spinsic - Welcome to this forum. We do hope you get lots of helpful information here as well as encouragement. The place you need to start is by getting a CT scan of your neck & lower jaw area (some doctors call this a styloid protocol CT scan) aimed at diagnosing Eagle Syndrome. When I went in for my CT scan, I made sure the radiologist knew I was there trying to find out if I had ES. He was familiar with it which surprised me.
If you have vascular symptoms (heart or blood pressure issues, migraines, vertigo, pulsatile tinnitus, etc.) you can request to have your CT done w/ contrast although some of the more practiced ES surgeons prefer CTs w/o contrast.
Please let us know how we can best support you on this journey.
I’m so happy for this forum because my symptoms scare me sometimes
I occasionally have moderate to severe lightheadedness, vertigo, pressure in the temples and face, palpitations, nausea, muscle knots surrounding the calcification down the neck and into the shoulder, tingling/burning/numbing down one side of the body, constant choking sensation in throat, and with all of that occasionally feeling anxiety from said sympotms
I had very similar symptoms to yours during hard aerobic workouts. Anything that caused me to use my neck & shoulder muscles (slamming ropes, for example) would cause my blood pressure to drop, make me light-headed/have vertigo, feel winded beyond what I should have… I also wouldn’t recover quickly like I was used to doing.
If you’ve done some reading in this forum, you’ve probably seen that elongated styloids can compress vascular tissues (most often carotid arteries &/or jugular vein) which can cause lightheadedness/vertigo, heart palpitations, migraines, etc. They can also irritate cranial nerves that run through that area of the neck. The vagus nerve (heart rate/gastrointestinal tract/anxiety), accessory nerve (shoulder), trigeminal nerve (face), hypoglossal & glossopharyngeal nerves (tongue & throat) are the ones which most often provide ES symptoms. I have generalized what is affected by each nerve but you can Google them for more specific details.
There is at least one doctor in your state on the US ES Doctor’s List. If you haven’t looked at that list yet, you can find it in the Newbie’s Guide or use the magnifying glass above to search for it. Surgery gave me my life back & my ability to exercise hard. It did take about 9 months post op for most of my symptoms to go away though. I’m currently 4 years out from my first surgery & 3.5 years from my second one. I had bilateral ES.
Thank you for this information, I can’t find a Doctor in my network to help me. The one Dr. I saw gave me Tylenol 3 for pain. I don’t want to become addicted.
This is rare indeed. I experience the Type 1 symptoms, just started brothering me the last 4 months. Bi-lateral elongated sharp pain more on the right side than left… Hard to find Specialist in my network, I’m at a lost of what to do next.
The latest doctors list is the 2017 one, in the Doctors Info section, if you’ve not seen it. Unfortunately members often have to travel a way for surgery. If that’s not possible it’s worth trying a skull base surgeon or an otolaryngologist in your network as they operate in the styloid area. You could ask if anyone knows of one in your area/ network by starting a discussion? Also I think some members have appealed & been able to see a doctor out of network too if there’s not one close to you; you could search padt discussions for info. Good luck!
Thank you. The one that I found out of network would not accept my insurance. I changed my Insurance Provider and now have an appointment
in January, with that particular E.S. Thank you for your response.
That’s great news! Your appointment date will be here before you know it! Please keep us posted as to how you fare w/ that doctor.
I will, this group of Doctor are Otolaryngologists. Notice discomfort the pain is more frequent. I’m glad to have someone to talk too who understands. Thank you again.
Definitely understand your pain & have been there & done that!!
Hoping for the best for you!
I am new to this group. I have been suffering from ES for about a year now. Could you tell me the name and location of the doctor that performed your surgeries? I would greatly appreciate it as my symptoms are getting worse.
My surgeon was Dr. Hussein Samji in San Jose, CA. He is very likely the most experienced ES surgeon in the world at this point though there are many others who are very accomplished at doing ES surgery. He has done 200-300 ES surgeries.
I’m attaching the Other Countries’ ES Doctors’ List for you to view. There is a doctor listed in Central America on that list. I’m sorry I don’t know anything about him, but as he is on the list, it means he’s done surgery for someone on this forum in the past.
Please let me know if you have other questions or if I can help you in any other way.
OtherCountryEaglesSyndromeDoctors 2017.docx (22.5 KB)
Thank you so very much for this information! I am glad it got bumped. Boy do I relate to most of that! I have a very sensitive body to boot.
What dr did you see? I just want to go to someone who it’s familiar with all of es abd hyoid bone syndrome. I’m exhausted and I’m tired I just want to go see someone who’s actually going to do something and help. I don’t even care where it is I’m in Southern California I will make it there wherever it is.
Okay I see you had the doctor in San Jose. I’m calling him tomorrow.
Dr. Samji, whom I saw, is the most experienced ES doctor on our Doctors’ List. I don’t know if he’s ever diagnosed hyoid bone syndrome. If you get a second nod away from ES, Dr. Karuna Dewan at Stanford has done hyoid bone surgery for one of our members who didn’t end up having ES. She would be another resource for you.
Thank you you’re amazing. Always helping me out. But what exactly is the difference between the two.
ES is elongation of the styloid process(es) which is actually calcification of the stylohyoid ligament. The s-h ligament runs from the tip of the styloid processes to the lesser horns of the hyoid bone. The hyoid bone also has two greater horns. Hyoid bone syndrome arrises from the greater horns becoming elongated or thickening such that the hyoid bone loses some of it’s movement & begins to press on some of the same nerves that elongated styloids &/or calcified s-h ligaments irritate.
The hyoid bone can also become “tethered” by calcified stylohyoid ligaments. Under normal conditions it moves freely up & down & a little side to side when we swallow, talk, laugh, cough, sneeze, breathe, etc. When it loses the ability to move as it needs to, pain results.
Here are some internet pictures to help you visualize these areas:
Click on the box w/ the question mark & the link for the hyoid bone picture should open. Please let me know if it doesn’t.