I thought I could fly :)

You continue to make me laugh. I think some eagles are also endangered in our country, too. :eagle:

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?

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Isaiah, please, don’t scare me! How much worse can it be??? :blush:

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…

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Hey Lorem_Ipsum -

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 :wink:). 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 :crazy_face:. (Thank goodness for smart kids.)

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Lorem ipsum dolor sit amet… :blush:

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 :blush:), and he also think they can’t cause my symptoms, I guess I will just have to believe them.

I appreciated your “nod” to the Lorem ipsum text. :upside_down_face:

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.

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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…

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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.

Hi Lorem_Ipsum,

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. :heart:

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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…

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I have ataxia and tremors and have been diagnosed with vascular eagles. These symptoms aren’t talked about and aren’t largely recognised since most doctors believe only the throat, ears and neck are affected. A lot of doctors don’t even believe compressed jugular veins are a problem at all.

I don’t understand how you don’t meet the criteria for eagles? Your styloids are very long and you also have symptoms. Even small styloids can cause extreme symptoms so the length shouldn’t define whether someone has eagles or not.

You just need to find the right surgeon to analyse your scans and to listen to your symptoms.

Maybe being turned down by these doctors is a blessing, because you wouldn’t want to be in their incompetent hands anyway.

Keep going. You’ll get there.

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Thank you all for encouraging words!
I just spent 10 days at the neurology clinic where all sorts of tests were done. On the last day, I managed to convince the neurologist to do another contrast-enhanced CT to look at the styloids too. I also showed her a video I found on this page describing most of my symptoms. CT did not show any abnormalities, but I noticed at home that they did CT angiography and not venography …
I didn’t knew tremors could be also because styloids.

Did you get a lumbar puncture with measurement of the CSF- Pressure?

I had lumbar puncture, but not sure about measurement… everything was normal, I was told.

I feel for you- such obviously elongated styloids, with the symptoms of ES & they won’t diagnose you?! Would you be able to travel for surgery elsewhere in Europe? If so, maybe you could email or ring doctors on the list to see if anyone would help you? We do also have names for doctors elsewhere in Europe who’ve written research papers who might help? & @Eaglefatigue’s suggestion of trying Kjetil Larson to evaluate your scans might be an idea.
Sending you a hug :hugs:

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I can’t travel for now, and my English is not good enough for Skype appointment :slight_smile: Thanks for the hug! :hugs: :hugs:
I got my last CT scans with contrast. Left side looks normal to me, but right one… not sure. Does this look like anything could be compressed?



It does look like there’s compression, yes, by the C1 process & the styloid. Your C1 vertebrae looks a little off kilter too…others on here are more knowledgeable abut the anatomy so hopefully they can contribute too!

Thanks Jules!
I’ve already found a surgeon who can remove this stupid bone. :clap: It will cost around € 3,000 for one side.
Just checking here if anything wrong is seen on this scans, othervise he wont do it either … I guess.

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I am so thrilled that you’ve found someone who will remove your styloid!! That is AMAZING NEWS!! Your English seems fine as you communicate well here, but perhaps you’re using Google translate or some other translation devise.

I hope whomever you’ve found to do your surgery is someone you can communicate with well. Your situation looks pretty straight forward to me based on the images you posted yesterday. Your styloid looks long & pointed! Your atlas does look elevated on the left side, but that could have to do w/ your head position or from the fall onto your head all those years ago, it is possible the fall slightly changed the position of your atlas at that time. I don’t think that’s a problem that should prevent ES surgery though.

Please let us know how everything goes once you have your operation. :hugs:

Great that you’ve found a surgeon!