könnte es möglich sein, dass der Kieferchirurg den linken styoloid vor der Mandel durch die Schleimhaut tastet und ich auch, also es drückt etwas hartes spitzes durch die Schleimhaut und tut auch weh beim drücken?
wie haben sie die Symptome ausgehalten? hatten sie Medikamente dafür?
vielen Dank, dass es diese Seite gibt und sie allen versuchen zu helfen.
Translation:
Could it be possible that the oral surgeon can palpate the left styloid process—located in front of the tonsil—through the mucous membrane, and that I can feel it as well? That is, does something hard and sharp feel like it is pressing through the mucous membrane, and does it hurt when pressed?
How did you cope with the symptoms? Did you take any medication for them?
Thank you so much for creating this site and for trying to help everyone.
Das tut mir auch leid, dass sie das erleben mussten. was hat ihnen geholfen und geht es ihnen besser?
Ihre Symptome sind sehr ähnlich wie meine, ich habe auch Nackenschmerzen und noch Hals und Nase, kaum Geruchs uns Geschmacksinn,alles links
Translation
I am so sorry that you had to go through that. What helped you, and are you feeling better now?
Your symptoms are very similar to mine; I also have neck pain, as well as issues with my throat and nose—hardly any sense of smell or taste—and it’s all on the left side.
I did not find much that helped me personally, although the occasionally glass of red wine would calm the nerve pain for a brief period of time. There are others on the forum who may have suggestions that worked for them. For me, surgery was what finally helped. I had bilateral styloidectomies in December.
Since then I’ve had a significant reduction in swelling and lightheadedness, the brain fog has improved a lot, the tinnitus is mostly gone, and the “underwater/fullness” feeling in my right ear finally stopped about three weeks ago.
Recovery has been slow and definitely not linear, but there has been real improvement over time. I hope you get to the other side of this soon.
I had jaw and tooth pain from the styloid irritating my trigeminal nerve, I had a tooth re-filled where I was getting the pain, but it wasn’t that! There are some medications which can help with nerve pain- I take Amitriptyline which helps, otherwise there are medications like Gabapentin, or Carbamazepine. They can take a few weeks to build up in your system, so don’t always work straight away, and sometimes you need to try different ones to find the right one. Heat or ice can help too, & some members have found lidocaine patches or gel on your neck help- I’m not sure what’s available in Germany though.
As @Isaiah_40_31 says, your doctor is wrong- average length for styloids is 1.5 - 2.5 cms, an average length styloid wouldn’t reach to the C1/ C2 level which yours do, and we know that the angle can be just as important as the length, so your styloids could certainly be the cause of your pain, don’t be fobbed off, you are on the right track!
There’s more info here about medications etc: ES Information- Treatment: Pain Relief, Medications and Alternative Therapies - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
And thank you for translating your posts, as the majority of members speak English on here that’s what we go with, & you’ve certainly made it easier for us!
Hallo Jules und wieder Danke für ihre Unterstützung. Ich hatte Amitriptylin ausprobiert und gar nicht vertragen, ich bekam Herzrasen. Die doofen Symptome machen einfach Angst, ich kann auch nicht mehr scharf sehen, hattet sie das auch? Und haben sie sich operieren lassen? Die Übersetzung passiert glaube ich automatisch, es ist einfach eine weltweit genutzte Seite, die für Menschen die jahrelang leiden, sehr wertvoll ist. Ich hoffe, ich finde einen Arzt, der sich die Bilder anschaut. Es ist dafür sehr wichtig, dass ihr Mut macht, sich nicht abwimmeln zu lassen, DANKE!
Viele Grüße von Sophie
Translation:
Hello Jules, and thanks again for your support. I tried Amitriptyline but couldn’t tolerate it at all; it gave me heart palpitations. These awful symptoms are just plain scary—I can’t even see clearly anymore. Did you experience that as well? And did you end up having surgery? I believe the translation happens automatically; it’s simply a website used worldwide, and it is incredibly valuable for people who have been suffering for years. I really hope I can find a doctor who will take a look at the images. It is so important that you encourage people not to let themselves be brushed off—THANK YOU!
Some doctors you can consider a consult with in your country are
•Dr. Nils Heim & Dr. Warwas, Klinik am Kaiserteich Gmbh Reichsstraße 59, 40217 Düsseldorf
phone: + 49 (0) 211.220 50 22-0 fax: + 49 (0) 211.220 50 22-499 info@klinikamkaiserteich.de
•Dr. Felix Blake, Kurparkallee 4, 23843 Bad Oldesloe (does surgery at Universitätsklinikum Eppendorf, Hamburg), +49-4531-893300, https://www.mkgamkurpark.de
•Dr. Markus Martini at St. Lukas Klinik in Solingen/Germany,
Mund-, Kiefer- und Plastische Gesichtschirurgie, https://www.martini-klinik.de/en/contact - works together with Dr. Sarah Neering
I don’t think any of those doctors do IJV decompression surgeries beyond styloid removal so you may also want to consult with the two doctors below who specialize in IJV decompression surgeries if compression is caused more by C1.
Dr. Aghayev offers free consults. Mr. Axon charges for consults. @IJVman recently posted what Mr. Axon charges but I can’t find the information at the moment.
@IJVman - Thx. Someone recently mentioned what a consult w/ Mr. Axon costs & I thought it was you. No wonder I couldn’t find it in your discussion thread.
Hallo Jesaja, das ist ja so lieb von ihnen, dass sie meine Texte übersetzen lassen. Meine Englischkenntnisse sind nicht gut genug für diese medizinischen Texte, vielen Dank! Und auch danke für die Namen der Ärzte. Dr.Martini kannte ich schon, weil es hier in Deutschland einen Film von einer Frau gibt, die das Eaglesyndrom hatte und von ihm operiert wurde. Der Hinweis von ihnen, dass ich wegen C1 vielleicht einen anderen Arzt brauche ist auch wichtig für mich. Es sieht so aus, als würde auf meiner linken Seite dieJ Jugularvene von C1 und dem styoloid gedrückt. Ich muss jetzt überlegen, wie ich vorgehe.
Viele Grüße von Sophie
Translation:
Hello Jesaja, it is so kind of you to have my texts translated. My English skills aren’t good enough for these medical texts—thank you so much! And thank you, too, for the names of the doctors. I was already familiar with Dr. Martini, as there is a film here in Germany about a woman who had Eagle syndrome and was operated on by him. Your suggestion that I might need a different doctor because of C1 is also very important to me. It appears that, on my left side, the jugular vein is being compressed by C1 and the styloid process. I now need to figure out how to proceed.
I did have palpitations when I took a higher dose of Amitriptyline, it is a known side effect, but it should be a low dose to start with for nerve pain- I take 20mg per day. Can you remember what dose you were taking? There are other medications, so it’s certainly worth trying something else… Sleeping propped up can help sometimes as well, with several pillows or a wedge pillow.
I’m not sure what other symptoms you’re having- do you have head or ear pressure, dizziness or off-balance feelings? If your vision is being affected then it’s important to see an ophthalmologist as if there is compression or the Internal Jugular Vein, this can cause pressure in your head, which can compress the optic nerve and sometimes affect vision. So a good idea to get this checked out- there are simple scans which can be done to look at the back of your eye and if there is pressure on the optic nerve they should be able to see this.
I didn’t have vision problems, but I had head pressure from the IJV compression, this went after surgery. The nerve pain improved too, although I still have it a bit.
Dr Aghayev might be a good option to get an opinion from.
Hallo Jules, ich habe Dr. Martini angeschrieben, das ist erstmal der leichtere Weg. Ich darf nun meine Bilder hinschicken. Denkt ihr ich kann auf die Kompression der Jugularvene aufmerksam machen, es dazuschreiben? Meine Symptome soll ich ihm nennen. Oder schaut er sich die Bilder genau an und entdeckt selbst die Vene? Ich muss auch den Befund vom Radiologe mitschicken, der ja sagt, eaglesyndrom wäre nicht sicher wegen nur 3cm Styloidlänge. Meine Symptome sind nur links, vor allem Schmerzen im Gesicht auch in der Nase und Zahnschmerzen, die Nase ist auch verstopft und ich habe keinen Geruchssinn und es kribbelt in der Nase und Gesicht. Das Gesicht schwillt an und spannt, wenn ich lächel. Schlucken fällt schwer. Etwas drückt durch das Gewebe bei der Mandel und stört beim essen und schlucken. Nackenschmerzen und starke Schmerzen unter dem Ohr. Sehstörungen. Alles ist links vertrocknet und es staut sich der Schleim, der fließt nicht richtig ab. Mein Puls ist immer etwas hoch und ich bekomme oft so eine Schwäche, habe kaum Kraft.Wenn ich das den Ärzten erzähle, glauben sie mir nicht oder sagen atypischer Gesichtsschmerz. Was soll ich davon an Dr. Martini schreiben? Alles oder lieber weniger und das mit der Jugularvene oder nicht? Habt ihr Erfahrungen? Vielen Dank für ihre Hilfe und an alle für die Hilfe. Viele Grüße von Sophie
Translation:
Hello Jules, I’ve written to Dr. Martini—that seems like the easier path to take for now. I’ve been given the go-ahead to send him my images. Do you think I should specifically draw his attention to the compression of the jugular vein—perhaps by adding a note about it? I’m supposed to list my symptoms for him. Or will he examine the images closely enough to spot the issue with the vein himself? I also have to include the radiologist’s report, which states that Eagle Syndrome cannot be definitively diagnosed because the styloid process measures only 3 cm. My symptoms are strictly on the left side—primarily facial pain (including pain inside the nose) and toothaches. My nose is also congested; I’ve lost my sense of smell, and I experience tingling sensations in my nose and face. My face swells and feels tight whenever I smile. Swallowing is difficult. I feel something pressing through the tissue near my tonsil, which interferes with eating and swallowing. I also suffer from neck pain and severe pain just below my ear, as well as visual disturbances. Everything on the left side feels dried out, and mucus seems to be pooling there rather than draining properly. My pulse is consistently a bit elevated, and I frequently experience bouts of weakness, leaving me with very little physical strength. Whenever I describe these symptoms to doctors, they either don’t believe me or simply dismiss it as “atypical facial pain.” How much of this should I include in my message to Dr. Martini? Should I tell him everything, or would it be better to keep it brief—and should I mention the jugular vein issue specifically, or not? Do any of you have experience with this? Thank you so much for your assistance—and thanks to everyone else for your help, too. Best regards, Sophie
Yes. You could say something like, “Even though it’s not noted, I can see I have IJV compression & some of my symptoms align with that diagnosis.” You can’t assume that he’ll notice it on imaging as he may not be looking for it even if it’s obvious.
Diagnosing whether a person has ES or not based on styloid length alone is “old school”. Those in the medical field who are very experienced with ES now recognize that the length isn’t always the key to why styloids are causing symptoms. It can be other physical features of the styloid that are the true problem causers, even in normal length styloids. I received this information in a text today: Dr. Osborne was bemoaning the “length of styloid” as an antiquated method for diagnoses. He said now adays with ct imaging, being able to see what the styloid is doing, it makes much more sense to judge it by looking at imaging and what is going on rather than just measuring the length. We completely agree with this statement on our forum. Doctors who claim to know about ES should also be on that same page now.
I don’t know about Dr. Martini, in particular, but other doctors have been known to become dismissive of the diagnosis being ES or of many of the symptoms not being related to ES (even though we on our forum know they can be) when the symptoms list is too long. I suggest you err on the side of caution & list 3-5 of the symptoms that bother you the most. When you have a consult with him, if it seems like he’s open to hearing more, you can share additional symptoms with him then.
Most of your symptoms can be explained by compression or irritation of the cranial nerves which affect the areas you’ve mentioned: Toothaches & pain inside your nose + congestion & loss of smell are coming from your trigeminal nerve. Tingling sensations in your nose & face can be from both the trigeminal & facial nerves. Swelling when you smile could be related to facial nerve irritation. Difficulty swallowing & the feeling of something pressing near your tonsil (could be your styloid) is usually related to glossopharyngeal nerve irritation which affects throat/swallowing, soft palate, & back of the tongue function. The vagus nerve also affects swallowing, mucous production & pulse/heart rate + blood pressure which can help explain bouts of weakness (caused by low blood pressure - I had this problem). Pain below your ear & in your neck can be from the spinal accessory nerve being irritated. Visual changes can be from intracranial hypertension/IJV compression or ICA compression, but sometimes also from the facial/trigeminal nerves depending on which branches of each are affected.
I agree with @Isaiah_40_31 's advice about how to approach your list of symptoms… So list the more well known ones, like difficulty swallowing, something in your throat which affects eating, face/ jaw pain, neck and ear pain, as well as the visual disturbances. Personally I’d leave out about feeling mucous dried out, doctors might not understand how the trigeminal nerve can be affected, & how sinuses etc do seem to be affected by ES…
Vielen Dank Jesaja, das sind alles wichtige Informationen, auch die neuen Erkenntnisse über die Länge der Styloide. Ich denke auch, dass es besser ist weniger zu schreiben, damit es auch gelesen wird. Ich werde das mit der Vene als Frage stellen, um darauf aufmerksam zu machen. Und dann muss ich hoffen, dass sie in den Bildern eine Ursache finden. Vor allem möchte ich auch wissen, ob der Styloid durch das Gewebe bei der Mandel drückt. Ich finde es wirklich unglaublich, dass ihr so vielen Betroffenen helfen könnt und euch mit den Bildern so gut auskennt. Denkst du, dass die Ärzte, die sich die CT Bilder anschauen, diese auch in 3D umwandeln?
Viele Grüße von Sophie
Translation:
Thank you very much, Jesaja; this is all important information—including the new insights regarding the length of the styloids. I also agree that it is better to write less so that the text actually gets read. I will specifically raise the issue regarding the vein as a question to draw attention to it. And then I just have to hope that they find a cause in the images. Above all, I also want to know whether the styloid is pressing against the tissue near the tonsil. I find it truly incredible that you are able to help so many sufferers and that you are so knowledgeable about interpreting these images. Do you think the doctors examining the CT scans will also convert them into 3D?
Vielen Dank auch an dich Jules, ja es ist besser wenn ich die Schleim und Nasenhöhlensymptome nicht erwähne. Auch, wie bei dir ist es oft der letzte Backenzahn oben, der mir die Schmerzen bereitet, die dann in Ohr und Nase ziehen. Aber ich werde, wie von dir geraten eher die typischen Eaglesymptome, wie Schluckbeschwerden, Nacken und Ohrenprobleme angeben. Ich bin aber froh, dass hier im Forum alle Symptome ernst genommen werden.
Viele Grüße von Sophie
Translation:
Thanks to you as well, Jules. Yes, it is better if I don’t mention the mucous and nasal cavity symptoms. Also—just like with you—it is often the last upper molar that causes me pain, which then radiates into my ear and nose. However, as you advised, I will instead focus on the typical symptoms of Eagle Syndrome, such as difficulty swallowing, and neck and ear problems. I am glad, though, that here in this forum, all symptoms are taken seriously.
@SophieM This is very similar to the nerve pain distribution I experience in my face as well. I’m sorry you’re dealing with this symptom in addition to everything else.
You may need to ask the doctor if he is able to convert your images to 3D & show them to you that way. Many doctors now have computer software that does 3D conversion, but not all of them. Another option is to ask the radiology clinic where you had your CT done if they can put your imaging in 3D format. Sometimes the radiology clinics are able to do it.
@Jules & I have been on this forum since 2014 so we have both experienced ES & have read hundreds of posts now & looked at many CT scan images that people have posted. We’ve learned how to identify the important things in CT scans from others who were good at labeling images. We’re both thankful to be able to help you.
