Welcome, @baker1227. I moved your comment to this existing discussion about Eagle Syndrome so you can connect with other members and where they get care:
- Anyone diagnosed with Eagles Syndrome: Where and what treatment? https://connect.mayoclinic.org/discussion/eagles-syndrome-2/
I was diagnosed with bilateral Eagles Syndrome 3 years ago. I was referred to the University of MN ENT. I saw doctor David Hamlar and went with a more conservative approach. The decision was to purposely fracture the styloid on the right side as that was the one giving me pain. It was a successful treatment for me.
@kathy513, Hello. In 2017, I suffered with increasing one-sided ear/throat pain, I was diagnosed with Eagles Syndrome (ES). This, after several nasal endoscopies (NE) produced numerous false diagnoses. After insisting on a CAT Scan with scan reluctant doctors, (one doctor insisted I "Did NOT have cancer) the diagnoses came back ES. Praying to our creator for an answer, finally produced the truth. Praying gave me the definite feeling that ES was not my problem.
How several radiologists can read a CAT Scan and get it so wrong is suspicious, to say the least. Finally, an Indiana University ENT did another NE and saw the tumor down by my vocal cords. Again, how several prior doctors and several NEs produced conflicting and wrong diagnoses is very disappointing. This University ENT performed the same exact NE as the others had done, yet he saw the tumor immediately. The tumor of the "Pyriform Sinus" was extremely visible on the scan, which was shown to me on the medical device screen.
So, obviously my advice to anyone with these diagnoses, is to continue on with second, third and even fourth opinions. The ES diagnosis may just be a "grasping at straws" diagnosis.
If you are interested, there is much of my journey written in my profile posts. To clarify, the other diagnoses were everything from "arthritis in the neck," to "needing a tonsillectomy." I do not even have tonsils.
I'm not comfortable giving out my doctor's name. In the online world, giving out a name, a city, and a health condition can make it easy for someone to identify me or others. My doctor is retiring soon anyway, so I will have to find a new one as well.
For the past 4 years, I’ve been really struggling. I’ve gone through so many doctors, yet none of them will help me. My doctor and local ENT said I have symptoms of Eagle syndrome. I got a scan back in December and my ENT said I have an elongated styloid process with calcification starting in the middle of the ligament rather than the top, which he said was very rare. He then sent me to this surgeon in hopes he could give me a styloidectomy. He was supposedly the best around me. I just received news that the doctor wont give me surgery since he works with calcification from the top of the ligament and that’s just not my case. Instead he is recommending an injection, in which he isn’t sure that will even help. I’m reaching out in hopes to find someone who can help me. I try to describe my symptoms and people just think I’m crazy. It messes with my nerves bad. My symptoms include: feeling like there is a large knife or foreign object in the back of my throat, tingling on the back of my head, neck and spine, my throat feels like it’s closing and it gets hard to swallow and breathe, it gets so bad it leads to my whole body uncontrollably shaking. I am always in pain, the best I can explain is it’s like a sharp stabbing pain in my neck. My doctor has perscribed me gabapentin. It helps a little bit, but the pain is always there. I live off that medicine, without it the pain gets so bad I feel like I am going to die. I can’t even get out of bed when I don’t have my medicine. I don’t want to live like this anymore. I’ve watched many videos on eagle syndrome and I truly feel a styloidectomy is what I need. So I hope someone can help me. The pain is bilateral, worse on my left side. Even with the medicine, I have symptom flare ups when I feel like I am going to die because I can’t breathe and the pain gets so bad. I am just losing hope. When I find a new doctor and gain hope, they always end up saying they can’t help me. Wondering if anyone else has eagle syndrome or can relate to my pain. I am looking for an ENT who can help me. Any advice would be helpful. Thank you.
I see this post is from last year so maybe you have found relief by now. It took 20 plus years and 8 doctors before I received a diagnosis. The doctor did a styloidectomy through the throat rather that from the neck. He wasn't able to get all of the excess, but it brought some relief. I also find that I have to take an ibuprofen whenever I use my arm a lot because any swelling in the neck muscles will cause the styloid to press against nerves and make me dizzy and sick. I have also found there are only a few doctors that truly specialize in Eagles Syndrome in the U.S. I would consider doing some on-line research to find them and maybe see if they will do a zoom appointment. There are ones in Illinois, California, and Florida that have videos on-line. There is no excuse for you to have to suffer like that. Hope you find some help.
I was diagnosed with bilateral Eagles Syndrome 3 years ago. I was referred to the University of MN ENT. I saw doctor David Hamlar and went with a more conservative approach. The decision was to purposely fracture the styloid on the right side as that was the one giving me pain. It was a successful treatment for me.
@price24
They put me under and purposely fracture the styloid. That was it. Great results for me. Dr. Hamlar said he has about an 80% success rate with this option.
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Welcome, @baker1227. I moved your comment to this existing discussion about Eagle Syndrome so you can connect with other members and where they get care:
- Anyone diagnosed with Eagles Syndrome: Where and what treatment?
https://connect.mayoclinic.org/discussion/eagles-syndrome-2/
I was diagnosed with bilateral Eagles Syndrome 3 years ago. I was referred to the University of MN ENT. I saw doctor David Hamlar and went with a more conservative approach. The decision was to purposely fracture the styloid on the right side as that was the one giving me pain. It was a successful treatment for me.
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1 Reactionwhat a great story! Can you give us the name of the Indiana U doctor that diagnosed you please?
I'm not comfortable giving out my doctor's name. In the online world, giving out a name, a city, and a health condition can make it easy for someone to identify me or others. My doctor is retiring soon anyway, so I will have to find a new one as well.
I see this post is from last year so maybe you have found relief by now. It took 20 plus years and 8 doctors before I received a diagnosis. The doctor did a styloidectomy through the throat rather that from the neck. He wasn't able to get all of the excess, but it brought some relief. I also find that I have to take an ibuprofen whenever I use my arm a lot because any swelling in the neck muscles will cause the styloid to press against nerves and make me dizzy and sick. I have also found there are only a few doctors that truly specialize in Eagles Syndrome in the U.S. I would consider doing some on-line research to find them and maybe see if they will do a zoom appointment. There are ones in Illinois, California, and Florida that have videos on-line. There is no excuse for you to have to suffer like that. Hope you find some help.
@sanderson7635 , what treatment did you undergo?
@price24
They put me under and purposely fracture the styloid. That was it. Great results for me. Dr. Hamlar said he has about an 80% success rate with this option.