I suffered for two years. I saw 8 different Doctors who said, "everything looks normal there's nothing wrong with you". They even recommended I see a Psychiatrist, which I did. Four different Emergency Rooms sent me home to suffer because they found nothing wrong. I was even questioning myself. Half of me wanted to give up. The other half of me said that I had to find someone who could fix this.
You know your body better than anyone and you know when things aren't normal. Don't get discouraged. Be kind to yourself first. Know that there is someone out there that understands and can help. After reading stories of many people who had suffered years with this problem, I decided that I couldn't give up. Anything you can do to sooth your throat or relieve your symptoms; even temporarily, gets you a little closer to a cure. I used heating pads, Anti-Inflammatory medications, Numbing sprays, and warm tea. I had to stop using My CPAP machine intended to help with sleep Apnea. The pressure within my throat was intolerable. I thought my airway was swelling shut and it hurt and no one cared; Until I asked my dentist to help me with a 3D CAT scan. He lowered it, and there it was as clear as day. My styloid ligament was solid from the styloid process, just under my ear, to the hyoid bone just over my voice box. Its was unilateral; just one side was calcified. As it pulled my voice box to the left, my throat was in spasms on the right side trying to correct it. My Dentist was a huge help. He could have said no but he didn't. Someone was finally listening to me. I made an appointment and went armed with my images. My wait and my suffering was almost over. I've listed the great Doctor's of The James Center, in Columbus, Ohio in my profile with a phone number. It is serious. Don't let others minimize your pain. If they had your pain, they would be begging people to help. Be your own health advocate and arm yourself with as much information as you can find. God Bless and best wishes to everyone dealing with Eagles Syndrome.
What an awesome post. I am so happy for you that you finally started believing in yourself and got to the bottom of it. I think it's really a shame that Eagle syndrome patients go through so much with their doctors. What did your psychiatrist say? Did s/he point out that your problem was physical, not mental? I can only hope so. I was also told to go to a psychiatrist (for another rare condition I have, because the doctors couldn't find anything wrong) and refused to go because I knew my problem was physical. I also went to the ER multiple times (thinking I was having heart attacks) and was always sent away without answers.
Way to go- you stuck with it and finally got help! I am so happy for you. How are you feeling post-op?
I contact you becouse I have very uncommon symptoms and I'm not sure they are from eagle's syndrome.
The main symptom is a discomfort that has affected my ability to sing and speak freely: I feel like a costant cramp in the left side of my throat. the strange thing is that on ct scan shows more calcificartions on the opposite side (right one). I read your story...you said your voice box was pulled in one side by stylohyoid and you felt the cramp in the opposite one.
Could you explain like what was the sensation did you feel?
I'm in a very undecidable situation becouse I don't know what to do: if have surgery and in what side first...
What an incredible woman you are and what an empowering story you have!! Thank you so much for your inspiration and words of hope
I, too, am a product of the James Center in Columbus!!! Dr. Forrest was the 26th doctor on my quest for a solution. I had also adopted the same philosophy you had about becoming your own advocate in order to find a correct diagnosis! (And ironically enough, it was a dentist, a tmj specialist, that referred me to Dr. Forrest.)
This is what I love about this site, it isn’t about the wah-wah-wah :’( poor me! It’s about what we’ve overcome, how we used to feel and what it’s like today. With our stories we can offer hope and possible solutions.
Thank you once again for sharing your success and hope ️
I contact you becouse I have very uncommon symptoms and I'm not sure they are from eagle's syndrome.
The main symptom is a discomfort that has affected my ability to sing and speak freely: I feel like a costant cramp in the left side of my throat. the strange thing is that on ct scan shows more calcificartions on the opposite side (right one). I read your story...you said your voice box was pulled in one side by stylohyoid and you felt the cramp in the opposite one.
Could you explain like what was the sensation did you feel?
I'm in a very undecidable situation becouse I don't know what to do: if have surgery and in what side first...
I contact you becouse I have very uncommon symptoms and I'm not sure they are from eagle's syndrome.
The main symptom is a discomfort that has affected my ability to sing and speak freely: I feel like a costant cramp in the left side of my throat. the strange thing is that on ct scan shows more calcificartions on the opposite side (right one). I read your story...you said your voice box was pulled in one side by stylohyoid and you felt the cramp in the opposite one.
Could you explain like what was the sensation did you feel?
I'm in a very undecidable situation becouse I don't know what to do: if have surgery and in what side first...
What an awesome post. I am so happy for you that you finally started believing in yourself and got to the bottom of it. I think it's really a shame that Eagle syndrome patients go through so much with their doctors. What did your psychiatrist say? Did s/he point out that your problem was physical, not mental? I can only hope so. I was also told to go to a psychiatrist (for another rare condition I have, because the doctors couldn't find anything wrong) and refused to go because I knew my problem was physical. I also went to the ER multiple times (thinking I was having heart attacks) and was always sent away without answers.
Way to go- you stuck with it and finally got help! I am so happy for you. How are you feeling post-op?
Praise God! <3 Im so happy you found someone who believed you. I have seen over 12 doctors in the central Ohio area and Marysville since 1992. I have suffered from the pain and agony since I am 12.The second to last ENT doc I saw in 2012 was from OSU and didnt "see anything" in my mri. (as usual) Why did I expect that maybe out of all hospitals OSU would help? I am so frustrated as no one has helped me. Nothing works for the pain and swelling. I have thought that death would be the only answer, especially over the last few years as I now get food stuck and have to "hack" it back up. people look at me weird and say, "Gross! Why would you do that!?!?" I tell them I'm not trying to be rude but the food isnt going down and it gets stuck from the "lump" in my throat. :( I dont know what options I have anymore.
If food is getting stuck, It could be scaring and narrowing from acid reflux. My father had this same issue. You need to see a gastroenterologist and have an EGD done. They will sedate you and put a camera down your throat. If they find a stricture (scaring) they can stretched it with an inflatable balloon. This widens the opening at the top of your stomach and makes it easier to swallow. I've also had this done.
to Luca from Italy, Sorry for the confusion. The Calcified ligament needs to be removed. Mine was the size of a pinky bone. The pain stopped immediately. Of course, I still had pain from the surgery but it was nothing like the pain from eagles syndrome.
I contact you becouse I have very uncommon symptoms and I'm not sure they are from eagle's syndrome.
The main symptom is a discomfort that has affected my ability to sing and speak freely: I feel like a costant cramp in the left side of my throat. the strange thing is that on ct scan shows more calcificartions on the opposite side (right one). I read your story...you said your voice box was pulled in one side by stylohyoid and you felt the cramp in the opposite one.
Could you explain like what was the sensation did you feel?
I'm in a very undecidable situation becouse I don't know what to do: if have surgery and in what side first...
Thank you. I will have to look into that. I was told I had Eagles Syndrome by my pain management doctor. Idont have acid reflux but will still talk to my pcp about it. I have had pain in my right jaw and ear, right sideof neck and IN my throat as well. The pain is from a "lump" like a chicken bone stuck back there type of feeling. Thats where my food gets stuck. :(
What a wonderful post to read So glad you finally found the support & help you needed, such a shame you had to fight so hard to get there.
Your wedding photo is beautiful
My goodness I don’t know if you’re still on this group and I’m brand new here but just happened to land on your post so brilliantly said and exactly what I needed to hear right now thank you. Hope you are feeling wonderful.
️