Hello! First of all, I’m so glad I found this community and appreciate all of you, especially given my ENT didn’t even know much about Eagle Syndrome when he diagnosed me a couple weeks ago. The resources here are wonderful. I have an appt with Dr Hackman at UNC in December so I’m self-managing until then. I have ossified styloid processes and calcified ligaments on both sides. My left side is the most advanced and painful though.
One big question I have that I can’t seem to find an answer to is, how fast do things ossify/calcify? I’ve had ear and jaw issues for a long time that were attributed to TMD and allergies but the painful swallowing started 6 months ago. I’m curious if I’ve had the ossification for a while or if that developed more quickly and that’s why I started having more pain recently.
Overall, I’m very interested to see if treating this fixes the horrible eustachian tube dysfunction, ear aches, and tinnitus I’ve had for so long with no relief.
Welcome, @Megs22! I’m really glad you have an appt. w/ Dr. Hackman. He’s been a great help for quite a number of our members.
No one really knows how long it takes for ossification of the stylohyoid ligaments/elongation of the styloids, but we suspect it happens gradually over some months to years. There are people who have elongated styloids/ligaments but seem asymptomatic. Our conclusion is that those of us who are symptomatic undergo some type of life event (injury, physical activity, illness) that slightly changes the position of the soft tissues in the neck which support the styloids, allowing styloids, etc., to come into closer contact w/ nerves & possibly vascular tissues which ignites symptoms. Another option is that the styloids/ligaments eventually grow long/thick/curved enough to cause troubles on their own. We do believe that if left unattended, the styloids/ligaments can continue to elongate &/or thicken which makes symptoms worsen.
Many of our members have had symptoms for years & it wasn’t until they were life impacting that they began seeking help. Others woke up one morning & could barely function. The rate of onset of ES can be as diverse as the symptoms it causes. My symptoms started as choking on food & drink & over a couple of years progressed to neck pain & a hard lump under my jaw that I could feel. Between my two surgeries (for bilateral ES) the symptoms for my remaining styloid escalated considerably. This is also a pattern we’ve noted among our members who don’t have bilateral surgery in one fell swoop.
I expect that your eustachian tube dysfunction will resolve or at least diminish once your styloid(s) is/are removed as ear troubles are definitely among the more common ES symptoms.
Hi, and welcome! You’ll get amazing information here. I’ve had quite the journey since diagnosis and ALSO see Dr. Hackman in December! I go on the 5th! Here’s to hoping it goes well for us both!
In regards to your question, you’ve gotten amazing information from other members. That said, speaking to personal experience, I can date my symptoms back as far as 15 years or more. However, something happened last Christmas that kicked it all into high gear, and ever since then it’s been a daily struggle when before, it was something that randomly flared up, seemingly without rhyme or reason several times a year. Since last Christmas, I’ve dealt with daily swelling, pain, headaches and nerve pain, jaw and ear pain, eye and sinus pressure and for several weeks this spring, I had scary neurological issues, fainting, and symptoms of vascular compression. I also went from having occasional swelling and pain to having a constant feeling of something poking into my throat, a lump that is both visible and palpable, and so on, completely overnight.
My imaging showed what the docs that’ve looked at it called the worst ES they had seen, but most had only seen it a few times in their careers so that is to be taken with a grain of salt. I see my new neurologist next week and hope he can shed some light on some of the neurological symptoms. We’re trying to figure out if they’re related to my other neuropathy, if the ES has also caused neuropathy and/or if it’s a combo of that and my vEDS. Anyway — again, welcome! I am sorry you’re dealing with this but glad you found the forum. When I joined, I was terrified. I had the first specialist that I met with virtually telling me that I needed to be in surgery in no more than a month, making me feel like I was doomed if I didn’t get it taken care of quickly. It ended up being more of a case where I needed to adjust the way I was moving and treat the symptoms, and even though they are difficult to live with nothing has gotten worse since my diagnosis in the spring. In fact, while I have days that it flares up, and I have scary symptoms, most of the time things are not as bad as they were a few months ago.
Hi & welcome! As @Isaiah_40_31 says, we don’t know how quickly the calcification happens, but sometimes with younger people it seems to happen quite quickly- one of our members joined for advice for her son, & his styloids grew back after surgery so he had to have surgery again…that’s quite rare but does happen oaccasionally.
Dr Hackman seems very well regarded so you should be in good hands!
I also agree with @slekeille , as once I got the diagnosis and got to this forum, I was able to adjust my lifestyle and pay more attention to what I do the makes the pain and symptoms worse. Only though understanding what was driving this pain and disfunction, was I able to some what manage my symptoms better until the styloidectomy.
