Real sucsess stories with eagle syndrome? symptom free life?

I think that in most cases when something is sucsesful people just don't camplain anymore, they're living their live and I just wonder is there anybody after this kind of surgery who is completly symptom free? Like really nothing is going on and they can completely forget it?

Do you know any story like this?

I am still cinfused, and doctors still not helping me. I feel that something is wrong, but it's not really a pain right now, not like it was, it's just strange feeling of having something in my neck ( yes, I feel it more in my neck than throat, and stil have hyperacusis and tinnitus, and headaches, pain behind the eye now is more like tingling in the corner of my eye and I have bloodshoot eye and sometimes lazy eye. I've read here that some people had symptos simmilar to horners syndrome and really different than mine, but I'm really curious how many people are really symtoms free, because I stll hear ( also from the doctors ) that it might not help and if I don't have real big pain that they sugest to not go udrer the knife. But I still feel that maybe now it is not so painful, at leats I thin it's not "nerve pain" but there is for sure something wrong, and something is always clicking and crunching at the base of my skull, behind my ear. I don't know what to do. I think I will decide to do the surgery but i really want to know is there anybody completely symptom free??? ( looking for people who had surgery, even those whit non-specific symptoms )

Are you there?? :)

Usually the people that are cured don't come back to the forum, because like you said, they are living their lives. From what I've seen, people are improved, often drastically, with surgery, but they may not be completely symptom free.

Hi. Eagle's syndrome is a confusing condition. I can only recommend surgery - had first 2 years ago and just had second a few days ago. Make a list of symptoms and see if they match any facial neuralgias of just simple pain from having a hard thing in your neck. Then get CT scan and then look for the very best ENT surgeon your city has to offer to do the op. Someone who understands that Eagles' Syndrome exists and has experience to deal with it proficiently and sympathetically - NOT dismissively!

Remember that that part of the body is called "Tiger territory" or "Lions' Kingdom" because it is extremely dangerous to fiddle around the jugular vein, carotid artery and 12 facial nerves, and a lot physicians prefer not to. But, it doesn't mean that a perfectly normal lifestyle is not attainable. If, as in the case of my first styloid hyoid ligament calcification (RHS), it interfered with most of the facial nerves so I had ossopharangeal neuralgia, trigeminal neuralgia and a half a dosen other neuralgias, ears making stange noises, as well as just normal physical pain that one gets when a hard thing is stuck in your head and pushing against your stylo hyoid bone that affects your throat and swallowing. I was prescribed Neurontin and Tramahexel which did help - but the surgery certainly was the trick. Once the calcified ligament was surgically removed I could then look at ways of bringing about a comfortable regime to my particular post op condition. The scar tissue can be a mission. A mix of Physio and Chiropractics (including massage, sonar, lazer, and dry needling) keeps me flexible and comfortable - and I don't need it all the time.

My surgery was last November. I had a left sided transoral styloidectomy. My healing was complicated due to me going into respiratory arrest in recovery. I was on a vent, which caused my stitches in my throat to bust, which lead to bleeding and so on. But almost 1 year later I am symptom free on my left side!!! No numbness, no first bite syndrome. I do have VERY mild ear pain from time to time, but otherwise no complaints

My son had his styloidectomy on one side in August and he is symptom free on that side. He had elongated on both sides and has had a few days with symptoms on the other side. But overall, he is 95% better so yes, there are success stories.

I had right styloidectomy May 13, and left styloidectomy June 24, 2014. When I woke up I knew immediately that so much of that incredible pain and pressure was relieved. I am slowly backing off the tramadol and lyrica. My muscles (mouth, face, neck, shoulders, etc.) are slowly learning to adjust and to heal. I am finding that it takes a while for the muscles and nerves to heal. But I am definitely feeling so lucky to have found this site which led me to a surgeon who understood that there was a possibility that he could give me my life back. He is the first to say there is not much known about Eagle Syndrome, but as he put it, there was no reason for those to be all the way down in my neck. Surgery is definitely the way to go, but find someone who knows what they are doing.

Congratulations Looking for HELP! We still battle daily whether or not to do the other side for my son. He had symptoms again this morning and then they went away. We are still on a bit of a roller coaster but overall those symptoms are nothing compared to what they were before the first surgery. I am happy to hear you had both sides done and you are already feeling better. This is a WONDERFUL site with amazing people on it. Without it, my son would also still be debilitated. Now he plays and laughs and attends school. It is an absolute gift....

I have been symptom free for 24 years from my right side styloidectomy. Had pain for 1 1/2 years and when I woke up from surgery all my pain was gone. The left side is relatively symptom free after the last surgery a year ago. The first 2 attempts on the left side were total mess-ups due to doctors who forgot what they cut me open for. But don't let that scare you off-it didn't me, I was going to have that thing removed no matter what since I knew what relief could be. So it as good as it can be considering the option of leaving it there and the after effects of bad surgery.

Sounds like you might be in the middle of something calcifying. These thing can't possibly grow from 1cm to 7cm overnight; or the stylo-hyoid ligament calcify. These processes occur over time.

Have you had any x-ray or ct of area to give an experienced doctor a idea. the "this might not help" is one of those disclaimers-but if they do it well and know what they are doing (and you have ES) you should feel the difference right away.

But it is surgery and there is always a risk. I just didn't want to wait longer and then work to have it done. People tell me I'm lucky that the first surgeon didn't kill me-I guess so but doing it well the first time was another option I feel. Bad or death shouldn't have been my choice. Now I'm just glad it's gone on both sides.

I feel like I am a success story. I had both styloids removed externally. I felt so miserable before the surgery and every day after the surgery I felt better. It has been 11 months and I still feel great. I had a lot of symptoms before and I I think all on my list are gone. Good luck. I;m not sure where you are but I drove to Canadaigua, NY to Dr. Bradley Simmons for my surgery. I probably wouldn't remember to come back to the forums but I still get emails when people post. I think the surgery was life saving for me.

@kimmiesue really thank you for your answer. Finally someone with hope!!! :)

I've read really quickly that you had tinnitus, is it gone completely? Couple more question and I will let you live your life without eagle syndrome, please answer me :)

Did you have something like hyperacusis at that time? It's sometimes called the same - tinnitus, but it's hypersensitivity for sounds. I have both. Maybe you had it also? What surgery you had? External or internal?

Than you very much again. I live in Europe but I travel a lot and I've been in NY couple of times.

Is this the guy - ?

kimmiesue said:

I feel like I am a success story. I had both styloids removed externally. I felt so miserable before the surgery and every day after the surgery I felt better. It has been 11 months and I still feel great. I had a lot of symptoms before and I I think all on my list are gone. Good luck. I;m not sure where you are but I drove to Canadaigua, NY to Dr. Bradley Simmons for my surgery. I probably wouldn't remember to come back to the forums but I still get emails when people post. I think the surgery was life saving for me.

I’m recovering from second surgery (external) - left side done two weeks ago. I noticed massive changes after first surgery (also external right side stylo hyoid process excision). That caused problems with my ears, eyes, neck, shoulder, teeth, glands, sinuses, throat, tonsils - had hideous headaches and fibromyalgia, plus trigeminal and ossopharangeal neuralgia. Went to sooo many specialists. Anyway that all went away after surgery! ! I have had the scar tissue treated with sonar and physio . But answer is YES to success and recovery. I live in Johannesburg South Africa. God bless xx

Could the clicking and crunching be your jaw? I know how you feel. I have left over symptoms in my neck and in my jaw, but for the most part I am better. I also have severe tinnitus on the other side and have had it for 12 years, but no other Eagles symptoms on that side, so I live with the tinnitus. Tinnitus and hyperacusis is common and usually not caused by Eagles, but I think it can be a symptom of Eagles, just no gurantees that Eagles causes it in most cases.

Sorry, I cannot give you answers that you want. For the most part, we can only support each other because none of us really knows which symptoms will be cured with surgery if any. Too many nerves and other problems could be causing these symptoms, so if you already had one surgery and some symptoms are gone and it is not too bad, you can go after a second surgery or rule out other stuff first. I am trying to make sure that I don't have something else easier to fix first. Saving another surgery for last, but no one can feel what you feel so I wish you the best.

My Eagles surgery got rid of the worst symptoms, but I did not feel well for over 6-9 months and still have recurrances, but the ear pain seems to be always related to my acid reflux so I work very hard not to eat anything to cause acid reflux, and that is a challenge.

There is a possibility I did this past Monday. I was working out doing a very strenuous aerobic circuit. The second time through I got really light-headed & felt like I couldn't catch my breath. It also took some time to shake the light-headed feeling. I was at a gym & needed to be able to ride my bike home. I did ride home somewhat slowly & shortly after I started riding I got a horrible pain in my right ear, right side of my jaw & throat & in the right upper gums along my tooth line on the roof side mouth (as opposed to the cheek side). So far my ES pain has been pretty low grade so that surprised me. It went away after a few minutes - all but the gum pain which persisted for a couple of days. It was like when you drink something too hot, & it burns the roof of your mouth & surrounding tissues except only on the right side. When I got home, I still felt "off". I took my blood pressure & found it was a fair bit lower than normal & my pulse was high. Would have expected both to be above normal after a workout.

After all that, I checked in on this ES site & read 2 recent posts from people who'd had vegus nerve irritation from ES. I'm now wondering if that's what caused my problems on Mon.