Hi Team. New to this as well. Needing insight on scan needs

[BogeyZ81]

Have appointment with Dr. Krempl in August, but Im needing insight on what scans I can have done prior to provide him

Background: Left ear and throat pain started in Dec. Was blamed on reflux and post nasal drip, which made sense for me and my sinus history. Jan 17 got sick with what was assumed to be Covid, as one colleague on a work trip got diagnosed and several of us got sick

It was then that the pressure in the ears and back of head started and have not stopped. The main discomfort feeling like somebody is squeezing my throat, cutting off blood flow to my head.

Did the obligatory PCP visit three visits to ENT, then a Gastro visit which led me down the path of Eosinophilic Esophagitis, which I was diagnosed with in Feb. Again, not a total surprise. PPI’s and swallowed steroids followed but my symptoms, as stated by my Gastro Doctor, weren’t really indicative of EoE. (Ear pressure/pain, head pressure, jaw discomfort, vertigo, pulsatile tinnitus etc)

A month or so ago, I went to look at the TMJ route and my dentist said it sounds like an issue hes had patients mention before called Eagle Syndrome. Pain at this point had really set in for whatever reason. Especially heavy in my left jaw/face. It was like wisdom tooth pain. Ive since stopped wearing my night guard ironically and that seems to have helped. During this, when back at my parents in Texas, my mom, who was a dental assistant for 40+ years had me take a pano at her former office to make sure it wasnt an abscess. *Pano attached

Both dentists mentioned Eagle Syndrome at this point.

I live in CO, so I had two referrals over to Hepworth but as noted in other boards, hes not taking new patients due to the office turmoil hes currently in. My wife is from Edmond, OK, and we are back frequently, including two weeks ago when I went to the Emergency Room for the pain, where I had a CT w/o contrast that showed not tumors etc. I came across Dr. Krempls name on this board and it happened to be in the OU Medical system, the system of the ER that I went to.

Long question short: Dr. Krempls office is asking for any notes etc that I might have with my “diagnosis”. I told them I dont have anything official, as the mentions of ES were informal, by two dentists and the ENT that referred me to Hepworth, because they didnt treat Eagles Syndrome. I have a PCP visit on Tuesday, to regurgitate the whole story to him and have him request whatever scans may be necessary that can help Krempl’s team expedite diagnosis and treatment. Any insight would be appreciated.

[BogeyZ81]

[Jules]

The left side (right in the photo) styloid looks like it could well have calcified the stylo-hyoid ligament also, that is pretty long & angled so could well be causing symptoms, and it’s pretty thick at the top so could also cause vascular compression! The styloid on your right looks slightly longer than average maybe & looks thinner, I can’t see any calcified ligament. Good spot by the dentists, & for your Mum suggesting getting an x-ray!
If the CT was of your head & neck area, then it should show the styloids clearly, and should be enough to get an ES diagnosis, however you do have symptoms of vascular ES- ear pressure, vertigo & pulsatile tinnitus are all common with compressed Internal Jugular Veins, so a CT with contrast might be helpful. Some members have been able to get dynamic ones done, so with their head in different positions which shows compression even better as it doesn’t always show as well laying flat…Not sure if anywhere in your area would be able to do that, but hopefully your PCP might know. It’s a shame that you live near Dr Hepworth and aren’t able to see him, he is extremely experienced with VES, but it’s understandable you don’t want to keep waiting!

[BogeyZ81]

Thank you so much for the reply, Jules. I’ll take the CT w/contrast recommendation to my PCP on Tuesday. Hepworths office said they may begin taking new patients again in the October timeframe so we’ll see how the appointment with Krempl goes and take next steps.

[Henrik]

So I’ve labeled everything for you, and edited the image making the Styloids more pronounced.

Take a notice on the R Styloid process, it looks like it could be in normal length but there is a slight calcified part off styloid making it elongated.

L Styloid Process is elongated and there is a calcified ligament. I’ve marked with green roughly where the calcified ligament starts. This can explain your freqeunt and worsned symptoms on your left side, specially pulsitile tinnitus as there could be blood vessels being irritated or compressed, and facial nerves being irritated. The Styloid Process can also create pressure off the ear canal, and come in conflict with the muscles around the jaw and the stylodhyiod muscles, wich is also painfull.

So, you’re asking about what scans to do. I agree with Jules by taking CT W contrast scans off neck and skull. Best if taken dynamically.

CT scans W contrast makes soft tissue and blood vessels visable as they are more dens than bone, so you can rule out compression or other things happening in the soft tissue.

[BogeyZ81]

This is great stuff Henrik. Thank you all so much. Appreciate you taking the time to do this

[Isaiah_40_31]

@BogeyZ81 - Third moderator weighing in here. I agree w/ both @Jules & @Henrik that it sounds like you may have internal jugular vein (IJV) compression. It’s really imperative to see a doctor who deals w/ vascular ES for surgery as an ES surgeon unfamiliar w/ it may cut your styloid back but not deal with the vascular compression if there are other components besides styloid weighing in or styloid may not be cut back far enough to alleviate compression. I speak from experience here as I’m now dealing w/ IJV compression which was left untreated when I had my styloidectomies in 2014/2015. I was ignorant of symptoms then, & it’s been a long journey getting diagnosed & hopefully having surgery w/ Dr. Hepworth later this year.

There are other vascular ES surgeons on our Doctors List with Dr. Nakaji in Phoenix, AZ, being closest to you. I’m reasonably sure he’s not booked out as far in advance as Dr. Hepworth. We’ve had other members who’ve seen him for resolution to ES & IJV compression & have had good surgical results. You can search for posts about him on our forum by using the magnifying glass search tool in the upper right of this page & typing his name in the search box.

•Dr. Peter Nakaji, 755 East McDowell Rd., Phoenix, AZ, 602-521-3201, Works w/ vascular ES, has also done a research paper about shaving C1 process as well as styloidectomy
Find a Doctor | Banner Health

[BogeyZ81]

@Isaiah_40_31 Thanks a ton. This is really good to know. Can I ask, is it known if Dr. Krempl in Oklahoma deals with vascular compression? And I assume that if I get a CT w/contrast, that will show that I indeed have compression?

[Isaiah_40_31]

As far as I know, Dr. Krempl does not deal w/ vascular ES, but you can certainly ask him about it. As far as I know, we only have 5 doctors on our Doctors List who routinely do vascular ES surgeries - Dr. Hepworth, Dr. Nakaji, Dr. Lawton, Dr. Fargen & Dr. Costantino.

A dynamic CT w/ contrast is the best test to look for vascular compression. Dynamic means the scan is done w/ your head in different positions (looking up/down, left/right, etc) as that can better show if the IJVs or ICAs are being compromised by the styloids.

[BogeyZ81]

Interesting. Okay, will try and request contrast CT and see where that takes me

[BogeyZ81]

Another random question. My throat clicks on the left hand side, especially when things are flared up or gunky. Does that tie into this? I just assume it was the hyoid bone. Brought it up to the ENT that did my sinus surgery some time back and he just kind of waved it off

[Isaiah_40_31]

YES! Throat clicking when swallowing can be indicative of stylohyoid ligament calcification or elongation of the greater horn of the hyoid on that side. The ligament calcification is definitely part of ES. Hyoid bone elongation would be part of Hyoid Bone Syndrome which has very similar symptoms to ES. Both of those situation should show up in a CT scan if they are present.

[BogeyZ81]

Wow Such a mess But good to know! Thank you!

[BogeyZ81]

@Isaiah_40_31 @Henrik @Jules

Interesting update: I have a CT w/contrast scheduled for 7/15, but when I asked Dr Krempls office what scans I need to have taken before my visit I was told to get a CT scan without contrast of my Neck

Any thoughts on that? I was still going to keep my upcoming scan but I guess I need to get another one scheduled of the neck

[Isaiah_40_31]

Some doctors prefer the head/neck CT scan to be done w/o contrast because the soft tissues aren’t visible so the bony structures are more clear. When contrast is added during a CT scan, soft tissues such as veins, & arteries become visible & can obscure the bony structures making it harder to diagnose ES & measure styloid length.

I believe CT scans can be ordered without & with contrast. The CT w/o would be done first then contrast would be injected & a second scan done that way. Be sure to ask that the CT w/ contrast be done dynamically. Your doctor must order it that way as the radiology tech won’t do it dynamically if your doctor doesn’t order it. Bottom line, see if your CT order can be revised before your appointment so it includes both w/o & w/ contrast & is done dynamically once the contrast is added.

[BogeyZ81]

Great intel. Thank you so much

[BogeyZ81]

Well team, I got my scans and this was the report that came with it below. Just need to send this to Dr. Krempl and see how things transpire. If I can figure out how to upload the scans as well, I will do so, just to fully round out the update. And as humor would have it, I have a sinus infection while getting scans, which is mentioned in the SINUS/MASTOIDS section

FINDINGS:
INTRACRANIAL CONTENTS:
No acute intracranial hemorrhage.

No acute infarct identified by CT.

No mass effect.

No extra-axial collection.

No abnormal brain parenchymal enhancement.

Normal white matter for age.

Parenchymal volume appropriate for age. No hydrocephalus.

CERVICAL SPINE:
ALIGNMENT: Alignment is anatomic.

BONE: No acute fracture identified. No suspicious osseous lesion
identified by CT. Grossly preserved vertebral body heights. Total
degenerative disc disease and facet arthropathy without high-grade
spinal canal stenosis.

NECK:
SPACES: Elongated calcified left stylohyoid ligament which measures
approximately 7.3 cm. Note that this does not approximate the
pharyngeal mucosa, but does terminate near the glossotonsillar sulcus.
The distal right stylohyoid ligament is calcified, however, the
majority of the ligament is noncalcified. The deep spaces of the
infrahyoid and suprahyoid neck are symmetric without abnormal
enhancement, mass lesion, or inflammatory changes.

ORAL/NASAL/PHARYNX/LARYNX: The oral and nasal cavities are
unremarkable. Normal mucosal contours and attenuation within the
nasopharynx, oropharynx, and hypopharynx. The aryepiglottic folds and
epiglottis are normal. Symmetric true vocal folds.

GLANDS: Homogeneous attenuation of the thyroid. The parotid and
submandibular glands are normal. No discrete mass or acute
inflammatory changes.

NODES: No pathologically enlarged, morphologically suspicious, or
necrotic nodes in the neck.

VESSELS: The major cervical arteries are opacified. The jugular veins
are patent.

SINUSES/MASTOIDS: Severe left maxillary inflammatory mucosal
thickening. Mild to moderate sporadic sinus mucosal thickening
otherwise. No evidence of obstruction, status post functional
endoscopic sinus surgery. The mastoid air cells are clear.

OTHER: The lung apices are clear.

[Isaiah_40_31]

WOW! 7.3 cm is REALLY long for a styloid. That sure could help identify at least part of the cause of your symptoms! Even though the radiologist was a bit dismissive about the distal (meaning it’s down near your hyoid bone) right stylohyoid ligament calcification, it may also be contributing to symptoms, but that will be unknown until you have the left styloid removed, & you recover from that surgery.

Before you upload images (using the underlined up arrow in the menu at the top of the text box), make sure all of your personal information is blacked out. I look forward to seeing the image of your styloid.

[Jules]

Oh my, that’s huge! Not quite a record on here, but not far off! I hope that Dr Krempl will help you

[BogeyZ81]