I was diagnosed in 2012 after feeling a lump in the back of my throat, by an ENT. He did a CT and said he THINKS its ES. He said its rare and surgery cant be done cuz its right on my main artery. Well 2 yrs later, this spring, he did another CT, he said no change. It bothers me SO much. I cant keep going on with this pain and discomfort. I asked him if it can cause a stroke he said no. I asked if its vascular he isnt sure. WHAT THE HECK!? This is an ENT. Now he says he isnt 100% sure it is ES but it is a calcification. I can feel it with my finger...in the back of my throat. Its right behind/under the right tonsil. Is that where you guys feel it? :( I get bad headaches and back of the head pain. I am so scared Im going to die from this. I only ever talked to 1 other ES person and she said she's 52 and had this since she was 5. I worry that we have different things going on. I then read an article that ES can be from vitamin deficiencies which I do have. Im trying to get my D up and PTH down. Ugh sorry for rambling, just want to talk to others who live with this. Should I be this scared and worked up? Or am I just freaking out for nothing.
Sorry to hear this
I have ES I’ve had one of my styloids removed it had fused quite Badly to the surrounding areas this was done orally since then I’ve gone from having migraines 4x a week to 1 or 2 month
My surgeon had to remove a large part of my sinuses at least that’s what I think he said as it has calcified
I understand how you feel my brother also has been diagnosed with ES and cannot find a doctor to operate on his large styloids
Thinking of you Debbie
Hello Lisa, I know how you feel. I am scared and upset and frusterated and mad and in pain unless I am on Norco and Celebrex (which is not how a person wants to spend their life!!). We are all going through was you are and this support group is the best thing that ever happened to me. You will be supported here and the members will answer all your questions, concerns and give advice to help you deal and treat what you are going through. It is like finding a needle in a haystack to actually find a doctor that is compentent in helping you. Look at the data base. Find one that is around you. I live in Chicago and there is a doctor on the data base that is out of the University of Illinios in Chicago. I have an appointment to see him in the beginning of the year. I have have another doctor (Dr Forrester) in the Ohio Clinic that I have an appointment in December. I am seeing a doctor tomorrow at Loyola University (in a suburg of Chicago), so I am hoping and praying he is one of the competent ones and not one that sees me, tells me although I DO have ES my symptoms have nothing to do with it and put me on more medication (that doesn’t help) and tells me to call in a couple weeks!!! I sometimes feel more like a yacht payment than patient!!
Well, Sorry for the rambling but the moral of the story is…Listen to the advice the group will provide. I knew absolutly nothing about ES before I got in the group and now understand exactly whant ES is and what I need to do to get this taken care of. Hang in there!! I KNOW you can do it!!! xxxooo
Being scared is not a good choice, but taking action is. You should visit another ENT. I had the same ENT for about 7 yrs, told him about my constant pain on the back of my throat, running through my left ear, no lump was palpable but the tenderness was there. I did my own research, that's how I found out about Eagle Syndrome Support Group and here I am. Thanks to all the patients suffering from the same symptoms, and being clearly diagnose with ES, I decided to switch doctors. Found Dr. Barrow, wonderful doctor, went straight to the point. Why? Cause he himself was a patient with ES. Went through surgery with great colleagues of his. Today he's doing great. He said my pain is more due to calcification, he requested my Maxillofacial a copy of my panoramic xray, which showed what he expected. Recently I went through a neck CT, hoping I get the results next week and will be visiting my doctor in two weeks. Depending on how large the calcification is, and the location of it, you could get surgery. Your doctor needs to be more knowledgeable before he goes further. You want to make sure that's your last option, all surgery has their risks, but you won't know for sure until you get a good diagnose and treatment. Trust me, being in pain and not knowing what causes it, is nerve-racking and full of
'What If". I wish you the best, don't panic, don't be scare. Take action, move to another doctor, do your research on your area. Blessings, Ronnie
Julie, u r in my thoughts and prayers honey. U'll see, u will do fine. Keep us posted.
julie watson said:
Sweetheart I totaly understand you im the same had this thirteen years first suspected the ten month ago fully diagnosed I have es I have very bad vascular symptoms fast heartbeat miss beats along with the pain and lump in throat vasclar eagles is the most terrifiying thing I often think bad things will happen im still here after all this time I have surgery in ten days im praying it will rid me of these horried symptoms its taken me a long time to get people to understand harder to get a doc who understood the fear I found him at salford royal manchester please keep strong and keep pushing people thought I was mad as it is so very rare and the symptoms are so many I often thought I was going mad and I was terrified I would die im still scared you are not alone I promise you stay strong x x
Hi Lisa, sorry you are having so many problem.s I also have pain in back of my head and down my arm and in face - I don't know what is causing what like you, and the doctors want me to go away because I am so "complex." I really feel for you.
Can you tell me about the vitamin deficiency thing? And does anyone else have scoliosis and stenosis like I do? Thanks again and feel better!
Hi Lisa, sorry that you're going through this but you may want to get another ENT that's familiar with ES. I've been to several who seemed very reluctant because they weren't knowledgeable about ES. I recently relocated to another state so now I'm in the same boat I was in previously, looking for another ENT. I had surgery on my right side before relocating but now the left side is giving me problems along with complications that the previous surgery triggered. Good luck on your search. Don't stress, keep pushing until you get results!
Hi April, I am too complex for the doctors also. I have so much going on it has their heads spinning. :) but yes, I also have scoliosis and stenosis.
april said:
Hi Lisa, sorry you are having so many problem.s I also have pain in back of my head and down my arm and in face - I don't know what is causing what like you, and the doctors want me to go away because I am so "complex." I really feel for you.
Can you tell me about the vitamin deficiency thing? And does anyone else have scoliosis and stenosis like I do? Thanks again and feel better!
Lisa,
I am very sorry for the pain and fear you are experiencing. I have ES but was not diagnosed by an ENT, rather my dentist was the one. He had been taking classes at John Hopkins (although I am in Indiana) for headaches and facial pain and was aware of ES from his studies. He requested a cone beam x-ray. Both styloids were elongated. In his office I went through various therapies that did help but of course did not cure the problem. Most notably, lidocaine shots in my face, shoulders, and scalp helped to relieve the pain and were covered by insurance. I also have many of the symptoms that others write about including neck, shoulder, arm pain and tingling, swishing in my ears, tingling and numbness in my face, TMJ and my face constantly spasms in a very subtle way. Also, I have issues when lifting heavy objects and hence no longer do that. That brought on a type of spacey feeling. When I didn't know what was causing all of these symptoms I too was especially fearful. Presently, I am able to have to have a fairly good quality of life without surgery, because of that dentist. What made him different was that he had gone through serious medical issues that nobody could figure out. By a fluke, someone mentioned celiac. That was his problem. Having gone through a situation of being unwell and not having answers made him a great listener, someone who thinks out of the box and very compassionate. Participants to this site have mentioned various doctors who are aware of Eagles. I think if your doctor is not experienced with it then he may not be the correct doctor for this situation. That is not to say he may not be fab for something else.
I am happy I tried alternative therapies and hopefully I won't have to have surgery but that remains to be seen. I wish you the very best care possible but I've learned that we are the ones who must seek out, and make decisions regarding our own care and health. Best wishes.
Sweet C and April, I have scoliosis and stenosis also.
Sorry we are all in pain and complex!! Not good place to be. Robin, do you know if your dentist knows anyone in NYC who could work on me? I am not looking for any more surgeries if I can possibly help it. Thanks so much.
I wonder if the scoliosis has something to do with this...
heidemt said:
Sweet C and April, I have scoliosis and stenosis also.
Lisa,
You need to see one of the doctors listed on this site and get it removed if you are symptomatic. You don't need to listen to them not knowing, but you do need to make the decision to get it removed and keep going until you find a doctor to do it.
Good luck.
Lisa, I agree with Ear Mom. You have to keep plugging along until you find a good doctor to do the surgery. Just to give you some peace of mind, I had vascular Eagles on my right side and I really felt like I was dying. After I had the surgery on my right side, I felt so good. It was an instant relief. You have to get the styloid(s) taken out.
Ear Mom said:
Lisa,
You need to see one of the doctors listed on this site and get it removed if you are symptomatic. You don't need to listen to them not knowing, but you do need to make the decision to get it removed and keep going until you find a doctor to do it.
Good luck.
Where do you find the list of doctors who know about ES?
OK I found the list. Im in Iowa and there aren't any near me. Plus Im on disability and cant afford to travel. Can we live a long healthy life with this? I had an MRI 2 wks ago and turns out I have ES on both sides...the left one is bigger yet the right one is the one that bothers me. The ENT said its not vascular. Can you tell that from an MRI?
Also, do you guys think its safe/OK to go to the Chiro for adjustments?
Mri doesn’t usually reveal whether it’s vascular, that’s usually a CT scan -3d. No one can tell you that you will live a long healthy life and plenty of stupid Drs will even say there is no treatment and this is your life now, which is false. Surgery is the only cure. There are plenty that choose not to have the surgery though and from what I can tell they end up having symptoms for life and their overall quality of life is much less than it should be.
Each person is different. It depends on the length, where the styloids lie, and what nerves/arteries they touch. Plenty have long styloids and never have symptoms or issues. If you are having symptoms though, you do need the surgery.
Mine are very long. I had the left partially removed a month ago. The tip was growing into a vein at the bottom of my carotid artery. Once we saw that in the ct scan, it made sense why my symptoms had quickly progressed daily. (Heart palpitations, limited neck rotation, severe skull and neck pain, etc)
Have you been able to find a surgeon in a neighboring state? I know traveling is hard - I had to as well but it was so so worth it.
No we're in Iowa. :/ No surgeons around here do the ES. Ive hd 2 CTs but not sure if they were 3D. Now Im worried mine could be vascular and he lied to me. :/
Lisa, if your PTH is up, what is your calcium. I had a parathyroid adenoma. Unless you have renal disease, you probably have one bad parathyroid gland. Check out www.parathyroid.com. I personally am convinced that Eagles is closely related to issues processing calcium and thryoid issues and Parathyroid issues.
I hope your doc is not just watching your Vitamin D, Calcium and PTH while you continue to feel bad. It is Eagles and you may have two problems. I hope you get to Dr. Arick Forrest in Columbus OH. I am not sure how far it is, but I am pretty sure he can help you on both issues. Believe me if you can get to a really good ENT, you have a great chance of feeling like a new person. Friend me, if you want but I don't get online often. e-mail is ■■■■■■■■■■■■■■■■■■■. Freaking out is a symptom of parathyroid issues, so is high blood pressure, heart palpations.
I wont be able to go to OH but I found a doc in WI. Im in Iowa. I do have high pth but my cal is good...d was low at 16 but got it up to 61 and now its 34 after dropping my dose some (I was scared of becoming toxic) What else should the doc check, other than the D, PTH and Cal? I get labs done often......and a ton annually as I had weight loss surgery (Duodenalswitch.com) and have to keep tabs close. I take a ton of vitamins. They tell my my PTH is high cuz I need more d or cal to bring it up....lots of people in my weight loss surgery group have high pth. Ive always had anxiety issues. How can they test to see if my Parathyroid gland is ok? Ive had an MRI. x
emma said
Lisa, if your PTH is up, what is your calcium. I had a parathyroid adenoma. Unless you have renal disease, you probably have one bad parathyroid gland. Check out www.parathyroid.com. I personally am convinced that Eagles is closely related to issues processing calcium and thryoid issues and Parathyroid issues.
I hope your doc is not just watching your Vitamin D, Calcium and PTH while you continue to feel bad. It is Eagles and you may have two problems. I hope you get to Dr. Arick Forrest in Columbus OH. I am not sure how far it is, but I am pretty sure he can help you on both issues. Believe me if you can get to a really good ENT, you have a great chance of feeling like a new person. Friend me, if you want but I don't get online often. e-mail is mpeak54@hotmail.com. Freaking out is a symptom of parathyroid issues, so is high blood pressure, heart palpations.