As I try to explain Eagles Syndrome to others, I discuss the styloidectomy procedure and how it is removed. The question then turns to, “if you are removing a ligament, what functions will you lose?” It’s a good question, and I don’t know the answer. But I understand why it is asked. Ligaments support and connect bones, and connect bone structures. If connections and support are removed, what then becomes disconnected and rendered dysfunctional?
Good question. The stylohyoid ligament plays a very small role in swallowing. Most people don’t notice when it’s gone. This is because there are other muscles & ligaments in the area that also serve the same function & they can do the job w/o the stylohyoid ligament.
It most likely prevents the hyoid bone from being pulled too much “down” into the neck when omohyoid muscle is in action. Basically, like a stopper. Omohyoid muscle’s possible role in Eagle’s is also suspicious to me, as the omohyoid muscle can get injured during various athletic activities or car accidents, or as simple as excessive vomiting.
In addition, spasmed omohyoid muscle (together with scalene muscles) may compress/stretch out internal jugular vein.
I did ask the doctor who did my surgery what effect detaching the stylo-hyoid ligament from the styloid end would have, & was told I wouldn’t feel any difference, & I haven’t!
I’ve been wondering the same thing myself. I was also told if you have one side removed and not the other that you will have some type of instability. I still need my left side removed but haven’t found anyone I’m comfortable removing it. So the whole thing seems a mystery to be honest. I never get straight answers from doctors or anyone. I don’t think any of this is studied enough😕
There are some really good doctors on our list in the Doctors Info Section, but it could mean travelling…you’re wise to wait until you see someone you feel confident with though!
One thing I feel strongly about regarding having the remaining side removed is don’t do it if you are asymptomatic. If you’re having pain or other ES symptoms then it’s worth considering, but if you’re without symptoms, leave it alone. We have had members who had a second styloidectomy when symptom free, just because they felt they should. The end result for at least one person was long-term nerve pain on the second side when prior to surgery there had been none. “If it ain’t broke, don’t fix it.”
I see you’re a dancer, & if you’re able to dance again since having your styloidectomy, that’s a good sign that you may not need the second styloid removed (again, unless you’ve got symptoms that are life limiting).
I agree completely. My friends about to be getting surgery on this and she’s already seen the facial paralysis and everything I’ve gone through so I keep trying to help her try to figure out if it’s really causing it or if it’s something else because I don’t want her to go through this if she don’t need to. She may have TMJ as well according to her imaging. Her styloid isn’t long but it’s in a weird spot so I know that can cause issues. I do know that with mine, I’m still symptomatic on the other side. I still even have symptoms on the surgical side. However I just had my tonsils removed wed the 18th just in case the reoccurring tonsil infections was causing it. 21 infections in 2 years could cause a lot I assume so I hope that fixed most of the pain as I didn’t even know it was the tonsils cussing it till recently when they became abscessed… I’m going to give this a few months to heal before deciding on the left side. I doubt the tonsils were causing the vascular issues but before doing facial paralysis or anything else again, I just need to be sure! Thank you for writing this because I feel better about my decision on waiting to see if I’m truly still symptomatic before going on the other side! My face isn’t fully healed and I still have some weakness that may be permanent so I want To wait.
Thank you for the update. It is hard to know what the actual cause of the nerve pain can be, & sometimes we just have to rule out one thing at a time. You started w/ your styloid & next your tonsils. I hope once you’re healed your symptoms all go away, however, I do agree w/ you, that if your ES symptoms persist over the next 6 months, considering another styloidectomy would be worthwhile.
I had bilateral surgeries about 9 months apart. My most symptomatic styloid was left for last because the angle of the first one that was removed was more concerning to my surgeon. After the first one was gone, I did have relief for a month or so from symptoms then they came back, & like yours, on both sides. It took getting my second styloid removed to stop everything. My tongue was half paralyzed after my first surgery. It took about 9 months for it to start working normally again, so I could talk w/o sounding drunk .
In the big picture, I have no regrets for having both surgeries even though I do still have some facial pain & First Bite Syndrome. It’s been 7 years since my first surgery, & my FBS is still gradually getting less & less. AMAZING!
I’m so glad you got both out. I bet it feels like a relief. Just knowing that they’re gone and you don’t have to worry about it anymore. Did you get the surgery with someone on the list? And I’m so sorry you suffered nerve damage. Especially the tongue!!! I’m glad it’s getting better though. I’m glad your first bites getting better as well. The weirdest thing is, I had first bite syndrome for the last 10 years. It was pretty mild though and it was only with sweet and sour stuff. After surgery it was intensified and literally would even happen with water and was 1000 times stronger than my normal. I thought I was stuck with it but it did actually get better within two months. Now I just have my normal again with sweet and sour. Really sucks that you still have it and hopefully it gets better.
I mentioned feeling better after the first surgery then getting worse again? The same thing happened to me. I actually felt better for about two months. It was incredible. But then when my symptoms started coming back, I thought that maybe it wasn’t Eagles causing everything!!! So that’s why I opted for the tonsils instead of the left side. But I do have jugular vein compression on both sides so I think that I really need the left side done no matter what. Can symptoms getting better and then coming back be still Eagles? I feel like for some people both sides do really need to be removed and then for others, one side is just fine. Even my vascular symptoms on the right side disappeared for a few months. But they’re back now. Also my external jugular vein is now swollen and three times the size on the surgical side when it wasn’t before. My doctor said maybe it’s because the blood flows actually working now but it was my internal jugular vein that was compressed? So that doesn’t make any sense. Although none of it makes sense to me lol I’m probably gonna just get the left side done in a few months once I find someone I trust to do it. I don’t trust the surgeon that did it only because I don’t even know if he actually did it lol it was a really crappy situation. I waited nine months for him to do it and then when I got there they told me he trains doctors and that they would be doing it. So I still to this day don’t know who did it because the surgical report was vague. I recently had my tonsils done and he was the one that was supposed to do it and they told me he was doing it. Six hours after I was waiting, they told me that it’s going to be a fellow in training doing it or I can leave so I’m just a little worried. The person that did my first surgery did a good job but I don’t even know who did that I don’t know if it was him or if it was one of his people. Whoever did it, I would like them to do it again just because I didn’t even have any throat damage or anything. I did have facial paralysis because of the location of entry and they also said my styloid was hooked up like a fishhook around the facial nerves. I wanted to go to Dr.Nuss after getting my referral they said he’s not doing eagles anymore. So I’m at a loss on who else to go to in Texas. I’m really glad that you no longer have your styloids. I hope that you continue to improve and that any nerve damage gets fully better. Thank you for telling me your story:smiling_face_with_three_hearts:
First off, sorry for what you are going through with ES and other symptoms.
I think nobody knows for sure what ANY doctor does when they take a patient into the surgery room …nobody from outside the facility to verify! I can think of several scenarios what could happen in the operating room! They (who knows who ?!) can cut, poke around, stitch and send the patient out … and report whatever they want and collect their huge fees ! And having had signed tons of documents before they operate, back home patient is on his/her own …! Good luck to all who are suffering with health issues and dealing with medical personnel anywhere in this world especially now! Happy Holidays to all.
First off, Dr. Nuss is doing ES surgeries again. We have a member who had him do his ES surgery about a month ago. Please contact his office. He might even do a revision surgery for you if you need it on the side that was already done. He has done revision surgery for other members when not enough styloid was removed in the first surgery. He does cut the styloid back to the skull base as he goes in behind the ear which makes a lot of sense.
Thank you for sharing your story. WOW! I can imagine how disheartening it would be to have surgery & learning that it wasn’t done by the doctor you expected to do it. Your tonsillectomy story is really awful, too! That doesn’t even seem professional/ethical to wait so long then be told to just accept whoever was going to do your surgery w/o knowing who it would be!!
Dr. Samji did both of mine & I did find his name here. I was originally scheduled for surgery w/ the doctor who diagnosed me but got a second opinion from Dr. Samji. His experience w/ ES was much greater & his surgical approach made more sense than the diagnosing doctor’s so I switched doctors. I’m forever grateful for this forum, for the support I got when I needed it & for the doctors list.
I would still let your throat heal from the tonsillectomy & see how things are then. ES symptoms can come back if the styloid isn’t cut back short enough & sometimes cross-over symptoms (i.e. pain on the opposite side) can occur when there is still an elongated styloid remaining on the other side so you get symptoms on both sides. Healing from ES surgery can also be a forward/backward/forward process as nerves seem to cause pain when healing then they take a rest & we feel good for a bit. Then there is more pain as further healing occurs then we feel better again for awhile. This can go off & on for many months & even up to a year after surgery as nerves are slow to heal.
Thank you for your well wishes for my FBS. I’m sorry you have had it so long yourself. I find that keeping myself very hydrated (80+ oz fluids/day) really minimizes the symptoms. I guess keeping my saliva more dilute is helpful. When it was at its worst, I also got it just drinking water so I sympathize that you had that problem, too.
Please do try calling Dr. Nuss’s ofc to see about getting a consult. I think it will be worthwhile.
He is??? Dr.Nuss’s Office called me after they got my referral and said he’s not doing it anymore. So they scheduled me with someone else who I’ve never even heard of. I think his name is Stephen Hernandez. It just really sucks because it took my doctor a year to send that referral and he told me he doesn’t send out of state and that he won’t even send anymore. So that was like my only shot lol I wonder if someone else can call and see if he is? It’s just crazy that they just switched me to someone else. I feel like Dr.Nuss would really be good for me and he’s only 6.5 hours away! I could drive there. All of the other options are just too far away. I kind of gave up when they told me he wasn’t doing them anymore lol I think that was the point where I was just thinking well I’m just gonna remove the tonsils and hope for the best because I am exhausted. I have so many other health problems and I can’t keep fighting this fight that seems to have no end. Thank you for telling me about that. Maybe I’ll have my friend call and just see what they say to her? I thought maybe he just didn’t like my insurance, I don’t know lol
Wow I didn’t know that about healing from ES. That makes sense though! that is very good to know because I was good then it came back and then it was doing a little better. Now I have this weird numbness in surgical ear that was gone lmao I do know that my left side symptoms got worse about a month before the right side was removed. I had the left re checked and my left jugular is so much worse. Personally I’d like both of them removed just because I just want this over with. I have so many other health issues and just miss life lol I’m sure everyone knows the feeling. I have 0.5cm left so I really hope that’s enough. My surgeon told me he would remove the whole thing and then didn’t. So I don’t even know who did the surgery but it did seem to help my jugular vein by 75%. It does suck that it wasn’t fully removed because I want it all of it or none lol but that’s life I guess!
Thank you so much for your help. I really appreciate it. And I’m really glad that both of yours are removed and that you were able to go to Samji!!! He seems to be very good!
So sorry that you’re having all these symptoms…I hope that you can find a doctor to help you, with whatever surgery you feel best, once you heal. Sending you a hug
The inside scoop on Dr. Nuss is (whether it’s correct or not), during the period when he stopped doing ES surgeries, he had a critically ill family member (maybe one of his parents?) so he cut back his office/surgical hours during that time to help w/ that person’s care. It seems that crisis has passed so he is back in full swing. It would still be worthwhile contacting his office to ask about ES surgery.
If your medical insurance is a PPO, you should not have to get a referral to a specialist, even out of state, if that specialist takes your insurance. You should double check w/ your insurance company & not take my word for it. Generally, that’s how PPOs work though. Making sure Dr. Nuss still takes your insurance would also be a good idea.
Happy I could help you. I hope you feel encouraged!
Oh wow. I didn’t know that. Thank you for telling me. I bet you the office staff just isn’t up-to-date. I’m definitely going to check with them tomorrow. I was really confused when they said he’s not taking Eagles patience because the only reason I even went there was because someone just had a successful surgery with him recently so it was really upsetting. I thought maybe he gave up after that lol but hopefully I can get past his staff to schedule an appointment.
Unfortunately I have an HMO. But luckily the referral was sent. They changed it to the other doctor but the other referral should still be good. And if not I can try to change it back. Thank you for telling me this because I’m definitely going to try again:heart: