I’m freshly minted ES from 3D CT. I’ve had chronic pain for 11 years that most doctors have chalked up as anxiety/stress. The ENT just diagnosed me but has little confidence in surgery, and with the process elongating through my right tonsil I was shocked when he said ibuprofen for a few months might help and if I want to do surgery he hesitantly said he would do it. I’m not convinced. My symptoms are headache and not extreme vertigo but more of an unsure footedness and a falling to the right sensation. I have a few questions:
is it better to do the surgery intraorally or extra? Pros and Cons.
My hypochondria is on an all time high…do I need to worry about sudden death via carotid because I do all day and all night now.
would doing intraoral surgery even help the carotid problem?
I’m interested in the endoscope surgery…what is your experience with this?
what is the difference between elongated process and calcified ligament? Isn’t it all the same line of calcification? Then why is it pushing through my tonsil and not going to my hyoid bone?
will surgery leave loss of ligament use that causes speech changes?
has anyone ever died during this surgery?
how many of you rubbed this in the doctors faces who initially brushed it off…once you received a definitive diagnosis.
is it possible for an oral surgeon do to it ?
P.S. I have no idea if I have compression on a vein or artery…who do I ask to confirm this?
11)Lastly…can the process come back after surgery?
I’m located in Southern Utah
You asked good questions. I will answer as many as I can & refer you to the magnifying glass icon at the top right of this page to search for the rest. Others will likely give their two cents as well.
I’m in shock that your ENT would think ibuprofen for any length of time would help you w/ a styloid that has elongated THROUGH your tonsil. That’s totally INSANE and clearly shows a lack of understanding of ES.
Q1: The general consensus is that external surgery is better than intraoral for 2 reasons - there’s complete access of the styloid process & stylohyoid ligament from skull base to hyoid bone and the nerves can be electronically monitored & vascular tissues can be visualized to help keep damage to a minimum. With intraoral surgery, the surgeon is basically cutting blind & only a small portion of the styloid & or calcified ligament can be removed. That said, there have been many people who’ve had successful intraoral surgeries & there have been some who’ve had to have the surgery redone a few years later because not enough styloid was removed so they became symptomatic again.
Q2: You don’t need to worry about sudden death via the carotid. There is only one recorded case (that I know of) of someone dying from ES. There have been several cases where people had strokes because of arterial impingement by the styloid but those didn’t result in death. If you aren’t having vascular symptoms (i.e. migraine headaches, vertigo, blood pressure issues, fainting, etc,) then you may not have vascular impingement & thus there’s no need to worry.
Q3: Intraoral surgery could help the carotid problem if the portion of the styloid that’s pressing on the carotid was able to be resected.
Q4: I only recall one person posting about the endoscopic surgery & don’t recall the details. Head to the magnifying glass icon for more information on that.
Q5: The stylohyoid ligament runs from the tip of the styloid process to the lesser cornu (horn) of the hyoid bone thus is the link between styloid & hyoid. It plays a minor role in swallowing thus it isn’t really missed when it’s gone. In some cases the styloid process elongates or the s-h ligament calcifies at the styloid end creating the appearance of an elongated styloid. In other cases the s-h ligament calcifies at the hyoid end but not completely so there is a gap of non-calcified ligament between the calcified portion at the hyoid end & the tip of the styloid. Some people get calcification at both ends so the styloid is elongated & the ligament is significantly calcified, too. Occasionally the entire styloid to hyoid section becomes one solid calcified mass.
Your styloid is elongated & that’s why you feel it pushing through your tonsil. If the calcification was the ligament at the hyoid end, you would have other symptoms (see posts from SewMomma who had/has that problem).
Q6: Speech changes can occur as a result of surgery because there are a number of cranial nerves that run through the area where the styloid process resides. In the process of resection, these nerves must be moved out of the way which irritates them & can cause things like temporary tongue paralysis, lip droop, facial pain, etc. In almost every case, these problems resolve over the course of the year after surgery.
Q7: I do no know of anyone dying during this surgery & there are now several thousand people who’ve had it done either intraorally or externally. That said, I don’t know where you’d go to find the answer to this question.
Q8: I don’t know how many people have gone back to doctors who initially brushed them off or told them they needed psychiatric help to deride them, but I’m sure some have.
Q9: I contacted an oral surgeon when I was trying to decide who to have do my surgeries and was told he doesn’t take care of ES. I don’t know if that’s universally true, but ES surgery is a much more major surgery than an oral surgeon typically does. You want to see a skull-based surgeon. There are a number of ENTs who are also skull-based surgeons. Many people on this forum have chosen to travel out of state to see one of the more experienced surgeons listed on the US ES Doctors’ List (link below). At this time the most 3 most experienced are Dr. Samji in San Jose, CA; Dr. Cognetti in Philadelphia, PA; & Dr. Milligan in Phoenix, AZ.
In answer to your P.S. you will need to get a CT scan with contrast to see your vascular tissues. Since an elongated styloid doesn’t generally compress a vascular tissue (carotid artery or jugular vein) all the time, it’s important that the person’s head be in the position that makes them symptomatic for vascular compression when the scan is done. Optionally, if you aren’t symptomatic, you could see if the scan could be taken w/ your head in a variety of positions to look for compression.
Q:11 Yes, the styloid can grow back after surgery. This is more likely to happen when it is only shortened not removed. When the styloid process is removed to the skull base & the s-h ligament is fully removed to prevent the possibility of calcification or further calcification there is almost no likelihood of regrowth.
I hope these answers are a good start in helping to ease your mind.
Thanks for calming me down. My symptoms have been radiating pain to the right ear for years(11). A constant tightness in my head like wearing a swim cap. 1.5 years ago a constant clearing of mucus on the right side. Also for 1.5 years- a mild vertigo where I lean/fall to the right all the time since August 2017…around that time I had a cold and my taste changed for 2 days to extreme saltiness when I ate salt, like shoveling in spoonfuls of salt. My blood pressure is 140/92 and I’m 32 years old. My initial symptoms started February 8, 2008 as is written in my journal. That night was an event. One more question…how fast do these processes “grow”. Could it really have been slowly burrowing for 10+ years?
It’s unclear how fast the styloids grow or even what causes them to grow. I imagine it’s gradual but the process seems to be continuous until they’re removed so yes, yours could have been growing for 10+ years. This is only my opinion though & I’m not a doctor. Same goes for the s-h ligaments. Dr. Eagle thought ES was caused by tonsillectomy but that has since been proven wrong as many people who still have their tonsils have ES. There is still much speculation as to the cause(s) of ES.
Interesting about your vertigo. I had a similar encounter w/ vertigo before ES diagnosis, except mine made me walk diagonally to the left. An ENT diagnosed me w/ positional vertigo. I only had it 2-3 times then it stopped. The tightness in/around your head could be nerve impingement but could also be vascular as would be the vertigo. Do you notice either of these get worse when your head is in a particular position?
The mucus situation is also a somewhat common side effect of ES though I’m not sure what initiates that. There have also been reports of change in taste or strange taste in mouth & also vocal changes.
Your high blood pressure could be a symptom of vascular ES. Are you reasonably fit or do you lead a more sedentary lifestyle? I ask this only because my son is 27 & has high blood pressure, but he’s a computer geek & does a lot of sitting. I’m trying to get him to understand the need for basic exercise.
Good for you for keeping a journal. I wish I had as I’ve forgotten some of the details of my symptoms now. It’s been almost 5 years since my first ES surgery.
Very comprehensive answers! Can’t really add anything except to say that there’s lots of info all about ES, including common symptoms, so you could look at that & see if there are any you have- members often find ones we’ve had for years & don’t realise that it’s possibly due to ES. And also it helps to know that others have wacky ES symptoms so you’re not alone!
Strokes etc. from ES are very, very rare, there is a section in the Newbies Guide with info. I hope that with the answers you’ve had & info on here it does reassure you- it can be a scary diagnosis, & the idea of surgery can be scary too (which is why many doctors don’t want to do it!), but the majority of us who have surgery come out of it unscathed & feeling loads better after we’ve recovered!
Best wishes!
Hi eaglet86
I’ve only read one article on the endoscopic surgery for eagles and I don’t think anybody on here has had it that way so I’m thinking it’s a fairly new surgery but I’d love to know more about it. I will be having surgery in the future and my surgeon is an oral maxofacial (spellcheck?) surgeon even though some of the top Ents wouldn’t touch me. Your on the right road now.
My input on some of the things that concern you:
I also googled the death stuff - I found a tiny crumb then started to go down a rabbit hole and got in trouble by my husband because I just knew this was going to kill me.
He gave me a big hug and said cut that out. What I did do is wear compression socks for a week after surgery which I was told multiple times was totally uneccessary. But I was paranoid about blood clots. Pluse they are SO fashionable. You should have seen me on day 2 post-op in my socks, robe and bandage over my neck. Christmas card photo for sure. Remove “death” from your list of worries whether it’s before, during or after the surgery.
I’m curious why your styloid seems to be like a “branch” off the “trunk” of your ligament. How does it shoot off like that to poke people? You’re not the only one that has presentation like that.
I had a tiny bit of nerve irritation post-op that makes my tongue kind of twisty. I need to post an update on my “thankful for you all” post. It’s getting a tiny, tiny bit better day by day. My husband also doesn’t like it when I downplay how much better it’s getting. He thinks it looks super.
You are a teacher - wow! You have to stand on your feet all day and talk? Any frog disecting coming up? That sounds like alot to have to deal with this AND 30 teenagers at once.
The ENT that first said “ignore it, surgery won’t help but I’ll do it if you want” to me signed off on me to his colleague. Hard pass on that guy. Every time I’ve been there since then I wondered if I was going to see him in an elevator, cafeteria, etc. God has saved me from that. It’s all too raw for me right now so I would be way too emotional. I will do another survey after the second side and I may use that opportunity to share my story with the hospital administration. But the guy he passed me on too said “I take interest in Eagle syndrome and I think this will really help you.” Music to my ears.
Oh and I’m a worrier so I went on an anti-depressant after I saw that first ENT and it helped me calm down when I thought no one was going to be able to help me. I’m going to stay on it til I get past the second side.
I’m gonna see my local ENT one more time tomorrow to mostly get better video/pictures of my 3D CT scan so I can take it to another doctor up in Draper Utah. The Doctor in Draper is a base of skull/neck cancer expert who has some experience with Eagle Syndrome and does it Externally.He worked at the University of Utah Medical Team. His name is Pramod K Sharma. My consult with him is March 4th. What doctor did you see? I’m 7 hours from Dr. Milligan in Phoenix…is he worth a consult?
The doc in Draper sounds promising! I had a 90 minute commute to Atlanta so…I’m spoiled in that I had my feet up in my recliner at 2:00 p.m. day of surgery.
Q8: I did call my ENT who had seen me 5 times and told me nothing was wrong. Even when I found the bone in the back of my throat and asked him to feel it and tell me it wasn’t a bone that seemed attached, he told me it wasn’t a bone and wasn’t attached to anything. Wanted to do a tonsillectomy and call it good. I called him for a referral to a surgeon since I had been diagnosed elsewhere with ES. To his credit, he actually bent over backwards to get me a referral, then called me a couple months later to see how things were progressing and to see if I had had surgery yet. He just didn’t know anything about ES and didn’t even know the symptoms could be serious. I recall he once sort of laughed it off as not being any big deal. Since then, I always make sure to let younger doctors/residents feel the styloid though the tonsil and get a good look at how it bulges slightly inward. Hopefully they will recognize it more easily in other patients. I show them the 3D images in my phone and ALL of the doctors have been interested in those. It’s really so helpful to take your images with you. Best of luck to you. You’ll find someone that’s not a “pansy”
I agree with redbird - you will be educating people. Said ENT up above even refused to palpate my click. He said he didn’t need to feel it. I asked three times, he sighed and said “yeah mine does that too”. Bullcrap. Everyone’s hyoid passes by things when manipulated with your hand. This was on a clicking/snagging upon every SINGLE swallow including saliva in bed at night. Some doctors are ignorant and pridefully hide behind arrogance about things they don’t know. I like curious doctors. They are rare.
Q5. I’d never thought of this. It doesn’t seem to make sense if it’s the calcification of the ligament that’s already there. Could it be how it builds up on top of the previous section, kind of like a stalagmite and the tissue around it affects its development and direction??
Q8. made me LOL. Without investigating the ES poking into tonsils, my GP told me it was all in my head and actually said that if she was wrong to come back and ‘rub it in her face’. As much as my imagination of what that moment would be is great, I think the reality would be awkward and isn’t true to my values.
Interesting perspective on question 5 Mafre. I think it’s one of those things that will be hard to know the answer to for sure except the last part of your question. It does make sense that pressure from the surrounding tissue could affect the development & direction of the calcification be it ligament or styloid. When ligaments or bones are injured or put under pressure, the body tries to correct the problem by reinforcing the area w/ more calcium. If this happens in the wrong places (i.e. styloid, spine, joint spaces, etc) we end up w/ bone spurs, arthritis or other painful issues (ES…). Tendons & ligaments can also calcify in response to injury as the body tries to protect them from future injury, but the end result is they become rigid instead of flexible which results in pain & other problems as we have seen repeatedly on here.
You can look for compression several ways in your CT images. I also converted my 2D scans to 3D, but both are helpful. My images were taken with my head in the neutral position, so things would look different if I was looking downward. If you have compression at the top near the skull base you should see a pancaked vein and that actually would not change much due to head positioning. Mine is not as drastic as some I have seen on this site, but you get the idea.
Seeing your post, I’ve had episodes of having a salty taste in my mouth. I never considered it could have been related to the ES and doctors always brushed it off saying it could be from a sinus drip though I didn’t feel like I had a drip at the time. As for the growing process, I’m not sure anyone understands how or why they grow, but they do and some of us have had them causing symptoms for well over 10 years and have become worse over time. The swim cap feeling is probably similar to the nerve tingling I had in my face and head before my surgery.
Good luck to you.
I’ve read several posts where people had some sort of recurring taste in their mouth. Because my body has to be different , I had a recurrent smell in my nose which I recall was metallic. It stopped after I had my ES surgeries.
I have surgery set for April 9th by Doctor Pramod Sharma in Salt Lake City Utah. He said he has done 20 extra-oral Eagle Syndrome surgeries over 23 years. He is also a base of skull, head and neck cancer specialist.
He said he felt very comfortable doing the surgery, that I need it, and that over the 23 years of going into the neck he has never damaged a facial nerve. Sounds promising. That’s my update.
By the way your surgeon sounds terrific! And I love your relaxed posture in the photo! Keep that up for the next 30 or so days and put your trust in the hands of a caring surgeon that wants you to feel better! What a gift! Time to let go of control, worries and fears!!!
eaglet86 - Nice styloid! No wonder you’re having nasty symptoms. I second & third all SewMomma said! I’m so excited for this good news! Remember it can take a couple of months before you feel pretty normal again, & the first & second weeks post op are the toughest as far as pain & inflammation go. Keep in mind we’re here for you so please feel free to post details of how your recovery is going so we can encourage you.
We will probably wait till after your surgery to add Dr. Sharma to the doctors’ list - after you give input as to how you feel the surgery went.
I’ll put your surgery on my calendar so I can be praying for you specifically that day.
because I just knew this was going to kill me.
, I had a recurrent smell in my nose which I recall was metallic. It stopped after I had my ES surgeries.
