I have finally been diagnosed with Eagles syndrome by an ENT. He tried to dissuade me but then pushed on the tonsillar area in my mouth and I could not speak clearly and my arm started to go up and down like a focal seizure. I have aphasia with my symptoms but this was more prolonged. I have all the symptoms of both classical eagles and vascular type. He made an appointment for me with Guardiani and Taylor at University of Maryland which is in two weeks. I also send my information to Dr Cognetti in Philadelphia. I had a CAT scan but no one ordered anything to look at the blood vessels. The ER was as stumped as the doctor and released me with instructions to see a specialist as soon as possible and that what it. I know I feel better with my head turned to the left. I am very scared this will not be fixed in time and I do not know what to do. I am also wondering if an ENT is the right type fo surgeon to fix something that is this complicated or if I need a vascular surgeon or neurosurgeon and if so how do I get in to see one? I am in a small town. Should I just go to a large city like Baltimore and go through the ER?
Peacefulbuttons, here is a possible explanation for what occurred: In patients with the vascular form of "Eagle syndrome", the elongated styloid process is in contact with the extracranial internal carotid artery. This can cause a compression (while turning the head) or a dissection of the carotid artery causing a transient ischemic event or a stroke.
I hope our members can advise you which type of doctor would be most helpful in your situation.
A person with "surgeon" in their title. Even my ENT advised me and sent me to vascular, skull-base, reconstructive surgeons since in his words he mainly works on sinus issues and felt a more experienced surgeon would be better. Even though he does deviated septum surgery. Not all ENT's have surgical experience and less have experience dealing with something like this that really isn't in the ear, nose or throat but effects them all-that's why we think that's who we should see-I did for 25 years. An ENT with a specialty in Head and neck, reconstructive and plastic surgery did my last one a year ago.
To reiterate, you have a calcified cartilage growing from the base of your skull into your throat--where it originates from should be the guide as to the kind of surgeon you have the best chance of better results. I think that's why some people (like me) who did have an ENT do surgery ended up with a shortened styloid and still all the symptoms. I never thought not removing it all the way back to where it came from was even a question. Myopic towards the symptoms not the cause I now think.
Good Luck!
Thanks for the replies. I appreciate the explanation for my symptoms. Also I am seeing Taylor and Guardiani at University of Maryland. I checked and it says they are both ENTs and both are surgeons. SO now I gues I just have to wait.
I would highly recommend Dr. Jason Newman at Penn Hospital in Philadelphia. If you are coming in from out of state, his team just did my son's styloidectomy and they were excellent. Dr. Newman uses robotics to cut the bone (whereas others use their hands which can leave jagged edges and cause other problems). My son is only a few days out of surgery, but the team at Penn were phenomenal. Just one opinion... you can "friend" me and send me a personal message if you would like more detailed information about the doctors in Philadelphia.
Hi Ear Mom,
I thought Dr. Newman just did children's medicine. Does he do adults too?
Ear Mom said:
I would highly recommend Dr. Jason Newman at Penn Hospital in Philadelphia. If you are coming in from out of state, his team just did my son's styloidectomy and they were excellent. Dr. Newman uses robotics to cut the bone (whereas others use their hands which can leave jagged edges and cause other problems). My son is only a few days out of surgery, but the team at Penn were phenomenal. Just one opinion... you can "friend" me and send me a personal message if you would like more detailed information about the doctors in Philadelphia.
Dr Newman is an adult doctor at Penn. They do NOT operate on children. They had to jump through hoops to get him approved to have the surgery at that hospital. In fact, he was the youngest child ever seen by any of our nurses or doctors. It took a few months for them to sort things out behind the scenes. We had been ready for the surgery since May. There is no one at any children's hospitals anywhere that I could find who had experience with a styloidectomy.
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peacefulbuttons said:
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