be a good cheaper alternative to try first, in my non-medical non-professional opinion.

[Bongty1]

Thank for the advice vdm. My ENT doctor made a request to specifically target my styloid to be scanned. Hope things go well tommorow.

[vdm]

Then it should be all right, good luck tomorrow!

[Bongty1]

Break a leg or in this case break a styloid. Lol.

[Isaiah_40_31]

Love your sense of humor, Bongty1!