Hi there everyone. I've seen a lot of doctors and have undergone quite a bit of adversity with my health. My previous doctor recently moved and so I have a new General practitioner. I had chronic appendicitis and recently had my appendix removed, which has greatly improved my health, but I've still got serious jaw and neck pain. I was relaying my jaw and neck pain to my new doctor and he suggested eagles syndrome. I'd never heard of it. After spending a few days reading about it I'm finding myself greatly relating to the symptoms. I'm 33 years old and live in the Chicago area. I would love to have a recommendation for a doctor that is experienced in diagnosing Eagle Syndrome in the Chicago area. I would also like to prepare for the prospect of surgery and ask if anyone has recommendations for surgeons in the Chicago area as well. Also, what seems to be the best imaging for diagnosis. I've read 3-d catscan.....should I get that with contrast? What about x-rays or MRI? Thanks in advance for any replies/help!
MRI's = Useless
X-Ray= Generally unhelpful unless it is panoramic
CT Scan w/ contrast = extremely helpful in diagnosis
3d CT Scan= Extremely helpful
I would personally ask for a 3d CT scan, it helped me a lot VVVVVVVVVV
I am also in the Chicago area; I wasn’t able to find a surgeon in the area that was knowledgeable about Eagles. I had surgery done by Dr. Arick Forest in Columbus Ohio. My initial diagnosis was made by my dentist who specializes in TMJ…he saw the Eagles when he did a panoramic X-ray.
I highly recommend Dr. Forest if you are looking for a consultation.
Hope this helps and good luck!
That is at least a reasonable distance. Did he perform the surgery orally or make the incision outside by your neck. I've heard that, even though there are scarring concerns, success rate is higher if the surgery is done outside of the mouth. Thanks so much for the information. How long did it take between scheduling surgery and having it. Are scheduling dates reasonable?
Does the 3d catscan require contrast? I'm looking to try take one imaging test only. I want the most informative one. I would also like to minimize the number of times I have to take contrast.....so I just want to make the correct imaging suggestion to my doctor. Thanks!
It was done externally and the scar is barely visible. I would call his office and ask about the CT, he may want to do it there. I had mine prior to seeing him and it was done without contrast due to an allergy. My styloids were extremely elongated and pretty easy to see.
It took a few weeks to get an appt and then about 3 weeks from the appt until the surgery. He did only one side and I am feeling pretty good!!
Loopy, the 3d scan does not require contrast.
I would also like to get some feedback on my symptoms. I have pain in my throat, jaw, neck, and ear area. The discomfort is also in my clavicle and shoulder and sometimes even travels down into my shoulder blade. the right underside of my tongue also has a weird pinching feeling (all my discomfort is on the right side) The weirdest thing is I can feel a pain referral down into my abdomen as well. When I get a twinge in my neck I feel it down by my pubic bone/RLQ of my abdomen. Has anyone experienced this? I cannot express how helpful finding this collective has been....thank you thank thank you to those that are sharing their experiences here!
I don't get anything as far down as my abdomen or pubic bone, but in the last six months I have had a lot of trouble cracking the right side of my neck. When I rotate my head in an attempt to crack that side, I get a very sharp pain that travels from my neck down between my right shoulder blade and neck. This sharp pain can bring me to my knees so I have tried to avoid cracking my neck. Unfortunately old habits die hard as they say, I was so used to doing this popping or cracking of either side because it gave me a huge relief for about 15 to 20 seconds...seems like a small amount of time but was always worth it at the time.
Loopy, Wow, finally someone else. I get pain into my chest and down to the pubic bone area.
I get pain down through my shoulder blade and into my side. I even get it down my leg on the left side which is the worst side for me. I also get the pain in the jaw and nerve pain that travels around my head into my left eye.
I get palpitations in my chest on the left side also. When they first started I thought I was having a heart attack.
Mine goes down my left leg too. It's better since surgery, but still does sometimes.
Check into: vagus nerve disorder
The vagus nerve is right next to the styloid. My doctor told me that he has heard from patients that abdomen can be aggravated as well. Here is one article on Vagus Nerve Disorder.
http://www.medhelp.org/posts/Digestive-Disorders—Gastroenterology/VAGUS-NERVE-and-STOMACH-or-HEART-LURCHES-spasms/show/235578
Loopylooper said:
I would also like to get some feedback on my symptoms. I have pain in my throat, jaw, neck, and ear area. The discomfort is also in my clavicle and shoulder and sometimes even travels down into my shoulder blade. the right underside of my tongue also has a weird pinching feeling (all my discomfort is on the right side) The weirdest thing is I can feel a pain referral down into my abdomen as well. When I get a twinge in my neck I feel it down by my pubic bone/RLQ of my abdomen. Has anyone experienced this? I cannot express how helpful finding this collective has been....thank you thank thank you to those that are sharing their experiences here!
I am not in the Chicago area so as to your doctors I can be of no help. I can tell you, however, that a 3-D CT is the what you need for conformation. They will most likley give you contrast, but you can ask just to make sure.Find you a great ENT, that’s who who need to see. Your general practioner can order that 3-D CT for you so that you have it ready when you find your ENT. Also, you GP should be able to help you find a good ENT.
Loopylooper said:
I would also like to get some feedback on my symptoms. I have pain in my throat, jaw, neck, and ear area. The discomfort is also in my clavicle and shoulder and sometimes even travels down into my shoulder blade. the right underside of my tongue also has a weird pinching feeling (all my discomfort is on the right side) The weirdest thing is I can feel a pain referral down into my abdomen as well. When I get a twinge in my neck I feel it down by my pubic bone/RLQ of my abdomen. Has anyone experienced this? I cannot express how helpful finding this collective has been....thank you thank thank you to those that are sharing their experiences here!
Oh my gosh Loopylooper - You have an ES expert right there in Chicago! Neurologist Dr. Konstantine Slavin at the University of Chicago.
See his bio info at the following link:
Also, Journal articles he has written and published on ES are attached: The single case report was written in 2002 and the one with more patients was written more recently. Hope this helps.
317-jns.2002.97.1.0216_SlavinCasereportandreviewoflit.pdf (86.6 KB) 318-jns.2009.1.jns08485Slavinsurgtechniqueandoutcomes5cases.pdf (2.77 MB)Thats good news for those of us in the Illinois!
Has anyone here seen this doctor? Would love to know if he’s treated any of us…
JKL - He had a conversation with my local physician and was very informative and professionally cordial. I know he does an external approach and holds concerns for the risk of deep neck infection with internal approach - as his articles reveal. He was willing to schedule me for surgery based on his discussion with my doc and viewing screen shots of my 3D CT scan. I ended up going to Samji because he is closer for me so I haven't met him. He certainly has excellent qualifications.
Thank you for the information Alaska Eagle! I've scheduled a consult with him. I'll let you know how the consultation goes
:-)
I'll be very interested to hear Loopylooper!