Finally Diagnosed after 2 1/2 years

Well you are definitely on the right track into finding answers. Although I do have to say that there is no “normal” size nor shape of these things. If your doctor continues to beat around the bush on your journey, push for a CT with Contrast as that will show the positioning correlation of your personal anatomy and how they relate to one another.

Excellent step!!

Jules- should we consider posting a helpful link to http://m.radiantviewer.com? It obviously helped kingdoz tremendously.

Will do that, and thanks.
Kingdoz- both styloids do look quite thick, nobbly and angled, don’t they? Maybe Mr Corbridge is getting a bit reluctant to do surgery?

Yes they do look a little wobbly and funny shaped. Funny thing is Southern_Rancher mentioned a possible other problem (which may be the actual cause of my pain/issues) even more so or together with the styloids. At least I now have 3D images, so I have a good start and some hope for diagnosis which is the first start to recovery. Mr Axon is getting booked now :slight_smile: Have a great weekend all…

Hi All Again.
Well I managed to now get a second opinion not from a DR, but from another Radiographer based on the 3D scans this time rather than regular CT. Unfortunately its all in medical wording so any help would be great understanding what areas might be worrying. Once I understand, maybe its time to seek Mr Axon now (as mr corbridge literally dismissed me without even seeing this report based on seeing the initial non 3d ct scan). I think maybe that’s the next step, but if anyone understands this report in the meantime, could be very helpful and much appreciated. Thanks
Kingdoz

CT SCAN OF TEMPORAL BONES AND SKULL BASE (WITHOUT IV CONTRAST) CLINICAL HISTORY: Pains and inflammation, mainly in the left neck/throats and some ear pain, and also head dizziness. Suspected Eagles syndrome or a C1 atlas problem. COMPARISON: None available. FINDINGS: Both styloid processes are elongated and calcified, each measuring approximately 3.4 cm in length from base of skull. Elongated styloid processes (more than 3 cm) may lead to Eagle syndrome. However, this needs clinical correlation. The calcified inferior parts of the styloid processes are attached to the superior osseous parts with intervening small fibrous tissue. The styloid processes are seen reaching inferiorly up to the level of the oropharynx. Tonsilloliths are noted bilaterally. The nasopharyngeal soft tissue is grossly normal with no obvious evidence of any mass lesion or luminal compromise. Adenoids are not enlarged. The external auditory canals, tympanic membranes, and osseous labyrinths are normal bilaterally. There is no evidence of erosion of the ossicles, scutum, or tegmen tympani. The mastoid air cells are well-pneumatized and well aerated. No suspicious osseous lesion or fracture is identified. Mild deviation of nasal septum to right is noted. A small concha bullosa of right middle turbinate is noted. Mild hypertrophy of bilateral inferior nasal turbinates is noted. Mild mucosal thickening is noted involving the ethmoid air cells on right, suggesting inflammatory changes. Rest of the visualized paranasal sinuses, are clear without any evidence of inflammatory mucosal thickening or air-fluid levels.
Visualized facial bones are unremarkable. Skull base and visualized parts of the cervical spine including C1 and C2 vertebrae are unremarkable. Atlanto-dental distance is preserved. Preserved heights of C2-C3 and C3-C4 intervertebral disc spaces is noted. Preserved heights and alignment of C1 and C2 vertebrae are noted. A metallic density mesh is noted in the floor of the left orbit. IMPRESSION: 1. Elongated styloid processes which may lead to Eagle syndrome. Needs clinical correlation. 2. Normal petrous temporal bones. 3. Normal upper cervical spine. 4. Mild deviation of nasal septum to right, a small concha bullosa of right middle turbinate, mild hypertrophy of bilateral inferior nasal turbinates and mild right ethmoid sinusitis – incidental non-specific findings. If clinically indicated, further evaluation may be done with CT scan of brain (in view of dizziness) and of neck (in view of throat pain) with IV contrast.

Remembering that we are not doctors…while your styloid length does not sound incredibly long [3.4 is over the 2.5-3.0 most doctors have as minimum length] your Styloid looks quite thick compared to the others I’ve seen in imaging. Jules often says it is not necessarily the length but the angle that can cause the problems.

Tonsilloliths = tonsil stones I think they are mineral deposits in your tonsils. My Dr. had me gargle for 3 days to rule those out when I first discovered my styloid poking into my throat.

That is about all I can decipher. I used Google to teach myself the vocabulary I didn’t understand in my report as found it helpful to be self-educated prior to talking to my doctors.

It looks like it confirms that ES is a possible diagnosis- needs clinical correlation just means does the results fit with symptoms etc., which obviously it does.
I googled the ‘small concha bullosa’- that’s to do with your deviated septum (the cartilage imbetween your nostrils) and is quite a common finding, here’s a link:
http://www.newyorkentspecialist.com/nose/what-is-a-concha-bullosa-2

It’s good that there’s nothing to be found with the C1 and C2 vertebrae etc. And also good that the auditory canals and tympanic membranes are all okay, as there are some ear problems which could cause ear pain and dizziness, obviously, so that helps rule anything like that out.

I think this means that the stylo-hyoid ligaments are calcified as well as the styloid processes being elongated… you would have to check that with a doctor- it does all get a bit confusing because the styloid processes are bony processes, and then the stylo-hyoid ligament attaches to the process, but can become calcified itself, but some doctors/ radiographers don’t separate the two, measure them as one length etc. That would be something to ask at a consultation, as if so, the ligaments would need to be removed during surgery too, or you could still have problems. It says that the styloids reach the oropharynx- that means that they reach the middle part of the throat, behind the throat, which average length styloids I don’t think would.
Have you had surgery to repair your left eye socket? (it mentions mesh in the floor? Just being nosey- if that was from a traumatic injury, if your neck was involved too, that a possible cause of ES?)
3.4 cms is longer than Eagle’s original suggestion of ‘average’ length- he classed anything over 2.5 cms as being elongated. And there’s research papers also confirming that the angle can affect ES too- in the Newbies Guide, ES Info section if you’re interested.
So the scan findings do support an ES diagnosis, and it suggests a CT with contrast to look at the blood vessels in the neck, as you have some vascular symptoms (dizziness)- hopefully Mr Axon would order that if you were able to see him.

  • preserved heights means that there’s no problem with the discs between the vertebrae. Some members have had elongated processes on vertebrae as well which can mean even more compression on soft tissues between them and the styloids.
    The tonsilloliths are interesting in that quite a few members seem to have them; that could cause pain and inflammation in your throat.
    So hopefully this should be enough to get you an appt. with Mr Axon- good luck!!

Hi Jules. I have been feeling unwell for a few days so only logged in and seen te repsponses. ES is hard, Let alone the constant feelings of pain and the energy it zaps from you all day, the dizziness not being able to think properly for a few hours in the morning after waking ruins your whole day. Anyway, Jules you really are a wonderful lady doing so much research and helping like this. It all makes sense now. All the signs definately point to ES, especially how you explained the length and other issues in plain English. Such as slow process to eahc this stage finding out my problem. This will give me the final bit of strength to push to go see Mr Axon. Will call his secretary tommorow and on with it… thank you and will keep you all informed.

Thank you- this site was an amazing help to me in getting my surgery… hope things go well for you with Mr Axon. (not sure if you ever get pulsatile tinnitus as well- hearing your heartbeat as a whooshing sound? If so, it’s worth a mention to him as he has a particular interest in that- it was one symptom I had that he picked up on to indicate intracranial hypertension from the styloid processes compressing the jugular veins)

Saw Mr Axon today. He’s ordered more scans with contrast now. He’s suggested as well as neck pain to first check for possible intracranial hypertension due to my symptoms from the Eagle (which he clearly sees on my scans) so will be traveling back to Cambridge a few times now over the next few weeks for proper scans and he mentioned maybe lumber puncture tests with his colleague, with surgery as a possible option once they fully test me out. He said he works together with another specialist here (I forgot his name in my brain fuzzy state) who is a specialist too in Cambridge in this type of thing to get me sorted even if takes them a while to get me rid of this life of misery :slight_smile: At least I feel much better after seeing him and feel that I’m in good hands… will keep you all informed. And thanks again all and especially Jules for recommending Mr Axon.

That’s excellent news! He did mention the lumbar puncture to me, but decided against it when the CT with contrast confirmed that the jugular veins were compressed both sides, he felt that it wasn’t necessary, so hopefully you might not need to have that done too.
I hope that it doesn’t all take too long, let us know when you hear any more! :smile:

Well I went back to Cambridge again and done the contrast scans this week and now awaiting for results to go to the Dr and then see what he says. Radiographer wouldn’t tell me anything. Appointment with dr in a few days to discuss them. Let’s see if compressed, and if so, the ops do seem likely… it’s such a long process but so glad I’m taking care of myself and pushing for the help, something a lot of people have no will or can’t get the energy together to continue fight for and accept the disabilities unfortunately. I for one will fight on to get my life back…

GREAT ATTITUDE, Kingdoz!! I’m so glad to hear things are moving forward for you even if it feels like a snail’s pace.

I guess a few days is not long to wait in the scheme of things, hope that you can get a surgery date soon too.