Hi everyone and thank you for allowing me to join. I just want to briefly tell my story of living with ES. I was diagnosed after a year of not knowing what was wrong with me and during this time my symptoms were filling like I had something in my throat that would make me feel like I could not breathe but yet I was breathing I had it excruciating back neck pain along with very painful ear, blurred vision, and I was passing out with drops in my blood pressure. Approximately two weeks prior to getting diagnosed, I started having chest pain then when I was diagnosed the ENT did surgery for me in two days after that immediately the feeling that something was in my throat was gone ear pain better no longer passing out and overall just a lot better, but I come out of surgery with horrible worsening chest pain than I ever had prior to surgery. My surgery was made 2023 and two this day. I still have bad chest pain. The chest pain has been constant this whole time. I have had multiple visits with my surgeon, explaining and begging for help from my chest pain and we were not able to get anywhere During this time as the months went on, I started having pain in my tongue again I know that feeling all too well and I know that is my gloss pharyngeal nerve. I had a postop CT scan without contrast and took it to my doctor, who finally charted in with my last visit That it is possible I still had compression of my gloss and or vagus nerve as well. He also charted that I still have slight calcification on my right side and my right side is longer than my left so he said he would go back in and take a little more off of my right side but I decided to get a second opinion so I seen Dr. Hackman And I am scheduled for surgery with him February 9th To have my right side done. I now have terrible ear pain along with neck, pain and my chest pain. I can understand my ear, pain and neck pain being related to eagle syndrome but I am worried that surgery will not correct my chest pain. I have asked about chest pain before, and it does not seem to be a real common symptom. Has anyone else experienced chest pain? Some others have described it as heaviness, but mine is very painful and it does not come and go. It’s constant. If my first surgery took most of it off and the doctor said I only have slight calcification. Would that be enough to give me such bad symptoms? I have told this doctor that I’m going to have surgery with Dr. Hackman and he told me that he thinks it’s a very small Chance that it’s going to help me. I’m sorry I tried to keep this brief, but there is nothing sweet or short about Eagle syndrome!
Welcome to our forum, @Prather3000. It’s very hard when the surgery we hope will bring total symptoms healing doesn’t. When I read your profile story & now your first post, the thing that came to mind is that it could be your vagus nerve causing the chest pain. I’ve had chest pain caused by my vagus nerve though it isn’t constant. I used to think I was having a heart attack when it happened. It wasn’t until I had ES & learned about the nerves that can be affected by it that I concluded this intermittent chest pain was coming from my vagus nerve. I’m not a doctor so please don’t consider this a diagnosis, just a suggestion of what’s possibly causing your pain & it is one of the things your previous ES surgeon suggested as well.
Since your right styloid is causing other problems, it definitely could be causing the glossopharyngeal & vagus nerve pain. I had glossopharyngeal, vagus, trigeminal, facial & accessory nerve pain/symptoms when my styloids were long. One thing we tell our members is that it isn’t always the length of the styloid(s) that cause symptoms. It can be due to how thick, angled, curved, pointed, or twisted they are i.e. the styloid shape alone, apart from its length, can cause significant symptoms. Some people have normal length styloids but calcified stylohyoid ligaments which cause the same type of symptoms as elongated styloids. Were you ever told your stylohyoid ligaments are calcified or only that your styloids are elongated?
Some of our members who’ve had surgeries where the styloids weren’t cut short enough have needed to have revision surgery which sounds like what you may be doing in seeing Dr. Hackman. If you have a question as to whether or not the remainder of your left styloid might be contributing to your current symptoms, it would be good to get his opinion.
Thank you for sharing your thoughts and experiences with me. I was told by my surgeon that he removed a ligament so I believe I must of had calcification of ligament. You described your chest pain as interment and that’s been mostly the case of anyone else I have spoken to about this. My surgeon just kept telling me repeatedly that I didn’t have ES anymore but when I looked at my CT scan in 3D and sent him the pictures he did say that mine appeared thick and he charted that as well in my last note.
So sorry that you’ve had surgery and it’s not helped! If your surgeon removed the ligament but maybe not shortened your styloid, & if this is quite thick then it could cause symptoms- the nerves exit the skull base through a small hole close to the styloids, so it’s easy to see if someone has a thick styloid or if it’s angled how it could irritate those nerves.
It might be worth as @Isaiah_40_31 says asking Dr Hackman if he thinks it’s worth having the left side shortened more as well as the right side removed?
I believe he will do the left side if I’m still symptomatic after having the right side done. To me this is all just so crazy! Before I was diagnosed, I was passing out my blood pressure would drop so low and I had a really bad seizure like episode, but I don’t think it was a true seizure, but it appeared to be one to others But I was not real sleepy afterwards, and I could remember it. After my first surgery, my blurry vision was resolved, and my neck pain was resolved along with no more passing out, and the feeling that something was in my throat, and I could not breathe was gone, but my surgery was last May and now my vision is very blurry again and the neck pain is coming back, stronger and stronger. I am trying to be positive, but I’m so nervous that surgery this Friday will not heal me but the other hand I tell myself it has to Because I was so much better with the first surgery and now I just need to have the rest removed. I don’t think very much was taken off the first time. Dr. Hackman is doing my procedure and he was very kind to me the day of my appointment and I have heard good things about him but I’m still nervous for surgery since I only met him once. I’m a little confused about the ligament I don’t know if my first surgery all the ligament was removed or not and is that even possible? Dr. Hackman said he is going in and removing the styloid. Does that mean the ligament is no longer attached to it? Would he know? Can a ligament still be an issue for me?
I believe Dr. Hackman will remove whatever calcification he sees in your neck related to your styloid/stylohyoid ligament. Will you have a preoperative appt w/ him? If so, you can ask him if he will remove other calcification he sees besides the styloid. If you won’t see him before surgery, you can call his office & ask the question & request an answer before surgery, or if there’s a patient portal where you can leave a message, that would be even better.
Styloid elongation can be caused by stylohyoid ligament calcification i.e. it’s the ligament calcification that causes the styloid to elongate. My guess is that’s what’s happened in your case so when Dr. H says he’ll remove the styloid, that includes the ligament.
It’s encouraging that your symptoms were helped with the first surgery, it could otherwise be that there’s some scar tissue or otherwise that the styloid has grown back- it can happen occasionally. Hopefully Dr Hackman will be able to reassure you & see what’s happened with the right side…