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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.

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Replies to "For the past 4 years, I’ve been really struggling. I’ve gone through so many doctors, yet..."

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.