New to Eagles- What specifically is the test that clarifies Syloidectomy needed?

Hi,

I was told from a cervical CT scan that I have Eagles. I will be seeing an ENT who I emailed, who said he has done Syloidectomies and would see me. What tests specifically were done for you, to clarify that this was needed? I am very symptomatic, but want to know what your Dr ordered, that was part of your process to having syloidectomy, and was your entire styloid taken out, or just a portion?

Thank you!

hi eaglerosie



my doctors have compared my CT scan to the symptoms that I am having. The fact that the pain has not progressed into anything orally visible (cancer) or neurological (sclerosis) is supporting their decision to do surgery. but… they have also told me that There is no 100% diagnosis regarding Eagle/styloid syndrome… In my case they can not feel the styloids from palpation of my tonsils from inside. But I know that this is one way to support the diagnosis too…

I am told that they are removing a portion of both styloid bones/ligaments intra oral style. they are doing it this way since they are removing my tonsils as I have a calcification inside my left tonsil. they dont suspect anything wrong but think that it should be removed. And the surgeon mentioned too that I would not have the scarring as well… right now I really dont care about how I look. I just want to get better.

thoughts and best of luck to you eaglerosie

Hi Rose,

I like your name, I was reading your latest post yesterday. I am with you, I want to get better, and I want them out. I have tried to feel back there, but I really can't feel anything and I don't know if I am feeling in the right spot. Will they do both sides for you at once since they will be in there anyway? I will look back at your post, but I understand your surgery is coming up soon, right? I also can't recall if your Dr is an Oral Surgeon or an ENT. Thank you for your input. I want the best for you!! :) This is no fun! I hope having everything done at once will mean quicker turn around and less pain overall.

Thank you for your input!~

Hi Rosie :slight_smile:
would you believe if I told you that my lastname is really “Eaglerose”? LOL… life is that cruel sometimes…

I do not know if the styloids are always to be felt. No surgeons or ENTs have been able to feel mine. I feel it inside though… sometimes it feels like being spiked with a sharp… well… bone :wink:

Here in Denmark where I live, you have to go to a local ENT clinic and then if lucky enough they can and will refer you to hospital unit ENT, and they have ENT surgeons working there who will decide what to do.

The ENT surgeon will be removing as much bone as possible from both sides at the same time. They will be taking tonsils out anyways. It will happen this 22 of october. I am frightned… but as you know… when this gets really bad… there is no living with this. It is a crazy condition!!

How bad are you from this? any signs of surgery possiblities?
/Best Rose

I guess when you got this diagnosis, with your name you thought "Well that figures!" Two days before I got the diagnosis I made a playlist of songs from The Eagles Greatest Hits! So, I said the same thing, but you have a much more uncanny connection! Thank you for your input. So next Tuesday is the day for you. I am so glad they are doing both at once for you and getting your tonsils out. May I ask what your tonsils are doing that is bad? I go to the ENT surgeon tomorrow. I have written down the CT Angiogram and the CT Venogram (not sure if I have them written correctly) and printed out an article about Eagles and what was done for that patient (styloidectomy). My pain has been bad for many years, and this was always overlooked after seeing many neurosurgeons/neurologists. I have another cervical spine issue that is causing the brunt of the pain, but I have been clearly commenting on this pain in the front sides of my neck and swallowing issues for a long while. This can be attributed to the issues in my cervical spine and I think they just paid no attention. Finally a neurosurgeon pointed them out. I have a 3D CT scan that shows them.. spikes. I hope I come across as wanting a solution, rather than a nutty patient! Thinking good thoughts for a good visit~! Also for you, for next week! Best, Rosie

LOL that is so weird with your playlist too! what is up with that!?



they want tonsils out because left one has a little calcification in there. they just want to be 100% sure what that is. No indication of cancer though. I think it is just the way we do things here in denmark. My surgeon har also done this styloidectomy surgery several times intra oral way. So he feels confident by doing it that way.



I am sorry that you have so many different illnesses going on. you are so young… seems not fair. I really hope that you will get help regarding ES. Its a life wrecker…



Very good idea that you brought that ES article with you. How did it go??

Thoughts from Eagle Rose