Today my head/neck specialist told me that after reviewing my CT scans with a neurologist that they were "underwhelmed" by my scans and that he did not believe I have Eagle's syndrome. He also said I do not have the common symptoms of Eagles. I have told him that I have ear pain, throat pain, feeling like something is poking me in the throat, feeling like a fishbone is stuck in my throat, pain along my neck that often throbs, pain behind my head at the base of the skull, ect. and that although the pain is constant it also seems to shift throughout the day. He agreed my stylohyoid processes (that is what he called them) are elongated and that this could be causing my pain. He has ordered an MRI to rule out other issues and look for the source of the pain. I asked for a 3D CT scan and he did not feel that is necessary. He told me there was no need to make a follow-up appointment and that he would call me with the MRI results. I am afraid the MRI will show nothing of significance and I will be back and square one and back in "limbo". As much as I know I should be "happy" about the news that two specialists did not thinmy CT scans were of much concern, I am frustrated and in disbelief. I know the pain I am feeling and Eagles seems to be the only explanation. I do not think it is coincidental that my stylohyoids are bilaterally elongated.
Any words of wisdom or similar experiences are much appreciated!
Poor you, very frustrating... I'm sorry that they didn't feel your (classic!) symptoms were ES. What more common symptoms should you have?! I can only say that many members have had a long fight to get diagnosed, and have had quite a few different appointments before getting anywhere. Is there anyone else near you who you might be able to see?
Yes, your experience is unfortunately very common. I went to over 20 doctors before I officially got diagnosed with Eagles. Get a couple copies of the CT scan disc and if at all possible, go see other doctors until you find someone that either knows about Eagles or will listen to you. I think it's much better to go to a doctor who has experience with Eagles, but there have been a number of people on the forum who had successful surgeries with doctors who didn't have much experience with it.
If you don't have the option of seeing other doctors, then you can gather a bunch of information from here on the forum and any research you want to do on your own and bring it in and show him your symptoms are actually pretty common for Eagles - and that people with those symptoms had surgeries that corrected their problems.
Having Eagles can be an incredibly frustrating experience because doctors just don't know that much about it and don't always believe us when we discuss our experience with it. Even when other tests come out showing that nothing else is causing the symptoms, the doctors often still don't believe it's from Eagles. I really don't understand why there is such a reluctance on so many doctors part to believe it. Maybe since it's not taught in medical school, they don't want to accept it. I don't know. But in my case, I had to be very persistent and keep on trying doctor after doctor.
I am going to have the MRI of course and see if that produces any results. He said the stylohyoid process would be visible on the MRI (with and without contrast) so hopefully that may show something. If I do not get any answers from the MRI I want to schedule an appointment with Dr. Cognetti because from what I have read he is very familiar with treating Eagle's syndrome.
I am going to have the MRI of course and see if that produces any results. He said the stylohyoid process would be visible on the MRI (with and without contrast) so hopefully that may show something. If I do not get any answers from the MRI I want to schedule an appointment with Dr. Cognetti because from what I have read he is very familiar with treating Eagle's syndrome.
Beach Girl, I’ve been going through the same experience basically. My styloids are " a little above average" but also have a c1 fusion with occiput that is a big part of the same problem. I sent scans out to 4 eagles docs a few weeks ago, including Cognetti. Cognetti’s office called and said it would be " a few weeks" before he would even review my scans. Dr Carl Snyderman called me directly and laid out what he thought and in about 5 minutes He explained it better than any other doc has to date. I’m having surgery with him tomorrow - so I don’t have results to report but I am highly impressed with Snyderman and UPMC overall.
EddieH- where is Snyderman located? I am impressed he would view your scans & call you directly so quicky. Please let me know how if your surgery goes well. I will be anxious to see how it goes. I was not aware Dr. Cognetti would review scans without the patient present. I will look into that as well as Dr. Snyderman.
Dr.Forrest in Ohio dose the same. Mail him your ct scans they review them and call you. The Dr. I saw in North Carolina in less than five mins of viewing my contrast ct scan that i have classic es and where it is located and can surgically revome them interoral.
EddieH- where is Snyderman located? I am impressed he would view your scans & call you directly so quicky. Please let me know how if your surgery goes well. I will be anxious to see how it goes. I was not aware Dr. Cognetti would review scans without the patient present. I will look into that as well as Dr. Snyderman.
You get to decide if you want to spend money on an MRI or not. If you do, ask for all copies of tests to take with you to any other Dr. If your instincts tell you to do a 3D CT first, ask your regular dr. to order one. Much less expensive and much less radiation than a full MRI.
I feel your pain and struggles!!! I’m in the Exact same boat as you my dear!!! And I have the exact same symptoms as you do!!! It’s so rare my doctor said that he is very surprised someone spotted it it the ct scan and he says no one will operate on it. Like seriously!!! I have too live in pain my whole life!!! Ugh I’m beyond frustrated as u are! Private message me so we can talk
I too got the news from my ENT consultant last week that I haven’t got ES, was supposed to have CT with contrast which I think means 3D but I’m not convinced they injected the dye! Anyway now requested copy of scan and accompanying report to decide where to go from here. Talking to my chiropractor this am ( who first mentioned ES) and now discussing blocked eustacian tubes. Meanwhile we continue to suffer, good luck with your fight for a diagnosis. It seems that the different consultants grasp onto what the previous one has said and don’t listen to what I am saying at the time, this one does know about ES so maybe it’s me barking up the wrong tree!
Dizzyhel- a CT with contrast is where they inject dye- I'm sure you'd remember if that was done as it goes in with a needle into your veins. It shows up any compression or abnormalities of the blood vessels, and contrasts different tissues (or would do if they injected the dye!) The 3D Ct uses data from several x-ray images, then with computer technology it's converted into 3D images. Good idea to have a look at the scan and report, see what they say. I don't know whether to say sorry that they don't think it's ES or not... it's not a brilliant diagnosis, but at least if you know what you're dealing with you can think about treatment...
I was at my ES surgeon's ofc this morning and talked to his medical assistant. She said in their office they diagnose a person as having Eagle Syndrome when his/her styloids are 2.5 cm or longer and there are symptoms displaying. If your styloid processes are 2.5 cm or longer and/or you have calcified stylohyoid ligaments, then you have Eagle Syndrome. I see Dr. Samji (in San Jose, CA). If your doctors would be willing to talk to someone who has seen many ES cases and done several hundred ES surgeries at this point, then give them Dr. Samji's number. He's in the doctor list (click on tab above).
Thank you for the explanation, seemed strange that the consultant originally said 3d then on a letter to my Doctor that I would " hopefully" have a scan with contrast & when I had scan they inserted a cannula and said they were testing my veins to see if it could take the pressure but then didn’t appear to inject any dye!
Weird; I don't know about others' experiences, but they warned me I might feel strange with the dye and I did (might be because I was expecting to!), it can make you feel as if you've wet yourself! I don't want to put anyone off- it wears off quickly!
Not sure if its too late in the game here but the CT w/ contrast should tell show you if you have ES or not.. ALWAYS ASK FOR A CD COPY. Three different Dr.s looked at my scans and totally missed my ES. IT took me( a lowly IT administrator) demanding a CD copy. loading it on my PC and going image by image and finally discovering that I did indeed have ES. I immediate called the Drs. and gave them the image numbers and coordinates on the images as to where the syloids were calcified. IT seriously was not that hard.. I just googled ES images... compared them to myself and within 3 minutes I found it.. really that simple... ES is not something that Dr.s are classically trained they wont find it right off the bat.. at least take a chance and take a look for yourself. and if you need help trying to discern the images just let me know. I can help
Also another neat thing I found on these CDs ( that are no additional cost most of the time) is that if you play with the settings you can concatenate the images and create a 3D model and get an even better look at ES. even if you didn't specifically order a 3D scan...
May I suggest a physical paper copy of the radiology report? It will have the styloid measurements on it. A second opinion is usually an option for most patients. I have done this myself. I wish you much luck. I think you find your diagnosis on the radiology report.
Did you have any special software you need to be able to create the 3d part? Im trying to get another scan done, feels like I am starting the process all over again. Im trying to gather as much information I can. My last scan was almost 5 years ago.
mt83 said:
Not sure if its too late in the game here but the CT w/ contrast should tell show you if you have ES or not.. ALWAYS ASK FOR A CD COPY. Three different Dr.s looked at my scans and totally missed my ES. IT took me( a lowly IT administrator) demanding a CD copy. loading it on my PC and going image by image and finally discovering that I did indeed have ES. I immediate called the Drs. and gave them the image numbers and coordinates on the images as to where the syloids were calcified. IT seriously was not that hard.. I just googled ES images... compared them to myself and within 3 minutes I found it.. really that simple... ES is not something that Dr.s are classically trained they wont find it right off the bat.. at least take a chance and take a look for yourself. and if you need help trying to discern the images just let me know. I can help
Also another neat thing I found on these CDs ( that are no additional cost most of the time) is that if you play with the settings you can concatenate the images and create a 3D model and get an even better look at ES. even if you didn't specifically order a 3D scan...
