After a 3 month wait I finally had my referral appt with Dr. Chan. She looked at scans only and disagreed with ES diagnosis made by my neuro and radiology report. She believes its autoimmune and cervical spine related. I personally think its all 3 possibly and my neuro recommended a second opinion. That said who would you recommend when both cervical spine, jaw, and ES are suspected? On the ES part someone who looks at head movt not just length on the cervical part the lack of curve may be influencing the angle as well as jaw placement.
Dr. Chan has turned away several of our members who did have ES. We don’t know what criteria she uses to determine what is ES in her mind. I suspect her definition is limited to a few basic symptoms, & if those are absent, she will not diagnose it.
If your neuro AND radiology reports say you have ES, you can bank on the fact you have it. There are currently no doctors in TX that I would recommend. You could see Dr. Milligan in Phoenix, AZ, or Dr. Nuss in Baton Rouge, LA. Farther from you is Dr. Samji in CA. Dr. Samji will do a 45 min. video consult for about $500. Your health insurance may help pay for that. If you don’t mind posting a 3D image of your CT scan (Making Your Own 3D Images from CT Scan- 3D Slicer Tutorial), we can also give you a non-medical opinion. If you’d rather not post on the forum, you can send them to me in a PM.
It has been postulated by @Calebp that the cervical spine can respond negatively to pressure by elongated styloids & thus the natural curve of the cervical spine can be lost as the body compensates for pressure placed on the nerves & vascular tissues. Though we don’t have any research info to this end, it does make some sense as our bodies will go to extremes to try to correct a problem that is causing pain & undo stress in a given area. TMJ seems to go hand in hand w/ ES as well as jaw misalignment which some of our members have suffered. Those go back to physical response to intense nerve irritation caused by ES. I believe if you had your styloids removed, it would help your jaw & neck to at least some degree. If nothing else, having them out would free you up to have PT for those areas without creating more problems due to those spikes being in your neck.
I hope some other people will also give an opinion.
A shame that she wouldn’t help you, I hope that you’re able to get somewhere with one of the other doctors Isaiah has suggested.
Thanks guys. I was warned here about her so I knew what to expect. I don’t think she even goes by symptoms. She looked at scan in her office and already had her mind made up before seeing me. She even said she goes by her interpretation of scans. Any state is fine, but is there one particular person who is connected with a spine person so they can collaborate or really knows movement because I think c1 is interfering as well as lower jaw.
I have c1 involvement as well but most if my compression is due to the angle of my styloid
Caleb I think thats the same as mine. I keep getting caught on something. It is partially calcified as well.
You can see the calcified ligament clearly in the last image, but the first two images do look like that it’s the C1 process causing compression…
I don’t know if it’s the angle of the images but in the first & second ones, the greater horns of your hyoid look longer than normal as well. If that’s the case, that may be what you’re feeling “getting stuck” on a cervical vertebra. Definitely something to ask about in a second opinion appointment.
I also wanted to suggest that since we don’t know of a doctor who specifically deals with ES & is also affiliated w/ a neck orthopedic doctor that you express your concerns & ask about that when you have your second opinion appointment. I would think that any ES surgeon would know of or be able to find out who a good cervical orthopedist is (s)he could collaborate with if necessary.
Thanks. Yep I showed that to her and she completely discounted it as nothing abnormal.
I’m sorry for her neglect of your concerns. She could have taken the time to explain why she felt the neck findings were insignificant in her mind. I hope things go better with your next appointment.