Ok…I’ve gotten the summary back from my MRI w/o contrast that was ordered by my neuro doc which he specifically ordered for Eagle Syndrome! There was absolutely no mention of anything related to ES. Of course this MRI was read by the same guy that did the CT w/contrast earlier in the year and when made to specifically comment on SPs - said they were normal 2.5 and 2.4. I do have severe issues in 2 places of my cervical spine. My follow up appt isn’t until November 27th!!! Probably going to need to do something surgical to remedy. However, I am concerned with an ES flare up if I have surgery on my cervical spine. Anybody with comments on this - cervical issues seem to be common with a lot of ES sufferers?
ALSO…I pulled up my 3D dental pan am again last nite searching for answers because I refuse to accept being blown off with this ES thing. I finally turned my head upside down to get a better view of the hyoid and sure enough, there were the ligaments. My question is this for everyone that is somewhat knowledgeable with these dental type pics…(sorry I am not even close to being tech savvy enough to post them) can these ligaments be seen on the pan am if they are not calcified? Looks to me like all that can be seen are bones! They seem to be the same shade/color as my teeth roots and they go all the way from hyoid to SP!
X-rays don’t show soft tissue thus I speculate if you can see your s-h ligaments then they are most likely calcified or partially calcified. Sounds like maybe the radiologist is classifying ES as only elongated SPs & leaving calcified s-h ligaments out of the equation. I’m including the definition found on Wikipedia, but it’s also found in many reputable research papers on ES, some of which you can see in the Newbies’ Guide on this forum.
Wikipedia’s definition:
“First described by American otorhinolaryngologist Watt Weems Eagle in 1937, the condition is caused by an elongated or misshapen styloid process, the slender, pointed piece of bone just below the ear, and/or calcification of the stylohyoid ligament, which interferes with the functioning of neighboring regions in the body, giving rise to pain.”
I suggest that you make an appointment w/ the radiologist if possible & go over your CT scan with him but take copies of articles that give a thorough definition of ES with you for back up in case he challenges your opinion. NEVER let a doctor make you feel stupid, uninformed or inferior just because you don’t have an M.D. after your name.
Isaiah_40_31
You took the words right out of my mouth! I looked at my pan-am again to make sure I am seeing what I am seeing and decided I was going to give the radiologist a call to see if we can set up a meeting. Both sides show ligament calcification all the way from bone to bone. I will take my pan-am disk with me so he can see it in real time and then maybe he could pull up the MRI to see if he can match it!!! I am just beyond frustrated with this guy. He is absolutely refusing to acknowledge the eagle thing for some reason. Of course Dr. Chan’s office in Dallas couldn’t get the pan-am to upload so she couldn’t see the obvious either. I just can’t imagine all of the “issues” that are missed because those that would be in charge can’t read the very scans that are suppose to show them the way. Aren’t they making the big bucks because they have the training to do these very things??? My PCP just looks at me and can’t imagine how I am even remotely pleasant with all that I have going on from my shoulders up. She was pretty much in awe as well 3 years ago when my TSH bloodwork came back with numbers (135 - 155 2 years before but missed by that doc because it was on the second page) that should have had me in a coma or at the very least in bed unable to function! Guess I’m just one tough cookie. Believe it or not, I was a pretty healthy individual in my younger years!
And, I want to say Happy Friday to all my ES peeps and thank you all so much for your support - truly my life line!
Good thinking on your part! So glad you’re advocating for yourself! Keep up the great work!
I didn’t realize that Dr. Chan turned you away because she couldn’t see your scan & wasn’t able to determine if you have ES or not. That seems a little unprofessional after the distance you went to see her. I’d think her office could have contacted the radiology lab that did your scan & have them send it electronically while you were there even if it was a slight time inconvenience for her. I guess there isn’t much flexibility in some doctors’ time schedules. So sad!
I hope you’re able to get an appt w/ the radiologist & that he is reasonable in discussing the basis of his opinion that you don’t have ES. I also hope he is willing to listen to you & your reasoning. A doctor who takes time to listen to his/her patients & consider their point of view is a better doctor than one who won’t.
Isaiah_40_31
Apologies that I wasn’t very clear on the visit with Dr. Chan. They were able to upload my CTs and MRIs, just not the dental pan-am. As we all know the SPs can’t really be seen in “real time/view” unless they 3D them. My pan-am is a 3D and shows both the SPs and the Ligaments as they really are. In my case the right SP is really thick and a different angle than the left. And, I can clearly see the calcified ligaments. The 3D pan-am is the disk they (Dr. Chan) could not upload, though I don’t know why since the folks at the University hospital in OKC say they were able to upload it.
AHA! Thank you for the clarification. Still surprised she would turn you down with the info on the CT & MRI. Hmmm…
So frustrating for you- it sounds like you’re doing all you can to push your case, hoping that some-one will take this seriously for you! At least you have an understanding & supportive PCP…
I talked to the radiology department to talk with the doc that read my MRI. He wasn’t available and the lady answering the phone says they don’t actually have an office so a meeting was out. I then asked her to take a message for him to call me so I could discuss it over the phone. Then she told me that just isn’t done and that I needed to talk with my doctor. I then told her I was the one paying for the scan and I think a conversation with him was not unreasonable…we will see what happens next week!
It looks like I am going to have to go buy a laptop to take with me to these appts so I can pull up the pan am myself to show them!!! I am so beyond frustrated with this…no one person should have to deal with all of this. Top it all off with the MRI showing severe disk issues on a couple of places along with spurs and narrowing, etc in my cervical spine! I don’t see the doc about that until the 27th of November, so I’m guessing surgery on that before the end of the year is probably not going to happen. Translation - insurance and deductible goes up come the first…thus more frustration and stress.
@Isaiah_40_31 Dr. Chan turned me down because the only thing they (all docs involved) can see are SPs that aren’t overly elongated…“just slightly and that certainly wouldn’t be causing all my issues” For whatever reason, they can’t see the ligament calcification in the CTs & MRIs. I only recently found them on my dental pan-am when I turned my head upside down to get a better view of my hyoid bone.
Beyond frustrating…interesting with the disc issues, bone spurs etc., I think there’ve been quite a few people with bone spurs, obviously something going on there with the calcification… I had ES symptoms for a while, but it was only when I developed a disc problem in my neck that I then got vascular symptoms, I wondered if it shifted things a tiny bit , enough to cause compression, or whether it was just coincidence…
Anyway, seems crazy that when you pay for a scan yourself you can’t discuss it with the radiologist! And having to get a laptop to take to appts. yourself! Have you read shanef’s story? The calcified ligaments seem to have been missed somehow on his scans too.
I hope that you keep strong & can keep fighting to get the help you need!
@Jules
I also think that disc problem bringing on the vascular has a truth ring to it! I have not always had the vascular issues…only over the last 2 or3 years. I have read Shane’s story and I saw a lot of similarities. Everyone’s story has a bit of mine in it I think! LOL
I did purchase a laptop yesterday, brought it home and tried to upload the dental pan-am. It would not open the disk. I think the other disk (the one I gave to Dr. Krempl’s office) had the program on it as well. I think the remaining disk I have only has the
pics. I will ask my PCP to request a disk of my pan-am from the dentist (I kinda burned a bridge there when I walked out over him refusing to pull the last lower molar)! If I have to beg him personally for a new one, I can do that too…whatever it takes. Also going to try tonite to download the free Galileo Viewer and see if that will do it. It just feels like this disk doesn’t have the full viewer ability on it. Whatever the case, I WILL get it done because I’m mad as hell and i’m not going to take it anymore!!! 
Those 3D pan-ams should be the standard scan required for ES…shows everything that needs to be seen as far as SPs and the ligaments are concerned. I am determined to educate along the my path - especially this radiologist that keeps reading my stuff and refusing to acknowledge the ES! It will cost me a co-pay for several of these visits, but I will make an appt with all of the ones who have blown me off and take my laptop along to educate them. Something has got to be done for all of us out there dealing with this incompetence/ingnorance!!!
Pardon my Monday morning rant 
Rant accepted, I think you’ve earnt it! Your attitude is amazing- not giving up, doing all you can to find out the problem, and you’re really supportive of others despite what you’re dealing with! Big hug to you 
Well that’s no good! It would be nice if he had the courtesy to call you back. What a frustrating situation for you.
I’m without my computer for a few days & posting by phone is a bit challenging. I second & third everything Jules said though! Including the hug.
Hang in there & know you’re fully supported on this forum!
@Jules
@Isaiah_40_31 So many thanks to you both for putting up with my highs and lows! That is exactly how my life has been for decades. Had a bad run of it over the weekend…a case of the shakes in my right hand especially comes on every now and then to join in on whatever symptoms of the day are happening. Thus super frustrated and the mad as hell part. Seems as though someone mentioned the shakes kind of thing somewhere along my reading?
Good news is PCP called the dentist…they are mailing a disk - YEA! Didn’t get a chance to try downloading last night - trying to prepare for a minor surgery this morning at 5:45am. Like you Isaiah_40_31 I am having a bit of a challenge currently typing without the use of my left hand( well, mostly my index finger)! Thanks so much for my hugs - much needed and appreciated! 
Hope your surgery goes well, poor you…hope the ES symptoms diminish a while as you recover! 
Also wishing you well as you recover from surgery. Maybe having something else to recover from will “scare away” the ES symptoms for a bit. We can hope for that!
Speedy recovery for you & wishing for a giant step toward ES resolution ASAP!!
