This is a good observation & I agree with you. My glossopharyngeal nerve was wrapped around my R styloid & had to be gently unwrapped so the styloid could be shortened. When I awoke from surgery, the right half of my tongue was paralyzed. I could feel it but the muscular part didn’t work. When I stuck my tongue out of my mouth it made a sharp turn to the right. Very odd to see. It mostly recovered but took about 9 months. I still have a little trouble w/ my tongue 11 years later, but it’s much better than it was & is a small price to pay to be rid of my ES symptoms.
Hi Rex, I just got my 3d reconstruction, my left styloid process is 54 mm and right side is 45 mm, so it would be a confirmed Eagle Syndrome diagnosis. The pictures are in the attachment. I will be seeing the doctors team tomorrow for a treatment plan, I am currently doing work travel back and fourth around Japan and China, my friend recommended me to an orthopedic hospital in Shanghai where he was able to refer me to some doctors for imagings/appointments. I think your symptoms are worse compared to mine as far as pain, pain all across the face.. eyes, dizziness, and headache, which to be honest, I’ve never experienced significantly or consistently except for some the basic lump in the throat feeling, worse on left side radiating to the ear, also I feel nauseous pretty much all the time and I constantly had to retch, however I have never felt pain or discomfort with my stomach and have a pretty normal digestive system, aside from my unique deviation phenomenons, but luckily I don’t have that much pain compared to the many people on here, people have unique pain in different areas, many sounds absolutely unbelievable and horrid that it has gone undiagnosed and dismissed. You sound like you have a decent amount of knowledge with this, I’m assuming you have done your ct 3d reconstruction? Did that shows something incriminating or important? I believe normal tongues shouldn’t deviate to the left/right when relaxed or protruded and there has to be something interfering with the nerves just from my long term experience, it can be protruded and maybe go upwards/shape changes from wide to skinny once every now and then but I think that it should never consistently deviate to one side and no way it’s a developed habit if it’s just much more comfortable deviating to the left/right side with less pain in the throat/neck/head. Maybe what you’ve experience is like mine just less severe and is indicative of a somewhat of a hypoglossal/glossopharyngeal nerve problem?
Wow, they look really long! It’s not clear if the hyoid processes are very long from the images which you were a bit concerned about too… What are your next steps @Picker99 , we don’t know of any surgeons with experience in your state…
Hi Isaiah, I have just gotten my ct 3d reconstruction in my reply to Rex, I don’t know why it looks weird (not showing the entire bone structure). Maybe it’s because ive told the doctor to check specifically the styloid process/calcification so the rest is ignored (lol can’t even see the upper lower jaw, teeth.. etc, also weird bony thing around c4 that only shows up on one side, I’ve asked the doctor what is that he said don’t worry about that probably an artifact (thats ok I can’t worry about too many things all at once), also the hyoid bone is not showing up, but through doctor’s palpation during the appointment, he believes there’s nothing wrong with my hyoid bone structurally, these observations made by the doc are acceptable to me for now because I can’t solve all these issues in a rush i have to go step by step which takes time (maybe I have hyoid bone syndrome or hyoid bone related issue developed along with styloid elongation, or maybe I don’t at all!) But the point is now i will focus on how do I deal with the main issue-styloid process. You’ve mentioned that your nerve has to be unwrapped from the styloid process before the surgery? How did you even find out that it was wrapped in the first place?? That sounds like it requires some really technical imagings…If I were to do a styloidectomy should I first understand the proximity of the styloid to its nearby structures since I don’t know if some of my nerves are wrapped around the styloids, because the symptoms will continue even after the partial removal of the styloids as the nerves aren’t unwrapped (or am I overthinking)? Because My doctor did mention transoral partial resection, and he said it’s not always easy to not do any damage the ICA/jugular veins and other nerves if I want a rather significant length of the styloid removed transorally, in my current understanding, during surgery, as it gets closer to the start (top) of the styloid, the greater the risk of damaging the nearby delicate structure likes nerves, in my opinion removing like a tiny bit like 1cm may not even help the symptoms that much? Or do you think my styloids are long enough and low enough to be resected a good amount without reaching the posterior (ICA…etc) transorally? If it’s really necessary and more effective, I am open to the cervical option as well! I will discuss the specific plan with him tomorrow. I am a little overwhelmed..and this is a significant amount of questions, please take your sweet time answering this, and thanks a bunch in advance🙏
Anyone else is welcomed to comment and give out any advices:folded_hands:
Hi Jules, I am meeting with a doctor tomorrow, and will update:grinning_face:, he has suggested the transoral approach, I’m now doing my research about it.
The nerves won’t show on scans so it’s often only during the surgery that the doctor will discover exactly what’s going on with them- we’ve had other members who have had nerves tangled with the styloid or other soft tissues.
Personally I would see what your doctor says, and if necessary get a second opinion about the surgery; with intra-oral doctors can’t remove as much of the styloid process, and there’s not as much visibility so it’s harder to see the nerves & blood vessels. Only a partial resection may well not alleviate your symptoms as you say. External surgery (transcervical) makes it easier for much more of the styloid to be removed, and also means it’s easier to see the blood vessels. It’s also important the the doctor monitors nerves, the Facial nerve particularly as it’s very delicate & easily damaged.
We have a list of questions which we suggest members ask their doctors:
How many ES surgeries have they done and what was the success rate?
Whether they’re going to operate externally, or intraoral- through the mouth. Whilst some members have had successful surgeries with intraoral, external is better for seeing all the structures, to be able to remove more of the styloids, & also there’s less chance of infection.
You need to ask how much of the styloid he’ll remove- as much as possible is best- & anything left needs to be smoothed off. The piece needs to be removed too- some doctors have snapped it off & left it in! If the styloid is only shortened a bit it can still cause symptoms.
If your stylohyoid ligaments are calcified, then any calcified section needs to be removed too.
There’s usually swelling after surgery; you could ask if a drain’s put in to reduce swelling, or if steroids are prescribed. It’s not essential, but can help with recovery a bit.
Will it be a day case surgery or will you need to stay in?
Obviously ask the risks- we know from experience on here that temporary damage to the facial nerve is quite common, and also the hypoglossal nerve and the accessory nerve. These usually recovery very quickly but in some cases members have needed physiotherapy. There is also the risk of catching a blood vessel or having a stroke, but these are very rare.
Ask if the surgeon monitors the nerves- this should be done to see if there’s stress on the nerves to avoid damage as mentioned above.
What painkillers will be prescribed afterwards.
Ask about recovery- most doctors either down play it or are genuinely unaware of how long the recovery can take!
Hope this helps, and let us know how you get on talking to your doctor!
Thank you so much Jules, I’ve carefully reviewed these points you’ve made, I’m now seriously considering if i should pursue the intraoral surgery, but I am beyond happy that I am diagnosed, that’s a huge step. lol, that sounds so weird to people outside of the Eagle Syndrome community.
Those are some nice styloids. I’m just a novice at the ES thing. @Isaiah_40_31 and @Jules are the experienced ones.
As you mentioned the hyoid is not visible. They have trimmed the image to show the styloids but trimmed away hyoid and possibly fragments of a calcified stylohyoid ligament. You should get a 2-3 copies of your scan for your own records, for possible referrals and maybe to look at it in radiant viewer if your techy. What type of Dr’s are you working with? ENT? It concerns me that he dismissed the bone fragment question which is probably part of the hyoid. He should have told you its part of the hyoid, in my opinion. I’m sure(hoping) they looked at the full scan and did not see anything alarming. Simple unpainful palpation does not mean there is nothing going on. You need a complete picture of everything in order to treatment plan what needs to be accomplished and in what order. Ask to see the 3D scan on his computer. Ask if there are any calcified stylohyoid ligament fragments visible. Also ask how the hyoid looks and if the horns look normal or elongated.
As Jules has already stated concerning the intraoral approach.
I personally do not like the intraoral approach because it places the surgeon at a disadvantage. He has to work through a dark sixish inch tunnel before he even starts to work. Then he has limited room to maneuver instruments to try and get to where he needs to go.(without hitting nerves/vessels) This leads them to only removing a portion of what needs to be removed. In my opinion most surgeons that use the intraoral approach are not comfortable with the transcervical approach due to all the vessels and nerves that need to be negotiated transorally. Which is ok. They are ENT’s that typically do a lot surgery intraorally and are trained and comfortable with that area. Also they prop your mouth open as far as it can go for at least one hour. This strains the opposite side/ligament and can/will cause inflammation, pain and more symptoms on the good side. I just prefer the other approach.
In my opinion you should take your time, do your research on ES and Dr’s. Look for a Dr that has hundreds of styloidectomies (ES) surgeries under their belt. The forum has a list. Get a few consults. ES normally starts out with mild symptoms and progresses and gets worse over the time. You do not want to have to come back and retreat it if at all possible.
Interesting that you are the world traveler. You mentioned a hospital/doctor in Shanghai. Do you have information on them? You don’t have to answer my questions. I’m just interested. Do you have dual citizenship? What type of work are you in?
I see Montana and I think wilderness, Gods country. I place I would love to be.
Thanks Rex, I’m in the food nutrition/science industry, i am just starting out as an intern, it has always been my passion to learn about nutrition and the human bodies reaction to it. I don’t think this doctor that I’ve seen is a expert with styloid process, I can give you his information, but currently I haven’t ask these important questions like how many styloid surgeries have you done or how many ES patients have you seen? I can give you the info of the doctor if you text me privately, there are many ENTs that you can consult with online (not all of their English is great, maybe you can translate). Typically to consult here in China there are many virtual sessions upon in person, this way you can be anywhere in the world and ask the doctors, they use Alipay/wechat pay as an online payment, other card payments are hardly accepted. But you can start using the online consulting features if you were to set up one of the payment option/created an account for it. I’ll be able to help you with the procedures for this. ES is also a rare syndrome here, so that is also why I am considering delaying my surgery. Whether if it’s intraoral or cervical, it will take a decent amount of studying.
@Picker99 - I don’t know if this is helpful but we’ve had a couple of members who lived in China & who spent their hard earned savings to come to the US for ES surgery because they didn’t feel comfortable w/ the level of experience w/ the doctors in their own country. Since you live in the US & your symptoms don’t sound debilitating, it would be worthwhile waiting till you come back here to have your surgery(ies) since there are a number of very experienced ES surgeons here.
@Jules answered the question about my nerve situation which was discovered during surgery & not before. There are often surprises for surgeons who do ES surgeries especially the transcervical approach since they can see so much more than those who only do transoral surgeries. As Jules also noted, it’s important for a surgeon to have nerve monitoring in place during surgery to help prevent damage to nerves. That doesn’t mean nerves won’t get irritated & be more reactive/symptomatic for some weeks post op, but that is different than being damaged. Obviously a situation like mine would not be visible via the transoral approach so there’s a greater risk of permanent damage to a nerve via that approach. Styloids are also found to be longer than expected during surgery which is to say, the scan images aren’t a perfect representation of what the situation is in the neck.
Your images are excellent (except for the missing hyoid bone), & your styloids are pretty spectacular. Thank you for posting the images. I agree w/ that you shouldn’t give your hyoid a second thought at this point. Focus on your styloids as they’re most likely the cause of your symptoms.
I find it a bit scary that your doctor mentioned “it’s not always easy to not do any damage to the ICA/IJVs & other nerves” if you want your styloid shortened significantly. That is because he’s using the intraoral approach & can’t see the vascular structures & nerves among which he’s operating. Removing as much of the styloid as is safely possible will give you the best, long-term results. In many cases the styloids can be shortened to as little as 1 cm safely. I think you should discuss the transcervical approach w/ the surgeon you’re seeing tomorrow, however, if he hasn’t done many ES surgeries with either the transoral or transcervical approach, I’d sure wait to have surgery w/ someone more experienced.
Your nausea is likely due to your styloid irritating your vagus nerve. It will likely go away once your styloids are shortened & your vagus nerve heals.
, he has suggested the transoral approach, I’m now doing my research about it.