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Hello! I just joined today. I was diagnosed with Eagle's syndrome. Just trying to get more info on this syndrome. I have to have a surgery, and will soon. I seen a couple ENT's before I was diagnosed. 3 mos ago I had the 24 hr flu. After the flu, I always get a sinus infection. So I called my primary dr to get in to get some antibiotics. He gave me a zpac. I took for 3 days, and my symptoms never seem to get better. I had a stuffy nose, my lymph nodes on my right side were swollen, my ears hurt. The right side of my neck hurt under my chin whenever I would swallow. After about 3 weeks, I went to urgent care, because I was not feeling better. All the dr did there was give me different antibiotics. Well those seemed to work, but I had a hard line on the right side of my neck that the dr could not figure out what it was. They told me to follow up with a ENT. So I did, and the dr I seen was not a ent, she was a nurse practioner, and I needed to get in asap, or else to wait for a ent was about 2 mos. So she said it was infection from the flu, just come back in a month. I said ok. Well my right side of neck just kept getting worse and hurting more and more. So I made another appt with a different ENT. He was awesome. He did 5 different types of blood work, a ultrasound, a CT scan with contrast /wo contrast. That is when he told me I have Eagle's syndrome, I have a cyst in my sinus cavity, but it is small right now. So I have to schedule a appt for surgery. I have not yet, cause I just had dental work. So I am waiting on my gum to heal a bit before I do this. So that is where I am, just trying to get more info on it. My dr did tell me that it is very rare and he will do the surgery.
Replies to "Hello! I just joined today. I was diagnosed with Eagle's syndrome. Just trying to get more..."
It took doctors two years to figure out I have Eagles syndrome. You need to find a good head neck surgeon who has at least done a few of these surgeries. I was very lucky to find a doctor at UNC Chapel Hill who is trained in Robotic Surgery. I researched and read all I could and everyone who had it said you have to do external surgery not intro-oral. That is because there are few surgeons trained on how to do this surgery with a robot. I had bi-lateral intra- oral surgery on November 11, 2020. I can tell you that compared to all the cases and experiences I read about. I had one of the best outcomes.I am 95% better. With the intra-oral ROBOTICS SURGERY the doctor can see more and be more precise. I had no infection, no nerve damage. etc. If you do the extra- oral they are cutting you through the outside of your brain of neck. The importance I found was using the robot and again very few are trained on this. My surgeon has done a few surgeries on this. He also holds one of the highest honors when other doctors vote on who they would want to do there surgery if they had to have it. Unfortunately there is not a lot of surgeons or enough information out there. I would never do the intra oral personally (and I am not a doctor or any medical training) just speaking from talking with others who have been through it and other head neck surgeons without it being robotics. My styloids were pressing on my arterial artery and I got the wildest headaches I have ever experienced. Like electrical shocks and sometimes like someone was stabbing me in my head. I had a lot of other symptoms but this was the one that I really thought I wasn't going to be here long. I basically had to lie in bed most of the time and not move until they discovered what was wrong and had the surgery. Luckily my surgeon was also a vascular surgeon. I hope you can find a great doctor who can help you and get better soon!
Best of Luck,
Adriene
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Hi. Mine started with a bad cold and spiraled from there. I suggest going to the website LIVING WITH EAGLE. There is a lot of information there. It will turn up in a Google search. Good luck.