Hello, I am suffering from eagles syndrome for last 2 years. I have not done surgery yet.I am 24 yrs old and a student. I fear, fear a lot.For the 1st one year I thought that I was having cancerofobia.It's affecting my career. I fear surgery a lot. My question is for how many years one can be symptoms free post surgery?
Thank you.
FEAR--- False Evidence Appearing Real. Many are symptom free for life, but not all. Sorry that you are so young and experiencing this. One of our members is the mom of a small child around 9 or 11 can't remember. Her son is much better since surgery. Keep reading the discussions and hope you find what is best for you. It is pretty sure that the only cure for Eagles is surgery. When or if you get it is purely a personal decision. Check around for experienced surgeons and when you just don't want to deal with it anymore, have the surgery. Several of our members are experiencing the same traumatic fear. Most of us do, really. Hope you find the best answer for you soon.
Thanks emma mam for replying. Here experience doctors are very less.That's the problem. The 7th doctor diagnosed my disease after 7 months of suffering. At this stage of my life, as it's a crucial time of life for anyone ,it's hard to make a decision. More than physical damage it has made me mentally sick.One question.. if I can live with this problem bearing the pain will there be any other problems??
emma said:
FEAR--- False Evidence Appearing Real. Many are symptom free for life, but not all. Sorry that you are so young and experiencing this. One of our members is the mom of a small child around 9 or 11 can't remember. Her son is much better since surgery. Keep reading the discussions and hope you find what is best for you. It is pretty sure that the only cure for Eagles is surgery. When or if you get it is purely a personal decision. Check around for experienced surgeons and when you just don't want to deal with it anymore, have the surgery. Several of our members are experiencing the same traumatic fear. Most of us do, really. Hope you find the best answer for you soon.
Whether or not you develop other problems depends somewhat on the angle of your extended styloid process(es). Sometimes the styloid process will curve into the area of your throat and cause swallowing problems & throat pain. Sometimes it grow at other angles that cause it to poke into your carotid artery, jugular vein, and/or vagus nerve which can cause blood pressure issues, heart palpitations, etc. ES generally does not cause death, but if your styloids begin tangling w/ the vascular tissues, your symptoms can be much worse. I had one removed that was causing vascular problems. I'm having my second one removed in a week as it has grown into my throat area. I got one of each. Lucky me! I am a proponent of surgery. It has been a good experience for me. My doctor's philosophy is - when ES is impacting your life and keeping you from being to do what you enjoy or need to do, then it's time to have surgery. I was there.
I hope this helps you. I, too, am sorry you have this at such a young age, but then your youth gives you an advantage when it comes to healing so if you choose to have surgery, you'll most likely heal more quickly than an older person would.
Thank you isaiah for sharing your experience. God bless you.
I've not had surgery yet, Sabya, but will be later this week. I thought when I was first diagnosed and read about the risks of surgery that I wouldn't consider it, I would try to live with the pain. But the pain does grind you down, especially when you can't sleep with it as well. I was prescribed amitriptyline which has helped with the pain quite a bit, as I got neuralgia like pain along my jaw, teeth and up the side of my head. You asked if it might get worse- that's different for everyone, but from my experience- yes. What made me decide on surgery in the end was the worsening symptoms as the ES became vascular- I've had scary symptoms because the styloid process is now compressing the jugular veins. That definitely made my mind up; if I leave it now the intracranial hypertension (increased pressure inside my head, caused because the blood can't drain properly) will worsen, and I've already noticed vision problems with one eye, so I don't want to risk permanent damage.
As Isiah says, you are young and would probably heal a lot quicker than us 'oldies' ! Another reason why I wanted to do mine, before I get any older! But I have found a good surgeon who I have confidence in, and that makes a difference too. Have you looked at the list on here to see if there are any experienced doctors near you?
Good luck with your search and God Bless.
I have not found a good surgeon near me and that’s why I am hesitating for surgery. I have symptoms like jaw pain, teeth pain, little swallowing problem, cannot view the sky freely heading upwards, sometimes neck pain, sometimes headache etc. May be of my young age I am digesting the pain. But what structs in my mind is that after surgery the styloid will grow up again after few years. Then shall I be doing surgery throughout my entire life?? I really feel hopeless. However I pray for your successful surgery. God bless.
Thank you Sabya! I can understand your hesitation for surgery if it's hard to find a good doctor. Have you tried any medication for the pain- there are some which can help if the pain is from nerves being affected by the styloids. It sounds as if you have the same jaw and teeth pain I've had, which has been helped a bit by medication.
There have been a few cases where the styloids have grown back, so people have had to have more surgery, but it's not always the case. Unfortunately you don't always hear about the success stories as often people don't need to come on here for support, so don't keep in touch. So there could be lots of people who's surgery was successful and they've never grown back. I'm thinking that I'll cross that bridge when I come to it, and worry about that if it happens.
We do all understand how you're feeling, and have all been there feeling scared for the future. To contemplate the rest of your life with pain, and not being able to do things others take for granted.... But hearing the success stories on hear and trusting God have kept me going.
Praying for you x
Thank you. My recent X-ray of cervical spine says straightening of cervical lordosis suggest muscle spasm. I consulted an orthopedic doctor. He told me to do some exercises. But that’s not working that much. One question, in which medical department this Eagles syndrome lies under ?? I have consulted ENT surgeon and orthopedic surgeon.
Typically ENT doctors take care of Eagle Syndrome surgery. Some people on this site have had doctors in other specialties (skull & neck) do theirs. Unfortunately, not all ENT docs are informed about ES so you'd have to search to find one who is familiar with it if your ENT is uninformed.
All great advise given!! Yes doctors who treat ES can be hard to find. I am having both sides done June 3 in Chicago because we could not find a treating doc in Michigan where I live. If someday you have to travel for help, many large hospitals can get you a better rate on a hotel. Perhaps one day you should consider some counseling for the fear as you navigate the system of health care
Thank you everyone for your kind and sincere advises. God bless :)
Sabya, so sorry you cannot yet find a doctor. I have a few ideas that may help you find a doctor if you have not yet found one.
Try any medical university that you may have access to.
or
Look for Eagles syndrome, elongated styloid, resection of styloid, surgery for eagles syndrome, surgery to remove styloid, and any other similar titles on the website and try to find research papers that may have been authored by a surgeon in your country or area. I think that I saw some articles from India when I first researched almost 3 years ago. I hope you find help soon. If and when you do, please let us know who you found, other people in your country would be happy to know if and when they find this site. And please, post your questions or thoughts or encouraging words. We want to hear from you and hope to hear that you have found some help.