I just learned of ES last week… which is going to sound odd given what I am about to say. June ‘21 I had my Tonsils removed solely because my L styloid was calcified and poking 2mm past my tonsil (did not perforate but that was the concern). No other tonsil issues historically such as strep, tonsillitis (no other reason for bilateral tonsillectomy. ES was not mentioned to me at the time except in one sentence to say “long styloid but not ES”. Flash forward to March ‘22 I started experiencing Neurological symptoms. First it was pulsating tinnitus in L ear, then pain like a sheet of metal through my head behind my ear, then hypertension headaches that were almost constant over time, then clogged left ear, and feeling like I was under water/water in my ear (ENT said hearing is perfect/ear canal clear), sent me to neurology, neurology did head mri and send me to ophthalmology (not optic nerve)… this has been getting so much worse to the point that my face has started tingling on the left side and the pain gets so bad that the only thing that helps is muscle relaxers and ice. I can’t work right now because my job required that I am on-call 24/7 for my patients and I need to make calls for people in very high risk situations and I can’t think clearly when I am in so much pain and crisis myself. I feel like this has to be ES related because the original doctor just cut the tip off and my tonsils and sewed me back up and all my symptoms match things I have been reading about on here and articles about the problems with the intra oral approach without CT on an elongated and calcified styloid. Am I going crazy or could I be right about this? I have calls into a doc in Philly and UNC because there doesn’t seem to be a really good option in Maryland near me but ANY are greatly appreciated!!!
Your symptoms do match those of ES, so no, you’re not crazy, & some sound like you might have vascular ES- clogged ear feeling, brain fog, headaches, pulsatile tinnitus etc. There’s info about vascular ES in the Newbies Guide Section if you’ve not seen it, & the different symptoms. Quite often the blood vessels can get compressed closer to the base of the skull, so it may well be that not enough of the styloid was removed. It sounds like you could have nerve irritation too- either the facial nerve or the trigeminal nerve can commonly be affected. There are medications which can help with nerve pain, so might be worth trying something? Again, info in the Newbies Guide.
If you can get a CT that would be helpful to see what’s going on & how much was removed- if the styloid was poking into your tonsil are then it sounds like it was pretty angled too, which can cause symptoms as well as the length.
Good that you’re pursuing referrals to other experienced doctors, I hope that you can get some answers soon!
Hi @SamiA -
Jules has given you great advice. If you can afford to travel, it would be worthwhile consulting with both doctors you mentioned. The Philly doctor does do video consults but the UNC doctor requires an in person first appt. I had two opinions & was so glad I did as the second doctor I met with had a
much better strategy for surgery than the does’t doctor (who diagnosed me).
Thank you so much for your thoughts. Do either of you have any thoughts on what are the best tests to be able to see what is going on at the base of the skull. I have been with a neurologist and ophthalmologist because they thought the symptoms were increased inter-cranial pressure, possible stroke, lots of other stuff (no one thought it was related to the surgery I had a year ago to cut off the tip of my styloid process in my left tonsil) so all the tests they ordered were things like brain MRI, brain MRV, other tests that I just don’t think showed the styloid that was left behind when the ENT cut the tip off. So now I have an appointment with Dr. Hackman but it is not until the end of November and I am so debilitated at the moment that I can’t work so I want to see what other images I can get done to get him all the correct information to move the process along but none of my doctors here seem to have any clue what I am talking about. I honestly feel a bit hopeless because my job means so much to me and I HATE not being able to work. I hate that my brain doesn’t work like I am used to it working and I hate feeling miserable off and on all day. Your thoughts have been so helpful and this website has been the biggest blessing through all of this.
@SamiA - you need a CT scan that includes skull base and cervical spine. If you can’t find a doctor to order it, dentists and some Upper Cervical Chiropractors have 3D X-ray machines that provide high enough resolution to see how long your styloids are. I had to pay extra for an outside radiologist to write a report specifying the length of my styloids (after an orthodontist found them), which I used to get an appointment with the first surgeon I used. You can see styloids on MRI if you are looking really hard for them, but it is very hard to measure them on MRI. Some chiropractors will write orders for CT scans, but insurance may not pay for it. There are local hospitals here in Florida that offer self pay CTs for a very reasonable amount of money.
I recommend a Ct scan that covers from skull base to hyoid bone as the stylohyoid ligaments can calcify from the hyoid end as well as from the styloids so it’s important to hve that whole picture. Since you have vascular compression symptoms, it would be good to get a CT w/ contrast & if you can get one, a dynamic CT w/ contrast as that would show which head position(s) cause your compression to be the worst. I suspect you have IJV compression which causes intracranial hypertension. ICA (internal carotid artery) compression is the one we worry about causing strokes. Though some symptoms are the same as with IJV compression there are others that are very different. You can use the magnifying glass icon to look for info about both scenarios on our forum.