I was diagnosed with Eagle Syndrome a couple years ago by an ENT. It wasn't bothering me that much except for sore throats once in a while and headaches. I had my tonsils out when I was young, so I knew that was not the cause of my throat pain. I could feel something in the back of my throat, so I felt back there one day and could feel a bone sticking out into the back of my throat. I was totally freaked out and went to the ENT and he indicated he had never seen it before, but knew it was Eagle Syndrome. He told me to keep an eye on it and if I kept having symptoms or it got worse, to see a specialist.
Well....in the past few months, it has gotten substantially worse. It feels like it has gotten bigger, my throat is in pain and I have pain in my neck, along with some vertigo and headaches.
Does anyone out there have any recommendations for specialists in the DC Metro Area? I looked on the doctor's list for this page and only see five doctors listed. If anyone can provide a recommendation, please let me know. I am in my early 30's, have two children under two, work full-time and just want to get back to normal....whatever that is. I see that surgery is most likely my only option to solve the problem, but that looks risky too.
Thanks for any support or info you all can provide. So happy to find this page!
I have those symptoms as well. The styloid is sticking into the left side of my throat (I have also had a tonsillectomy). I experience severe headaches, facial, neck, ear and throat pain/pressure. The dizziness is the worst. I have come close to passing out on multiple occasions. It is very scary especially when you have to be at work full time.
It sounds like you have the vascular type of ES. Where the styloid is compressing the carotid and other arteries.
I don’t know of any doctors in the DC area but hopefully someone else in this site does. Was your doctor able to recommend any specialists in your area?
My advice to you would be to find an experienced ES surgeon and get the surgery scheduled. My symptoms started out as just annoying but tolerable and got progressively worse over time. Within the last 2 months the flare up of vascular symptoms (dizziness, racing heartbeat/palpitations, etc.) have come on strong and fast. I can’t really sleep at all. No one should have to live like this. It is not normal.
I am having surgery tomorrow. I hope this has been helpful. If you have any questions I am more than happy to help.
Thanks so much Krista for responding. Hopefully I don't have the vascular one....that's the more dangerous one, right? I will be praying for a great surgery for you tomorrow and a fast recovery. Please keep me updated on your progress. I called the ENT this afternoon and he said I need to have a CT scan ASAP to make sure the styloid is not compressing my arteries. So scary!
Welcome to the site! Knowing others are in the same situation helps a lot, hope that you find that.
A CT scan will hopefully show if you have vascular ES; the vertigo you're getting might be due to some irritation of nerves, not necessarily blood vessels. (that's my non-professional opinion!) A lot of us have ear problems from the ES, which I think, for me anyway, can then cause dizziness. I hope that you can find a specialist- does your ENT recommend any one? I think a lot of us get to the point where we're prepared to travel for the help we need!
Good luck to you tomorrow Krista, and ley us know how you get on,
Ashley,
You are so welcome! Yes vascular can be more dangerous because of the carotid and other arteries. Definitely get that CT Scan just so you can have a better idea what is going on inside. Thank you so much for the well wishes I will keep everyone updated as I can.
Jules,
Thank you so much! I will!
USHIICEO said:
Thanks so much Krista for responding. Hopefully I don’t have the vascular one…that’s the more dangerous one, right? I will be praying for a great surgery for you tomorrow and a fast recovery. Please keep me updated on your progress. I called the ENT this afternoon and he said I need to have a CT scan ASAP to make sure the styloid is not compressing my arteries. So scary!
Don't worry about it being the "vascular eagles syndrome". I had all the same symptoms dizziness, headache, throat pain
ear pain, swallowing issues. I recently had external surgery in Cleveland OH. My styloid process was NO WHERE near the carotids. Many of the symptoms were explained by my surgeon as the styloid impinging on nerves. She also told me :eagles syndrome in itself is extremely rare and stylo-carotid syndrome is even more rare than that. Good luck with finding a surgeon in your area. I wish I could help but only know a few in Ohio....they are hard to come by. Take Care and Prayers are with you.
DC is not that far from Phila. If you can't find a surgeon near you who is willing to do the surgery, there is a doctor a Penn Medicine in Philadelphia who is willing to look at scans and operate. The surgeon there who did my son's surgery does not have the time for ES as his speciality is in demand, but he did set up another surgeon in the practice to take care of this need. That doctor does not want his name on the website (and I did not meet him or speak to him directly), but if you need a Phila surgeon, you can send your CT scans to his scheduler, Lindsay Flood by calling 215-■■■■■■■■ and asking for her. Tell her you have ES and you would like your scans reviewed by the appropriate surgeon for surgery.
We were also told that they wouldn't know if the carotid artery was close until they got in there. My son's nerves on one side were wrapped tightly around the bone. There was no way to see that prior to surgery.
USHIICEO, I was just diagnosed a few weeks ago, also in the DC area. I have an appointment with both an oral surgeon (Merlo) and an ENT (Chia) next week. I can definitely let you know how the appointments go. Both are referrals from other doctors, but I haven’t found someone I really trust enough to forward onto someone else.
Unfortunately my symptoms are the same as everyone is describing. My voice is starting to be affected. I am uncomfortable and very nervous. Very thankful for this website.
It is funny you mention the nerves being wrapped around the bone. In writing down the questions I have for the doctor, this is one of mine> I was not sure they could do anything about this. Glad to hear that is sounds like they can
I don’t know that some of the members come on here now, so you may well not get a reply. I’ve checked the doctors list & there’s nothing in your area, so you may well have to travel. There’s several in Philadelphia if you are prepared to travel? (A couple of members have found out about doctors on a facebook group- I’m not on FB so can’t look, but don’t know if you are?)
Thanks Jules. I called a couple from the list provided on here. One is in VA, but can’t see me until April. I have a call into one in PA and MD as well.