I have been debating if & how to share my last doctors apt. It did not go well but it was with one of the doctors listed on this site & he is one of the specialists on eagles. So I have decided to share the facts & omit the unpleasant experience.
The facts according to one of the specialists: the length of the styloid process does not matter. He has removed long ones where patients got no relief from their symptoms & he has removed short ones where the patient got full relief. He said that all eagles patients have atypical face pain ( which I do not agree with nor does my son fit in that category). He said there is no one test for eagles syndrome. He said the only way to see if it is truly eagles is to take out the styloid process & see what happens. He said that in some of his patients he has noticed that the base of the styloid process ( under the ear) is very close to the spine which he believes may be the problem. In my sons CT the base was not visible. He said that some people get relief, some get worse since they are moving nerves during the surgery and some have no change. He said the surgery is very painful & you should explore all other options first & have a backup plan if this doesn’t work. Those are the facts he shared. I am willing to speak to anyone who wants more detail. Please reach out privately via " friending" in this site & emailing through this site & I will be happy to discuss our experience over the phone.
I can't remember how to 'friend' someone on this site. But I saw a doctor I'd heard great things about who poo-poo'd the idea of Eagle Syndrome being the cause of my facial pain. My right styloid is 6.6 and the left 5.8. You actually got more information than I did from my doctor visit. I was deluged with other tests/doctors to see and my elongated styloids just a one sentence mention on the 3 page summary of my office visit.
I pray your son finds relief from his pain ... I pray that for all of us.
Hopeful, just click on Ear Mom's "butterfly" here on the discussion, and it will take you to her profile page. Under her "butterfly" on the profile page, you will see the words "Add as friend" or something similar. Click the words.
I truly believe we are here to help each other. I feel a strong obligation to share any and all information as I learn it. We have all had bad doctor appointments when we have been told not nice things and it just isn't productive to dwell on it. I find even during bad visits, I always learn something. Hopeful - I hope you have since found a surgeon to do this for you so you will know for sure if it is the cause of your problems. And thanks for sharing your experience. I need the support. It keeps me moving forward.
I am so sorry that you both Ear Mom and Hopeful have had negative experiences with doctors that others have used. It does happen. I know that my own ENT who did my surgery and had Eagles himself, is reluctant to try anything else for me. He is afraid of messing with the nerves too much.
From what I have noticed from my own ENT and other discussions is that some of the doctors have their own very limited view of exactly what pain that is caused by Eagles, so if you don't fit their idea, then they don't feel that they can help. My doctor did agree to do surgery once, but still does not think one of my remaining issues is Eagles and won't operate again under any circumstances. I would not want him to either. He would help me get the necessary scans for another consult so he is not rude or anything.
What I did find interesting is the comment that some patients have the base of the styloid very close to the spine which might be the problem. I have been wondering if my remaining problem is from the spine or the styloid. My doctor suggested jaw issues so I had that checked out and one doctor said no, but I still think that also could be my problem, so I am not in a hurry to have a redo, but I sure would like a little more relief. I was doing well for about 9 months and now I have intermittent episodes again. I might try one of the nerve drugs, but most drugs make me ill, also.
Maybe, also some of the doctors get discouraged if they have a failed surgery and then they do not want to put their careers on the line. Ear mom, I sent you a friend request.
did he tell you that regardless of the total length, that he removed it back towards the skull enough to clear the tight space between the ear and the throat?
My 3cm styloid was cut back to 1cm and all symptoms were gone. My 6cm styloid had 3cm removed and no change in symptoms because 3cm was still passing through the area it was abrading and stayed tender until it was completely removed on the 3rd surgery.
Agree with him----take it out and see what symptoms are left. this is basically true for any surgery.
did he happen to mention these other options?
if he did it would it be inner-oral or external. my external ones were actually pretty painless. the internal was like an adult tonsillectomy--very painful but worth it since the ES pain was 90% gone once the incision healed and now its pretty much gone.
I agree, doctors worried more about their selves should only be mentioned in private. In 25 years I've had my share (17) of very odd--non doctor like encounters. using lots of alcohol was one suggestion.
dancermom said:
I appreciate your refraining from mentioning the specialist's name in the forum, Ear Mom. I am sorry the appointment didn't go as well as you hoped.
Sorry to hear that it didn't go too well. And thank you for being so positive!!! We all need that reminder to stay positive during this difficult journey! I went to a specialist on this site as well back in December. Like all the other visits, I knew this would be the one. It wasn't! He gave me a scope through the nose to look at my sinuses. He checked my throat and gave me two different types of hearing test. I never metioned that I had a hearing problem. He concluded that I needed allergey medicine and physical theraphy for TMJ, which I never said I had a problem with. The physical therapist agreed, no signs of TMJ. You'll hang in there, in time you will find the right doctor and hopefully your son will get some relief soon!
Ok, first things first, I have had 3 surgeries for Eagle Syndrome. As of April 2013, I have calcification on my hyoid bone again.
The only test they can do for Eagle Syndrome is MRI and a specific one where they use contrast to get the proper images. I NEVER had a CT for that. Also, radiologists have to be told they are "looking" for ES or they don't usually catch it.
This Dr. is saying everything 100%. Honestly no one is the same. I never had the styloid process removed, just shaved. I had once on each side and then on my hyoid bone but for some reason it's re calcifying already. The surgery isn't comfortable but omg, night and day pain relief! I could tell a huge difference because my headaches were gone. The clicking and catching left. I had to go through 8 dr.'s to find one that I trusted and knew he understood what he was doing. I found out by my dentist. Recently I asked my new dentist why they know about ES and normal dr.'s but my neurologist did. He said they are taught about that whole area and sometimes it's a genetic factor. I know people that had the surgery that continued to hurt but found that they have TOS.
How old is your son? I was 15/16 years old when the most horrible pain was happening. Also getting my tonsils out helped SOOOOOO much! I stayed over night in the hospital all three times but was super blessed and happy I had them. My surgeon said there is a guy in his 60's that he has done multiple surgeries on for ES. Some can deal and some can't. If he is hurting they need to do an MRI to measure the length and width. Mine had become 1.5 length and 3 cm deep. I couldn't turn my head, chewing was hard, etc.etc. If you have questions I have a million answers because I've been through it all :)
ANG - I will send you a private message. Thank you for sharing your experience. My son is 12.
ang said:
Hi Earmom,
Ok, first things first, I have had 3 surgeries for Eagle Syndrome. As of April 2013, I have calcification on my hyoid bone again.
The only test they can do for Eagle Syndrome is MRI and a specific one where they use contrast to get the proper images. I NEVER had a CT for that. Also, radiologists have to be told they are "looking" for ES or they don't usually catch it.
This Dr. is saying everything 100%. Honestly no one is the same. I never had the styloid process removed, just shaved. I had once on each side and then on my hyoid bone but for some reason it's re calcifying already. The surgery isn't comfortable but omg, night and day pain relief! I could tell a huge difference because my headaches were gone. The clicking and catching left. I had to go through 8 dr.'s to find one that I trusted and knew he understood what he was doing. I found out by my dentist. Recently I asked my new dentist why they know about ES and normal dr.'s but my neurologist did. He said they are taught about that whole area and sometimes it's a genetic factor. I know people that had the surgery that continued to hurt but found that they have TOS.
How old is your son? I was 15/16 years old when the most horrible pain was happening. Also getting my tonsils out helped SOOOOOO much! I stayed over night in the hospital all three times but was super blessed and happy I had them. My surgeon said there is a guy in his 60's that he has done multiple surgeries on for ES. Some can deal and some can't. If he is hurting they need to do an MRI to measure the length and width. Mine had become 1.5 length and 3 cm deep. I couldn't turn my head, chewing was hard, etc.etc. If you have questions I have a million answers because I've been through it all :)
I had an appt. with Dr. Samji in which he told me his standard for surgery is a styloid longer than 25mm. This is his minimum for surgery for ADULTS. Because your son is still a child AND he is over 3cm……. wow.
Thank you jayde. That is important information. I got all the paper work from Samji’s office in case I need to send him our info. Flying to CA from here would be hard on all of on top of a surgery but it is good to know where he stands on that issue if we need him. Hopefully we won’t. We are still waiting for the powers to be at our current hospital to agree to & set a date for his surgery. Hopefully we will know by the end of the week.
Thanks to those of you who have inquired as to my son's progress. His right styloidectomy was this past Monday. The surgery was successful in that they removed the whole stolid and the calcified ligament (which didn't show up on the CT). The styloid was actually 25mm and the rest was calcified ligament. I am grateful the surgeon removed both. We spent the night in ICU after the surgery and our surgical team was great. It has only been a couple of days, so it will take some time for the healing to kick in. All the nerves were wrapped tightly around this bone, so they were all moved out of the way before the bone was cut and removed. They need to settle back into place - fortunately, all the nerves were in good shape. My son has had no throat pain the last 2 mornings other than some minor pain from the intubation. Before he couldn't even talk in the mornings. He seems thrilled about that. Also, he used to have a scraping sound and cracking noises when he turned his head along with some shooting pain in his neck and sometimes into his face. This was gone the next morning when he turned his head. He was so happy about that too. His pain level has subsided from the surgery itself. As of today, his neck is swollen and the incision is a little painful, but overall he is doing much better. He still has clicking an some ear pain but the clicking is slower. Time will tell. I will keep you all informed. I can't wait to see how he feels in a week.