I want to say hello to everybody here and I’m so glas, that I found this Website!!! It helped me through my darkest hours, and there were a few in the last months! Unfortunately my english is not so great, I live in Germany…but I hope, you can understand, what I’m writing I’m 41 years old and my 3D-CT was this year in july. On the left side it’s 5 cm and the other one is 3,5 cm long, but it’s still growing, I can feel it…the left one I can already see in my mouth…I have no problems in turning my head, but there is burning pain in my throat and the tounge burns too. I sometimes can’t hear so good. It’s crackling in my ear and suddenly I cant hear anything, but only for a few seconds. The Tinnitus is there since 2015. I also have pain in my neck and my teeth, my mandibular is already postponed…it was a long way to find out, whats wrong in my mouth and my dentist extracted a tooth
, which wasn’t necessary at least. The funny thing is, that I remember now, that my father had the same problem. He also had ES and didn’t get a surgery, the doctors didn’t know very much about this problem to his time. I still can’t believe, that the same rare syndrom happens twice in a family!!! Is there anyone, who has got a family member with the same problem? It’s quite interesting for me, because of my 2 kids. It would be very bad, if they get the same problems, when they’re older… At the moment I can’t choose the surgery, my husband became very ill. And I don’t wanna take the risks of a surgery, when there are 2 little kids…so I keep going and try to handle the situation as best as I can…
I wish you all a beautiful day and would be glad to read your answers
Your English is brilliant! I think that there have been a couple of discussions about this running in families- I’m sure that Isaiah40_31 might have had a family member with problems, so hopefully she’ll chip in. Because it’s thought to be so arre, there’s not much awareness about it now, let alone years ago for our parents’ generation so it could be that some had it but were never diagnosed? I guess like some people are taller or have longer legs, which could be inherited, some styloid processes could be longer & so cause problems… my son has a few symptoms at times, not enough to need to get it checked yet though thankfully. I have a twin sister though who hasn’t had problems, so I don’t know. There’s info in the Newbies Guide about possible causes.
I hope that your husband gets better soon- it must be really tough dealing with pain yourself , looking after hime & your children. Sending you a hug!
Here’s a quote from the Newbies Guide into causes of ES : ‘Carmada et al also suggested that symptoms appearing earlier in life may be due to developmental anomaly of ossified ligaments or elongated processes with no history of trauma. This might explain a hereditary element to ES which a few members have noticed.’
Ah ok, thank you very much Jules. So I have to take care, that my kids know this problem. My son already asked me, whats wrong with me, because I always look at my tounge. I’m still scared about the pain and search for changes, but it looks healthy. I must accept, that there is something, that causes different sorts of pain. It’s not easy. But I told my son, what it is. So I hope, he’s remembering when he’s older and doesn’t have to search for reasons as long as I did…
oh and I wonder, if the cold season makes the complaints worse. In the summer I felt much better than now. I can’t drink anything cold. So do I have a problem with the circulation in my mouth? A warm coffee is fine, but everything cold is very very painful! So many questions…
And many thanks for the hug Jules!!!
Hi cookie!
So glad you’ve been diagnosed so you don’t have to wonder what is causing your symptoms any longer. I’m also sorry your husband is ill. I will pray for a full recovery for him. I agree w/ Jules - how hard to be taking care of 4 people (your husband, kids & self) when you don’t feel good. Hopefully you’ll be able to have surgery one day which will help your symptoms go away. The numbness/burning in your tongue & throat & crackling/hearing loss in your ear & all your other symptoms are from nerves being irritated by your elongated styloids. Once the pressure is off the nerves, they usually fully recover & all those annoying things will stop.
There are cases where ES runs in families. There was a gal on this forum a couple of years ago who was diagnosed w/ ES & then 2 or 3 of her children were also diagnosed with it. I seem to recall at least one other case where there was more than 1 person in the immediate family who had ES. I was told my first cousin had it but when I asked him about it, he’d said he’d never heard of it. I did wonder if my father had it though. He was never diagnosed but late in his life had some unexplained heart & vestibular problems that could have been symptoms of ES. Sadly, we didn’t think about it till after he died (from other causes).
ES is often caused by a traumatic injury like whiplash of the neck, head injury, even tonsillectomy where the residual scar tissue creates internal stress that causes the stylohyoid ligaments to calcify or encourages extra styloid process growth. I believe my ES was the result of injury as I’ve had major head inury, whiplash & a tonsillectomy. No one knows the cause(s) for sure though.
The cold weather can absolutely cause your symptoms to flare there have been several people who have reported that cold especially made everything worse. Stick with the warm coffee, wear a scarf covering your ears, nose & mouth when you’re outside in the cold & hopefully you won’t be so affected by it.
We are here to support you & give you virtual hugs as needed!
Thank you very much.It’s amazing, how lovely people you are! I feel less alone with my Situation, it helps a lot to sort the symtoms! Many thanks!!!
My husband got told in September, that his kidneys (funny word in English, in Germany it is the word for little beans!) have become smaller, they work only for 6%. He has a Autoimmune disease, that ruined them, and no-one realized it, until it was too late…he has to start with dialyse in the next weeks/months…so thats a fact, that won’t go away, there will be many years, until I dare to think about a surgery…
yes, I can’t ask my father too, he died in 2007…but in the hospitel, where he went 17 years before, is a central archive. I want to ask there, if they noted the lenghth of his ES. I would like to know, how far they can grow, and my father became 86 years old WITH his ES. That would be a little preview of what may come, when I don’t get a surgery…
Hi! I’m from Germany too and just want to wish you all the best!
If you ever want to consult other doctors about Eagle’s Syndrome, here are the doctors in Germany I’ve found so far who have already diagnosed and operated Eagle:
I had a conversation about a surgery yet with Prof. Seidel in Berlin (UKB), The day bevor the surgery should start, we got the news for my husband. So I took it as a sign to wait. It was all a little bit too much
Is it right, that the internal surgery is preferred in Germany? Nobody told me until now, that it’s possible to do it from the outside! Is there more risk? I think, they can cut more off from outside?!
Oh and for all, who have problems like me with irritated nerves: I make myself injections with high dosed vitamine B12. On The next day it’s a little bit better. You Can buy it for free and its not expensive. It eases a little bit the burning pain in the mouth
As far as I know, most surgeons in Germany prefer the external approach, but both methods have their pros and cons.
Personally, if I have to undergo surgery, I’d prefer the external approach, it offers better visibility and just seems less risky for me. The scar isn’t much of a problem either
I hope, everyone has wonderful christmas holidays!!!
Michael, I agree. I wouldn’t care, if there was a scar…but recently I saw statistics, when there was a brain impact during or just after the surgery at 2 of 11 surgeries in a certain hospital, that made this from the outside/extraorale. It was quite shocking to me!
A big question I have is: How long can such an ES grow? And where is it supposed to grow? I can’t imagine, where there shall be enough space in my throat!!! I can already see it there, when I push away my tounge. Where shall it still grow? Can The skin expend more and more??? Do You understand, what I mean?
I’m so glad that you are finding this community helpful. You are right: the people here are very nice, especially Jules, who is one of the best moderators on the Ben’s Friends network. We have over thirty communities, and more are added each year. Please click on the blue link and see whether there is a community for your husband to join (or you to join as his partner).
It seems a bit odd, doesn’t it, for you to be conversing with Michael in English when you are both German-speaking. Thank you, though, for doing that: we ask that posts be in English so that everyone can join in on the conversation. Did you know, though, that translate.google.com is an excellent tool? These days it gives remarkably good translations. On some of our boards, we have people who write their post in their own language, and then put it through translate.google.com. They post the English for everyone to read, and below it they post the original in their native language. That way, everybody can join in.
Don’t forget either that you can send private messages to other members too: just click on their avatar (yours is the C in the orange dot) and you will see a “message” icon. Click on that, and you can send a private message.
We’re glad that you joined us, Cookie, and we’re happy that you’re glad too.
Thank you Seenie!
Cookie- I’m really sorry to hear about your husband- that must be very hard to deal with, when you have young children & are not feeling great yourself. I hope that the dialysis goes smoothly for him…
There’s some info about the pros & cons of intra-oral/ external surgery for ES in the Newbies Guide; with external surgery they can see the styloid processes better, so can remove more of them & also the stylo-hyoid ligaments better if they’re calcified too. There’s also less risk of infection, but a lot of members have had successful surgeries with the intra-oral approach. I’ve never heard that there’s more risk of brain damage with external, in fact from what I’ve read there seems to be less risk of causing a stroke or bleed etc with external surgery because the blood vessels are more visible, so maybe it’s a particular problem with that hospital and their surgeons? That said, there is a risk with ES surgery, so it’s not a decision to be taken lightly; most people decide to have surgery when the pain or trouble eating gets so bad their life is badly affected.
Obviously you’re not in a position to have surgery at the moment, but some members have had good results with steroid and/ or lidocaine injections into the area, which is sometimes done by an ENT doctor under CT. The results have varied but some members have had a good pain reduction for a while, so it might be something for you to look into? It doesn’t cure ES, but can help for a while- you can only have it done a few times.
As for how long they grow- I have seen one research paper where a styloid was removed at 14cms long!! And someone also posted a picture a while back of a person (not a member, they found the picture online) who’s styloid processes have gone through the back of their mouth and could be seen like little tusks inside their mouth! That is very rare though!! Sometimes symptoms can come & go, so you may find that they lessen & are bearable, & some members find pain relief which helps, so they decide not to have surgery.
Also you mentioned about being worse in the cold- I had a lot of nerve pain which was worse in cold weather, so I would sit with a hot water bottle on my face & neck which helped. Nerve pain medications can help too, like Lyrica, Gabapentin, Nortriptyline/ Amitriptyline; it might be worth discussions that with your doctor if you’ve not tried anything.
Best wishes to you & your hubby…
Michael, our site, for legal reasons, does not allow named negative reports. (See our Site Etiquette:
Practitioner Reviews: We welcome and encourage personal comment or reviews of hospitals or doctors (by name, specialty and location) with whom you have had a positive experience or outcome. To keep our community supportive and positive, and due to fairness, legal and other concerns, we cannot support negative reviews of practitioners by name in the public forums of the site.
There’s nothing to stop Cookie from passing that information on by private message, though.
Jules, many thanks for your words. A warm bottle is a great idea! I only used pain-killing cream/ointment for the tounge or the whole mouth like the one, you can take when babies get their first teeth it helped to forget the pain for a short time… Especially the area, where the tooth was extracted, is very irritated. It always feels like there’s something that doesn’t belong there. I did think about medication for the nerves, but I have to find a special doctor for it…i have also an autoimmune disease, that makes a Medikation quite difficult. I have ITP, that means I have most of the time fewer platelets than normal. I have antibodies directed against blood clotting. And every pain-killer has influence on that it’s horrible!
Have a nice das und greetings from the cold cold Germany!!!
Your last comment made me laugh! I never thought about auto-correction being a problem in other countries! It sure is a pain in the neck for me in the US!!
I want to say, too, that I’m so sorry for your frustrating & sad situation with your health & your husband’s difficulties. I do hope you can find support for both of you through Ben’s Friends and am hopeful you will find treatment(s) for your ES symptoms that enable you to wait awhile to have surgery.
I did find it interesting that there is information out there about brain damage from ES surgery. That seems very odd to me, but I suppose anytime one goes under anesthesia that’s a possible side-effect & the trouble may arise more from the anesthesia than the ES surgery itself. I know I’m speaking a bit out of turn since I haven’t read the information personally.
Praying for you & hoping you have a very Happy & Blessed New Year!
I still have to ask something…the place, where the tooth was extracted, is in the upper jaw left the last tooth…it’s also the left side, where the ES is 5 cm long. But I’m worried quite a lot, that I could have another problem. The place, where the tooth was, feels completely strange. And in that corner up there the oral mucosal membrane feels like there is a foreign body in it, but I can’t see anything. The doctors have scaned it with a Finger, but said, there’s nothing. But I’ve only had a CT , wich shows the bones not the soft tissue. And the fear, that there could grow some kind of cancer, drives me completely crazy!!! I know that foreign body feeling from my throat, where the ES comes out, but there’s some distance between the both places. It’s more the TMJ now!!! Is that all Eagle, is it all the same problem or should I insist to get a MRI??? It’s a terrible situation…
I’m 41 years old and my 3D-CT was this year in july. On the left side it’s 5 cm and the other one is 3,5 cm long, but it’s still growing, I can feel it…the left one I can already see in my mouth…I have no problems in turning my head, but there is burning pain in my throat and the tounge burns too. I sometimes can’t hear so good. It’s crackling in my ear and suddenly I cant hear anything, but only for a few seconds. The Tinnitus is there since 2015. I also have pain in my neck and my teeth, my mandibular is already postponed…it was a long way to find out, whats wrong in my mouth and my dentist extracted a tooth
it’s horrible!