Hello everyone. I am new to this group. I am not diagnosed, I’m still in the midst of trying to get checked for this. I have several chronic health issues,but my symptoms that somewhat correlate with Eagle syndrome and possible compression are bad headaches that affect the top of my head and back of head( occipital region). Movement, laughing, etc can trigger them. I also lately get pressure in my head and above my eyes and in the facial region. I saw a neurologist who mentioned migraines or occipital neuralgia possibly, but they aren’t sure. I may also have possible EDS. Anyhow, I live in the Chicago area and am having a hard time finding any doctors who are actually knowledgeable about this disease. Does anyone know anyone good here in the Chicagoland area who has expertise in Eagle syndrome with possible artery or nerve compression?
Hi,
We have a list of doctors familiar with ES in the Doctors Info Section , here’s a link:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
There are 3 that we’ve been told about in Illinois, you can use the search function on the site too look up any discussions about them… Would your neuro be able to get a CT scan for you, if you could be getting one it might save you some time- preferably with contrast, from the base of the skull down to the hyoid bone.
I hope you can get some help!
Thank you. I saw the three doctors here in the Chicagoland area but unfortunately Dr. Cundiff is no longer seeing eagle syndrome patients. Dr. Miloro at University of Illinois hospital is no longer practicing. I am looking at Dr Stephan but not sure how much knowledge she has with compression issues associated with Eagle syndrome. I am also trying to see if any neurosurgeons at the bigger hospitals here can help. I mean you would think a neurosurgeon with expertise is microvascular compression would know how to handle any kind of compression. At least one would hope.
Thank you for that info, & I’m sorry that our list isn’t up to date, I’ll alter it…
You could try a Neurovascular surgeon, or a Head and Neck Cancer surgeon/ Head & Neck vascular surgeon. If you think you have vascular ES, then it might be worth travelling to see a doctor with experience; is that possible for you?
Here’s a link to a discussion about Dr Stephan in case it’s helpful:
Surgery Tomorrow - Prayers Appreciated! - Support / Prayer and Healing Energy Requests - Living with Eagle
Thank you. Unfortunately our insurance only covers doctors in Illinois. They won’t cover out of Illinois and we cannot afford to pay out of pocket for surgery. I’m hoping a neurosurgeon would be able to help sincere they are usually knowledgeable about nerve issues and compression. This is so frustrating to say the least that there are not many doctors who deal with this and most know nothing about it. I will definitely look at Dr. Stepan. Thank you.
We’ve had quite a few members who have been in the same position, & appealed their insurance, I don’t know if these are at all helpful:
Dr Osborne- Blue Cross Blue Shield Out of Network Waiver-2025 - Welcome / New User Help - Living with Eagle
I’m asking for my eagle syndrome familys help - General - Living with Eagle
Update …final appeal - General - Living with Eagle
Thank you so much. I think I will start with her. At least she knows about this disease.
Hi @Ihurt!
I was blessed to have Dr. Stepan from Northwestern. We did an initial consultation in December and had to go back again once she had my previous CT scan results. She listened to my concerns (globus sensation, tinnitus, and risk of carotid artery damage from calcified styloid ligament). When we talked about quality of life, I stated I couldn’t live the rest of my life knowing there was a risk of the calcified ligament nicking my carotid. At that point, she agreed that the surgery was a viable option for me. Now about 10 weeks post op, I still have tinnitus and global sensation (which is most likely a result of “silent GERD” causing swelling in my throat), but just mitigating the risk of damage to my carotid gives me peace of mind.
Just so you know, a recent member of this forum contacted Dr. Stepan’s office and was told they don’t deal with sore throats. So I am unsure how they presented their symptoms to get that response. Dr. Stepan primarily deals with head and neck cancer patients.
Wishing you all the best!
Thank you for the response. My symptoms are headache and pressure in the head and face at times. I also get random pain in jaw area ( left side). I hope I can get an appointment. Did you need a referral to get an appointment?
I did not need a referral. I am Medicare and it wasn’t required.
You really need to advocate for yourself. Eagle’s Syndrome symptoms impact people in very different and unique ways. I don’t have pain, but random stabbing pains in the back of my throat or under my tongue were most likely from the elongated styloid. Also, I sing in choir at church and by the end of rehearsal night, I would almost have no voice. I believe that I noticed these odd symptoms early on and if I had waited, they would have progressed.
What are the results of your tests showing?
I have not had any testing. My friend mentioned this to me because of my symptoms. She has similar symptoms except she has extreme gut issues as well. She had a CTV that showed her right jugular was severely compressed and her left was not great either. She is seeing someone out of state in Arizona. Sadly my insurance only covers in Illinois so I am trying to find someone here who can order me the correct testing to check for compression. My friend said the neurosurgeon she is seeing in Arizona said that a CTV of the entire head and neck and all the way down to the collarbone is what is needed to check for any and all compressions before undergoing styloid removal in order to make sure what is going on. Sometimes I guess there can be compressions of different nerves/ arteries further up in the skull. I saw a chiropractor who is doing NUCCA treatment on my neck to try and help with the headaches and other symptoms I’m getting. He did lots of X-rays but they don’t really show a good picture of the styloids. I need more comprehensive testing to either diagnose or rule out elongated styloids and compressions.
Just in case you don’t know this, the only type of scans that show nerve compressions are a FIESTA or CISS MRI. In the traditional tests for ES & vascular compression, nerves are not visible.
Oh wow, thank you for mentioning this, I appreciate it. I’m sure finding a doctor aware of this might not be easy.
Any luck? I’m also from Chicago n have BCBSmmai n don’t care about me enough to pay for surgery out of state is horrible
Hey there. I wanted to reach out to you. I know you said you had surgery with Dr. Stepan. I just recently saw her PA. They wouldn’t give me an appointment with Dr. Stepan, I had to see her PA first. Well she ordered a CT of the face saying that will show the styloids and be able to diagnose eagle syndrome. I’m a little confused and even mentioned that wouldn’t a CTV of the whole head and neck be better, but she said they only need the CT with and without contrast of the face in order to show th styloid processes. What are your thoughts?
Dr. Stepan is very conservative in her approach. I had only a CT and it clearly show an elongated styloid and the calcified styloid ligament. After reading what a CTV involves, and knowing Dr. Stepan’s background as a head and neck cancer surgeon, I completely trust their call in the type of imaging needed.
Many years ago, I had an enlarged lymph on the right side of my neck, which was surgically removed by another doctor. When another enlarged lymph node appeared in that general area, the surgeon wanted to do another operation. I had a 2nd opinion by the chief of head and neck surgery at Northwestern at that time. He took a wait and see approach as he wasn’t seeing evidence of cancer from the previous biopsy. He had me come back every six months for an exam and scan. The lymph node never changed. All this to say that I trust the Northwestern team and their approach.
Thank you for the response. I just want to make sure the CT of the face will be enough to show if there is any issues or compressions. I like Northwestern very, all of my other specialists are there too. According to the PA, after I get the CT of the face, then the doctor will look at it and we will go from there depending on what they see I guess. If there is an issue with elongated styloids, then I will see Dr.. Stepan and discuss options. Is that how it went for you when you saw her?
Hi. Yes, that’s how it transpired. Praying for you to get the results you need!