I’m rather new to this site (glad I found it - lots of interesting reading), but I’m not diagnosed with ES.
I felt styloid bone grow like I was getting extra wisdom tooth (swelling and pain), in month after fall on head (I thought I could fly :)), then I felt and could touch it in my throat as source of pain.
Otorhinolaryngologist said it’s not possible my styloid grown, because both are normal in size (he measured them on orthopan scan – 27,1 mm and 23,6 mm) and can’t cause symptoms I have. He could also touch one in my throat, but doesn’t meet criteria for ES. I think main reason is because I have most symptoms on both sides.
My symptoms are dizziness, tinnitus (right side goes by Morse code (haven’t decoded it yet, so I don’t know what the secret message is) + constant laud hissing, left is mostly just constant laud hissing and some hearing loss from fall), headaches, brain fog, neck pain, vision problems (double vision, visual field defect, macular edema, damaged optic nerve, nystagmus…), voice changes (I run out of voice after few too much sentences), difficulty swallowing when drinking with head up, pressure and pain in ears, …
Now I’m thinking of breaking off this thing by myself and see if anything improves.
You have a wonderful since of humor and I admire you for it! haha
I recently found out I have 6+ cm bilateral calcified styloid processes (say that three times). I also had that feeling like I was growing an extra wisdom tooth! and it was right after I had my wisdom teeth taken out so it was very confusing, like, did they forget one?
I say see an ENT and get a CT scan done with contrast and have them let you put a sticker on the spot of your throat that you can feel it most. That is what I did and that is how I finally got diagnosed!!
It’s almost like you read my mind with the list of symptoms
I agree! You have a great sense of humor! Love your post title & your morse code comment.
Comments on your styloids: Your left one is very thick at the top, pointy & somewhat angled toward your jaw bone. Your right one looks elongated to me, & it’s also quite pointy & angled. Your symptoms sound like you could have some vascular compression - the dizziness, headaches, brain fog, visual changes & tinnitus can all be indicative of that. The angle of the styloids could be causing those symptoms if they compress your jugular veins when your head is in certain positions. The vocal changes & difficulty swallowing may be caused by your vagus nerve being irritated by the styloids.
Styloids don’t necessarily have to be elongated to cause symptoms. The thickness, angle, how pointed, twisted, etc., the styloids are can cause ES symptoms even when the styloids are normal length.
The best I can suggest is that you try to get a second opinion from another Otolaryngologist (ENT) doctor. Some of our members have found that a vascular surgeon, head & neck, maxillofacial or neurosurgeon diagnosed them when the ENT they saw did not. It can be very difficult to find someone who actually knows about ES but “leaving no stone unturned” (an American phrase meaning try every option) is your best option. I wish I could offer you other help.
I second what the others have said, a great sense of humour! You gotta laugh or you’d probably cry too much…
I agree too that the styloids look a bit long, the ends are pointed which can definitely cause symptoms, & I’d think that if they can be felt by the ENT then they are longer than they should be! Also the measurements from scans isn’t always accurate, so they could be longer than measured. If styloids are at an angle, & wide at the top as Isaiah pointed out, then they can compress nerves &/ or blood vessels right where the nerves & blood vessels exit the base of the skull. ( The skull has a partial base to it at the back, & there are small exit holes there for nerves & blood vessels, it’s a very cramped space, so as the styloids are close to one of these holes, they can cause problems.)
As Asummhannah says, a CT with contrast would show if there’s vascular symptoms, especially as your symptoms do sound possibly vascular. If you’re able to with your health care system? I’d suggest looking for a Skull Base Surgeon/ Otolaryngologist, as they operate in the area the styloids are, & try to get a referral, or otherwise try a Head & Neck Cancer surgeon, or a Head & Neck Neurovascular surgeon.
But definitely do not try snapping it yourself- you could be left with very loose sharp pieces which could potentially do lots of damage!
I hope that you can find a doctor to help, keep the sense of humour up & sending you a hug
Hi Lorem. My husband, Mark, has the exact symptoms you have. He also saw a doc about possible ES and was told he did not meet the criteria. He has it on both sides of his face as well. He has endured this since at 13!!! He says he does not remember any head trauma, but then he tells stories about riding horses and getting bucked off with a foot stuck in the stirrup and his head hitting fence posts as he was dragged. So I bet he has had plenty of “trauma” that he did not consider trauma at the time LOL.
Has your husband gotten a consult with one of the more experienced ES doctors on our forum? Both Dr. Samji in CA, & Dr. Cognetti in PA, do video consults. You would need to contact their offices to set up an appointment (w/ one or the other or both) & send in your husband’s CT scan along w/ the radiology report. It would be sooo worthwhile doing this. Insurance will often pay part of all of the cost of a second opinion consult, but check to make sure as these can cost $500-600.
Snapping them off yourself…definitely not recommended neither was a piece of string attached to a door handle then slamming the door to pull a loose tooth out… Be Warned
Hello! We definitely need some humor around here so thanks for joining! I did notice something, as an artist, the angle of the picture you posted is angling slightly downward. It is not a straight on shot so I would not trust that styloid measurement. You have the exact same symptoms I did with the bone protruding up through Underneath your tonsil. I finally had to have my ENT stick his gloved hand down my throat during Covid so he could actually feel what I was feeling. The radiologist report that he received before our appointment said that there was no tumors or anything like that that would cause me such a pain. Of course the radiologist missed the elongated styloid diagnosis as they mostly always do. Mine were only 4 mm and 3.7 mm respectively. My smaller one was causing me all kinds of crazy symptoms just like you were posting. You did bring something to my attention. I always had this weird tinnitus thing in my right ear and it sounded like a fax machine when you accidentally call one on the telephone. And it did this Morse code type of thing! That is one thing I forgot to tell my doctor because I’ve had this for over 10 years and I didn’t know that that symptom would have been related because I was only diagnosed with Eagle Syndrome two years ago when it started doing crazy things to my neck, burning pains down my hands, earaches and then of course the bone poking through to my tonsil. I would definitely suspect that you have it. I also am not believing that it is as rare as the doctors say it is. I think it’s very much under diagnosed. I also have degenerative disc disease which causes quite a few of the same symptoms. But if I do not have a disc in active herniation my symptoms still would not be Relieved. I just got my right Styloid taken out about 16 days ago and every one of my symptoms is gone. I’m going to have my left one done soon within a couple months. A word of advice…That’s something to think about if you are doing both of them at different times, you want to get them done in the same year or cycle with your deductible so you’re not paying two deductibles.Thank you for your insights!
Thank you all for good advices and insights and hug. This site is really informative and supportive.
Otolaryngologist I already saw is Skull Base Surgeon / Otolaryngologist, and apparently best one (so I heard… and he at least didn’t had to do google search about styloids… ).
I can’t get CT scan done without a reason and doctors referral, so not much else I can do. I asked for second opinion, but I don’t expect much from that either.
Snapping them off by myself will definitely be my last option, since I’m not quite sure that is reason for my symptoms, besides… Eagles are endangered species in my country, and is illegal to disturb their habitat.
Morse code! That’s how my tinnitus had started long time ago. Initially it would go away after lying down with some pshhhh feeling, but eventually turned into the hissing sound as if garden water hose was pinched and spraying water with pressure…
You continue to make me laugh. I think some eagles are also endangered in our country, too.
I’m sorry your options for a second opinion are not good and that the
most experienced ENT surgeon is unwilling to help you. Would you be able to travel to another country to get help if your symptoms become bad enough?
Isaiah, please, don’t scare me! How much worse can it be???
If I’m not diagnosed with ES, I don’t think there is country where they would remove styloids as aesthetical surgery… Maybe in India, but that is too far even for Eagles.
So, I have done CT scan, but radiologist didn’t want to do scan with contrast. She said it’s not needed… Report is… I already knew everything she wrote, and also told her before scan.
Both styloid tips of the mastoid are relatively long, the right one is longer and reaches approximately the height of the C2 corpus. Calcination with a diameter of 4 mm is in the lower part of the right tonsillar fossa.
I used DroidRender - 3D DICOM viewer (free on Google Play) on Android to see CT scans in 3D. Made some screenshots too. Also measured longer one, but not sure its right way to measure these things.
(Posting for info as another (easy) way to see CT/MRI scans in 3D.)
Ouch; they are both long, but especially the right! Quite a point on them too…& fairly wide at the top.
I don’t know what the health care system is in your country, but would it be possible to get referred to a skull base surgeon, or a head & neck cancer or vascular surgeon? They do operate in the area of the styloids…
Great images! Job well done!! Those are some nasty neck fangs you’ve got!! WOW! You definitely have ES so I can declare your skull based ENT doc needs to study up on topics he should be familiar with based on the area of the body where he works.
I totally agree with Jules - your styloids are very thick at the top & the right one is quite long, the left a bit less & both are pretty pointed at the tip. Though I am not a doctor, I have observed over time that among our members, there’s a greater possibility of IJV compression when the styloids are very thick at the skull base due to the transverse process of C-1 occupying the same space. That is NOT to say you have vascular compression, but if you do have symptoms pointing to that problem, my explanation could be the reason.
In my opinion, you should take your 3D images back to the doctor you saw initially & have a deeper discussion regarding the removal of the styloids. We have links to research papers here that you can print to take with you that describe symptoms, surgery & outcome for the patient(s) studied. Additionally, there are videos of both the intraoral & external approaches to ES surgery on YouTube that your doctor (& you, if you dare ). If you can’t find them, I’ll send you links.
BTW - My son had to give me a tutorial about Lorem Ipsum. I was a bit embarrassed that I got this far in life & was unfamiliar with it . (Thank goodness for smart kids.)
Jules, I already saw such surgeon (well, I went in without my glasses, so I saw two of them at once!!!) – one he said my styloids don’t meet criteria for ES. I have appointment with another doctor for second opinion in September. If he doesn’t search styloids on Google instead in my throat (I developed low criteria ), and he also think they can’t cause my symptoms, I guess I will just have to believe them.
So, wearing my moderator hat, I have to tell you not to settle with “no” for an answer to ES being the cause of your symptoms. Jules wrote the posts in the links below which have excellent information about ES backed up by links to research papers. If your doctors aren’t fluent in English, I hope they can use Google Translate to read what she wrote. This is good ES educational information & will hopefully expand their understanding.
Doctors who don’t know much about ES don’t seem to want to learn about it. It’s easier to turn a patient away than to do the research to self educate about a health issue that has also been called the Suicide Syndrome (because symptoms can be so extreme that seems like the only “out”). There are people who die from ES (strokes from erosion of the internal carotid artery) though this is extremely rare.
If you continue to run into a “brick wall” as you try to get help, your alternative would be to ask for a prescription for nerve pain meds to help reduce the symptoms. These can take some weeks to start working, & the dose can require adjustment to find what works best for the patient. There are two categories of nerve pain meds - anti-seizure & anti-depression. Neurontin (Gabapentin) & Amitriptyline are two that are often mentioned on this forum but there are multitudes of others. If one in a given drug family doesn’t work, another related one might. It can take some trial & error to find the right one that works w/o causing significant side effects.
I do love your sense of humour- good you have it, you’re going to need it by the sounds of it! I second what Isaiah says, if you can print off research articles, especially ones which mention symptoms similar to yours, it might help…
Update…
I tried to convince the doctors that these bones were the cause of my symptoms, but without success. I was diagnosed with ataxia instead. I give up.
I am really sorry to hear how discouraged you are. Our battle cry here is NEVER GIVE UP!!
Have you shared any ES research papers with the doctors in question especially any where symptoms similar to yours are mentioned? There are links under the General category on our main page & more in the Newbies Guide under the Welcome category. There is also a new section on the homepage called Patient Self Advocacy that has really helpful info which might support you as you proceed in looking for help.
Things you can ask for to help you be more comfy until you find someone willing to do ES surgery for you are an ultrasound guided injection of lidocaine & cortisone. This is usually given in the tonsillar area of the throat & can help relieve pain/symptoms for a few days to a few months. Nerve pain medicines such as Gabapentin, Amitriptyline & Carbamazepine can help reduce symptoms significantly as well.
We are here for you if you need “a shoulder to cry on” or just need to vent. Please let us support you during this really tough time.
Hi Lorem Ipsum!
Jugular Outlet Syndrome can absolutely cause ataxia and tremors! Please don‘t give up. At this point I‘d absolutely recommend to consult KJETIL Larson to have a look at your Scans. Especially since you won‘t have to wait very long for a Skype appointment…
).
). If you can’t find them, I’ll send you links.
. (Thank goodness for smart kids.)
