Looking for an opinion on whether or not it is likely that I have ES. Most recent update is at the bottom of this post discussing my maxillofacial CT scan report which I am not convinced is “normal,” based on my understanding of ES.
Symptoms
The condition began approximately 5 years ago after waking one morning with sudden 10/10 head pressure, the worst pain I have ever experienced. The severe pain persisted for many months and gradually improved over the following year although never went away completely. Around the time of onset I had a gastro illness and had been performing some neck exercises at the gym, although nothing particularly strenuous.
Symptoms include:
Persistent 24/7 throat and upper neck pain
Intense pressure sensation originating in the upper neck and travelling into the base of the skull/brain (similar to pressure building in a pinched hose)
Electric shock-like sensations through the tongue and back of the throat
Visible tongue spasms/twitching
Choking or constricting sensation centred around the hyoid bone region
Severe, unexplained anxiety and feelings of impending doom that are completely out of character for me
Extreme nausea
Investigations Completed
MRI brain and cervical spine (with and without contrast) – normal
Maxillofacial CT w/Contract - normal (Arguably)
CT cervical spine (with and without contrast) – normal
Sports Medicine Physician – No definitive diagnosis
ENT – Possible glossopharyngeal neuralgia; Parkinson’s considered unlikely
Endocrinologist – Possible hyoid bone syndrome or Eagle syndrome
**As of a week ago I recently had a maxillofacial CT scan done that was recommended to me. Report has come through which I am not confident with their “normal” observations. Scans attached, apologises for them not being overly clear. Best I can provide.
**
EXAMINATION:
CT NECK WITH CONTRAST
Clinical History:
Chronic neck pain Tongue fassiculations. Physical thearpy
Technique:
Dual phase facial bone and neck CT.
Findings:
The styloid process on the left measures 40 mm in length, and the styloid process on the right 33 mm. Significant calcification of the stylohyoid ligament is not identified on either side.
The internal jugular veins appear compressed deep to the styloid processes bilaterally but a discrete filling defect to suggest thrombosis is not identified. The internal carotid arteries opacified normally.
The pharyngeal mucosal space is within normal limits noting tonsilloliths bilaterally, and the parapharyngeal fat planes are preserved. The larynx is symmetrical. The thyroid gland and salivary glands within normal limits. The arterial and venous vasculature of the neck otherwise opacifies normally. There is no evidence of lymphadenopathy.
The visualised brain is unremarkable within limitations of the protocol performed. The lung apices are clear. There is no fracture or suspicious osseous lesion. The mastoid air cells and paranasal sinuses are well
pneumatised.
CONCLUSION:
The styloid processes are normal in size and there is no evidence of calcification of the stylohyoid ligaments. Compression of the internal jugular
veins is demonstrated of the level of the styloid processes but the internal carotid arteries are patent
Yes, in the report it seems the radiologist dismissed this as nothing to be concerned about. Am I wrong to think I should be questioning this? I’m unsure as to how a compressed IJV could be causing all my symptoms. I would’ve thought a compressed cranial nerve would be the culprit but those seem even more challenging to view clearly with imaging.
@joeyvivid well the head pressure and feeling of doom could certainly be constriction of normal blood flow. Your styloids are long and could certainly be impacting the cranial nerves as they descend from the skull base. Also your neck seems to have lost is normal curve.
@joeyvivid obvious they are elongated and causing issues , you need to see someone that understands Eagle and knows how to read imaging. I am so sorry you are going through this. One of these days radiologist will wish they had done their job!
@joeyvivid - I’m astounded that any knowledgeable radiologist or doctor would call your situation normal. Both IJVs are significantly compressed & you DO have calcified stylohyoid ligaments contributing to your styloid lengths in spite of being told you don’t.
It appears that C1 is more the culprit for your IJV compression than your styloids so you’ll need to see Prof Elliott or some other surgeon who has a lot of experience with shaving the transverse process of C1 to take the pressure off your IJV & vagus nerve which will help relieve some of your symptoms. Getting your styloids cut back above the level of C1 will help other symptoms.
If you want, I can annotate a couple of your images, but you seem to know what’s where in the images so I didn’t annotate any of them.
I agree with what the others have said about your scans- I can’t label them for you though I’m afraid… As your C1 processes are causing some compression too, as @Isaiah_40_31 says Prof Elliott would be the best person to see, he & Dr Rao are the only doctors that we know of who do IJV decompression with C1 shaves:
A/Prof Michael Elliott, ENT, Unit 211/300 Pacific Hwy, Crows Nest NSW 2065.
ph# +61 2 8355 7940 [Operates at Royal Prince Alfred Hospital/ or Concord/ or privately at The Mater(?) with Dr Michael Halmagyi or Dr. Rao (Neurolosurgeons) and Dr Jeff Parker (Radiologist)]
•Dr. Prashanth Rao https://www.brainandspinesurgery.com.au (operated w/ Prof. Michael Elliott on one member who needed a C-1 shave for IJV decompression)
You can have a look in the past discussions about Prof Elliott as several members have had surgery with them, and several are on his waiting list.
Several cranial nerves exit the skull base very close to the styloid processes so that’s why you can get nerve pain- the glossopharyngeal nerve is commonly affected, and the vagus nerve, which can cause the anxiety and nausea.
You mention constriction in the throat around your hyoid bone, unfortunately your scans don’t show the hyoid so we can’t comment on that- quite a few members have elongated hyoid bone processes as well which can cause that symptom. (But it can be from nerve irritation too.)
It is interesting, Valum has helped me too. I do not know why yet, some members gave me a sensical reason why it can help, but doctors have no clue, or at least they do not want to guess.
I hope you get to find more answers, this “thing” is a process, sometimes slow and tedious. I am waiting to find my results of a second MRI to figure out whether my c5,c6,c7, and d1 have to do with my pains. Once they know if they are the cause or part of the cause I will go for curgery. So “this thing” sometimes is one step forward and two back.
@Algobe I think valium can be useful in a couple of ways. First, it can help relieve muscle spasms. Second, as a benzodiazepine it is an anti anxiety medication and acts to calm an overexcited nervous system. A calmer nervous system is more tolerant/less reactive or hypervigalent toward pain. There are drawbacks, such as it’s an easy medication to get addicted to and even if you don’t get addicted your brain develops a dependency on it and you will need to taper off it properly to avoid withdrawals. If it’s the calming quality that seems most useful, gabapentin might be an option as it also down regulates excitatory response.
Its funny because pain killers don’t work at all. Numbs the rest of my body except the area where all the pain is coming from. End up feeling the pain twice as much haha. I mainly take valium at night to sleep. For me it reduces the tongue spasms and choking sensation so I can actually get a somewhat good night sleep. But yes it is a shame at my age I now have a dependency on it just so I can fall asleep.
I’ve been in contact with Prof Michael Elliot. Hopefully will be able to get a consult with him within the regular 3 month waiting block. Fingers crossed.
We do the best we can with what we have. I’m glad you are taking care of yourself. Sleep is essential. Gabapentin also helps improve slow wave sleep if you want to explore that with your doctor. Fingers crossed for you too!
, you need to see someone that understands Eagle and knows how to read imaging. I am so sorry you are going through this. One of these days radiologist will wish they had done their job!