Let the ENT order the testing?

Hi All,

I'm still relatively new to this group. In one of my posts, I shared that I have a connective tissue disorder called Ehler's Danlos Syndrome (all of my joints dislocate). I've had several surgeries on my jaws to rebuild them because they dislocated so often and tore. The surgeons have removed muscles behind my ears (fascia flaps), dermal grafts, and artificial joints. I ended up not being able to open my mouth so, my left jaw joint nearly totally ossified closed. Also, both joints (but, more on my right jaw) were covered with copious amounts of scar tissue. The surgeon said that she could not get a lot of the scar tissue out because my nerves and blood vessels were wrapped in it. She replaced both jaws with mostly titanium and plastic. I am having so many problems getting doctors to order the right tests (with proper protocols) and the technicians to know how to do the testing correctly (following the protocols). I have spent so many years trying to get diagnosed. For many years, I've had serious symptoms: apnea (while awake and asleep), heart arrhythmia, passing out or nearly passing out, headaches, difficulty swallowing/choking, unstable hyoid and tracheal area with pain, tinnitus, neck pain, inability to be upright consistently for long periods of time, clonus down both arms and legs, instability at C1 & C2 areas, vomiting, nausea, abdominal distension, neurogenic bladder, etc. If I stretched my jaws or turned and moved my neck in various directions, it would set off a cascade of bizarre symptoms (vasovagal). Apparently, the MRI the doctors ordered did not provide much information. I can only open my mouth about 12 milimeters...which is not very much at all. In August, my neurosurgeon pressed on my neck at my C1 area and something popped and shifted; now I can barely turn my neck at all. Yikes....I may have more than one thing going on.

My question is: because I have a complex case, do you think I could just go to one of the ENT's who specializes in Eagles Syndrome and get him or her to order the correct testing for me? I don't want to arrive for an appointment with an ENT for the first time with testing that was done wrong or the wrong tests. My primary care doctor wanted to just to a few regular x-rays to rule out Eagle's Syndrome...and I'm not sure that a regular x-ray would pick it up...or would it? I've already been to so many ENT's who upon examination did not notice anything wrong, or saw something wrong but, did not know what to do, or said, Eagle's Syndrome is not even a "real medical condition." But, I guess you Eagle Syndrome veterans know this drill all too well.

Thanks for any support and help:)

Peace & Blessings

Don’t give up? I practically had to beg an ENT to perform my surgery and although I think I am still healing because I still get pain in my throat and neck I do feel better. My surgeries were internal in march and April of this year. You need a CT with contrast dye to properly diagnose. There are 2 types of Eagle’s. The first is called “Classic” and it involves a stylohyoid ligament that has ossified. The kind I had and I will guess you might as well is a naturally occurring elongated Styloid it has caused progressive problems for me since about 13 when I was fully grown. To measure the length of the styloid you need the Ct with contrast. Please take care and post here often I was totally convinced that I was simply a hypochondriac until about my 50 th visit to an ENT told me I might have Eagle’s. 2 doctors assured me that I did indeed have an elongated styloid - slightly over 3.5 cm but they did not feel that was my problem…? There is a list of doctors familiar with the condition on this site made by Emma. Where do you live?

HI, a panoramic head xray will show them. That's how mine were discovered.

Panoramic at the dentist showed mine, too. Maybe find a TMJ specialist who knows what eagles is and get the X-ray…it’s cheaper!
Of course, knowing you have elongated styloids doesn’t guarantee thats the root cause of your troubles, but it’s a start. Hang in there!

Mine was diagnose by a TMJ specialist through a panoramic x-ray, also. then only needed a ct-scan for the ENT before he did the surgery.

3D CT Scan, with contrast is better.

I had a cervical spine fusion so I have question. You're saying that you have C1-C2 instability, have any neurosurgeon confirmed it? Did he recomend a surgery?

After my C5-C6 fusion I was on my physical therapy and everybody told me that I might have C1-C2 instability, and I was doing a lot of excersises to get rid of it but finaly got digital motion xray to find out that there is none instabilty, at least nothing serious but I still have clickin and crunching sound ( just on my right side, nad this is the side where my styloid is elongated ). I also have tinnitus, but more that that I have hyperacusis (hypersensitivity for sounds). I have neck pain at the C1-C2 level but only at one side.