My doctor who I’m scheduled for surgery with March 12th claims that Eagles does not cause headaches, fatigue, and face pain. I am going for a second opinion Feb 25th. Does anyone know the physical reasons for these symptoms.
Those are very common symptoms that many of us have had. Your doctor does not understand Eagles at all. The styloid can impinge on a number of nerves as well as the carotid artery and jugular vein. There are lots of other people on here that can explain it more technically than I can. But I would suggest to you that you don't have surgery with a doctor that shows so little knowledge of the syndrome. See Emma's list for doctors with experience in Eagles.
What is his premise for the surgery, then. Who is the dr.? What did he say about CT scans? Is he offering internal or external surgery?
I agree. Get a second opinion from a Doctor with more knowledge and experience. It can cause different kinds of pain depending on what structures it is pressing against. I even had migraine auras in my eye on the affected side. That seems to have gone away since my surgery. The fatigue is from the fact that the pain never seems to be gone, you don’t get any good rest. Keep pushing forward, it does get better after surgery. As I know I have said before, no one knows your body like you! Listen to your body. There is help out there. Good luck with your surgery. I will be praying for healing.
I have had tension headaches for over 20 years side of my head above and in front of my ears and the back of my neck at the base of my skull, and top of my skull on the sides. There is a tingling or creeping sensation that runs up the back of my head. I also have extreme fatigue and am always feeling exhausted more than sleepy. It is hard to concentrate and my memory is getting worse. When I saw the doctor at the Mayo Clinic he didnt think the headaches were caused from the eagles either. They did some blood tests for infection and found nothing. He said it might be from the muscles being tense, but I find that hard to believe..
I had real bad headaches from vascular Eagles - the right styloid was compressing my carotid artery and jugular vein. It caused a lot of fatigue too.
Lifelong Eagles, I had an internal surgery from someone who wasn't experienced in Eagles and also discounted my symptoms - the surgery helped some, but then I continued to have pretty bad symptoms and had to search for a long time for someone to do a revision surgery. From my experience, I would strongly urge you to go see someone more experienced who will do an external surgery. I see you're in MA, so Dr. Cognetti in PA is probably the closest one to you. Just my opinion of course, but I would hate to see you go through all the turmoil I did after I still had problems with an initial internal surgery.
I had facial tingling, eye problems, and headaches constantly with my ES. I had surgery last week and I instantly felt a relief they next day after surgery. I'm still recovering but let me know if you need any Aid in the South Texas region.
I am truly hoping that my second opinion doctor tomorrow is more familiar with Eagles I spoke with his nurse and she said she didn’t know all of the symptoms but there were many. He has also performed the surgery before he works for Mass Eye and Ear. I called Dr. Cognetti’s office and there is no way to do a consult without going to PA. My only problem with that is I have 4 busy children and a husband who is self employed which makes it difficult to go so far to see a doctor not knowing that he will agree to the surgery either. I feel so frustrated and angry with this whole situation I wish someone had picked up on it when I was younger. Instead I’ve lived about 30 years with the symptoms becoming worse. I feel like I am caught between a rock and a hard place. The doctor I saw made me feel so small and meek which is not me at all. I am praying that tomorrow’s doctor is better! I will let you know.
Good luck with the doctor tomorrow!! It sounds like he could be good.
If it's any consolation, we've all been there with the doctor making us feel bad. There are many doctors out there who seem to get irritated at the patient if they present with something the doctor doesn't know that much about. It's incredibly frustrating. It shouldn't be this hard to find someone to help us.
I saw 6 Doctors before my diagnosis. One tried to tell me it was anxiety and gave me Xanax…then he wanted to give me a sleeping pill because I said maybe the Xanax will help me sleep.i told him no and that was the turning point for me. I am a Nurse and I work where this Doctor works. I was embarrassed and angry afterward. I am a very level headed, common sense type of person but when no one listens to you and you know something is wrong it messes with your head…literally. I was fortunate in the fact that a friend who is also a Nurse had Eagles and told me about it. I went to her Doctor. It is just so overlooked, there are so many with it that don’t know they have it…
I am a migraine patient since birth, I get them every 6 weeks and they last 5 days long. I also have daily migraines that don't go away. My surgeon told me removing my Eagle bones or which ever word you want to call them would NOT stop either types of migraines. I scheduled the surgery, but also made an appointment with my migraine specialist doctor and asked him if Eagles could cause headaches or either types of my migraines and he confirmed NO. Eagles is caused by some sort of trauma to be formed and that migraines or headaches have nothing to do with Eagles. He said they can cause some minor "headaches" but that is it. In my case Eagles made it so that I was unable to turn my head at all and they said it was because they were pinching nerves. So sorry, hope you get the answers your looking for! As for the fatigue and face pain I had that also and was told its normal it did end after the surgery.
I really, really, really, hate the "you have anxiety". So far I haven't had much luck with doctors. They are now going to try botox for the "migraines". I do not think it is "migraines". I think it is the calcified styloid ligament pressing on the caroid artery!!! Along with the headaches, fatigue, etc., I also have a lot of pain in the neck in the carotid artery area where the ligament should be near. But nooooo, I have had anxiety for all these years!
Happy1030 said:
I saw 6 Doctors before my diagnosis. One tried to tell me it was anxiety and gave me Xanax....then he wanted to give me a sleeping pill because I said maybe the Xanax will help me sleep.i told him no and that was the turning point for me. I am a Nurse and I work where this Doctor works. I was embarrassed and angry afterward. I am a very level headed, common sense type of person but when no one listens to you and you know something is wrong it messes with your head...literally. I was fortunate in the fact that a friend who is also a Nurse had Eagles and told me about it. I went to her Doctor. It is just so overlooked, there are so many with it that don't know they have it.....
My dear, with all due respect, you need another doctor.
I wouldn't trust anyone who does not recognize several of the main telling signs of ES. In fact Eagle's is so uncommon that they are still gathering information on symptoms and treatment. My doctor is analyzing data constantly. They cannot affirm one thing or the other, but definitely rulling out headaches and face pain as symptoms of ES...please. It is like rulling out vomiting and diarrhea as a sign of a stomach bug.
On the other hand, internal surgery is not the approach doctors with ES expertise favor the most.
Get yourself another doctor from Emma's list and get better.
Stay strong!
Also with all due respect: your doctor doesn't know about which he speaks. Find another one.
This dr. is not a good choice. Eagle’s causes a multitude of problems, not everyone has them all. My problems were relieved almost immediately. They included all of yours and many more. As for the fatigue, I believe mine was made worse by the bad tonsil. It was full of infection. Even tho my stylohyoid was not too long, it was calcified and square. Plus, I believe it is the size of your neck, etc., which is part of the equation. Be sure you have everything in writing.
I only had migraine auras when I still had my styloid…so I think your Doctor is wrong. The constant pain and not knowing what is wrong causes fatigue and the facial nerve runs right by the styloid. So of course your face can hurt. Eagles is not understood by those that don’t have it. I don’t think they know all the things it can and has done to our bodies just by being there. It will take a lot more people finding out they have it first.