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Eagle Syndrome - Online Support Group

ES at UT Southwestern


#1

My story is pretty much similar to many others here.

TL;DR
Diagnosed with 4.6cm SP on left side. ENT at UT Southwestern ordered CT with contrast and diagnosed.

I see several references to UT Southwestern in other posts, especially Dr. Theresa Chan-Leveno, but there are no comments on the forum physician list that indicate anyone has had a procedure there. Obviously, I am looking for and awesome outcome with minimal scarring, reasonable recovery time, etc…

Thanks for your thoughts.


#2

Hi Thad,

Ideally, you want to find a surgeon who will do your surgery externally as there is better access to the styloids & better visibility of the nerves & vascular tissues via that route. As far as scarring goes, most surgeons who use the external route cut into a natural neck crease so that as the incision heals, the scar blends into the neck crease & is virtually invisible.

I recall that a member on this forum had surgery done by Dr. Chan-Leveno but we never heard the outcome. The post was some time ago so the surgery results should be evident by now.

Here is a link to the specific post & following thead:

Hope this helps!


#3

Thanks much! Logically, I agree that the consensus seems to tilt toward the external approach. Surgical videos on youtube sure make the internal approach look straightforward though… I have to assume that most ES surgeries are somewhat uneventful, since so many never seem to post after their procedure. I guess they just go on with life. For those that have been familiar with the condition for a longer time: Is the consensus that surgery is inevitable and generally successful, in the hands of a skilled surgeon?

One other question that comes to mind. The styloid process is actually the anchor point for three meaningful ligaments/muscles that relate to tongue positioning. Are these attachments preserved when they remove the elongated portion? If not, it seems that the hyoid bone would be pulled to the opposing side.

Ok, one more question. After surgery/recovery is neck strength and mobility similar to pre-surgical? I am very active in swimming and cycling. I hope to be similarly active afterward.


#4

Hi Thad,
I envy you the cycling… I used to do lots, but then had problems with vascular ES so couldn’t exercise. I have a disc problem in my neck too so haven’t gone back to it, but once everything’s healed post-op, there’s definitely no mobility problems and the muscles are just as strong.
Lots of people ask about the attachments to the SP- I forgot to ask my surgeon what exactly happens to them, but I’ve never found any change with swallowing or problems with hyoid etc., and as far as I know no-one else has long term either when surgery is done properly.
Not everyone opts for surgery- some have managed with occasional steroid injections or pain relief, but on the whole most people do opt for it (although some members have disappeared from the forum so we don’t always know!). It is certainly the only ‘cure’- any calcification aint gonna go away! In the hands of an experienced surgeon, yes, it is very successful. There have been occasional members who have had some nerve damage (seems to be either with facial muscles or shoulder/ arm muscles), as obviously the surgery’s not without risks… Unfortunately not everyone posts after surgery, and at times it seems skewed towards those who are still having problems posting after their op as they need the support (that put me off having surgery for a while!), but certainly in the last couple of years there’s definitely a lot more successful surgeries. There are figures for ‘success rates’ in the Newbies Guide, and info about what to look for with a surgeon etc.
Also the doctors list has been compiled by a few different members over several years, but no-one would be on the list without at least one successful surgery. That said, we don’t recommend any doctors as such, it’s just a guide for members to know where to look, and you need to get a feel for the doctor yourself, how confident you feel in their hands etc. External surgery is usually better for removing more of the styloid, so giving the better chance of a good result.
Good luck!


#5

When I was diagnosed w/ ES, I did as you have done & watched ES surgical videos on YouTube. As you have observed, there are only videos of the internal approach which, as you noted, seems very straight forward. After I was diagnosed, I got 2 surgical opinions & both utilized the external surgical approach for the reasons stated in my previous email. The intraoral approach provides limited access to the styloid & basically no access to the s-h ligament. The styloid can only be shortened not completely removed at the skull base by that route. Ideally, you’ll want to have the styloid removed at the skull base & the stylohyoid ligament also removed as it often also calcifies and itself can cause ES symptoms in the absence of an elongated styloid process. There have been incidents of regrowth of the styloid in cases where it has only been shortened not fully removed.

You have posed an interesting question regarding the removal of one styloid process w/ attached ligaments & a potential ensuing hyoid imbalance. As I had bilateral ES & had both styloids & both s-h ligaments removed, I never had that concern. I will say that there are a significant number of people who have posted on this forum over the years with unilateral ES, & I have never read of a complaint regarding imbalance except by Aussie77 whose surgeon apparently did quite the hack job on him. You can look him up under the members tab & read his posts.

Tongue disfunction post op due to ligament removal: The stylohyoid ligament plays a small role in swallowing, so it’s removal doesn’t present much of a problem post op. I have occasional swallowing issues (i.e. swallow water down the wrong way), but nothing debilitating. Most people w/ tongue symptoms pre-op fully recover tongue function post op.
I had an unsual situation in that my hypoglossal nerve was wrapped around my rt. styloid, & in the process of being partially unwrapped so my styloid could be shortened, it received some damage. It took close to a year for me to regain what I’d say is 98% of full function of the right side of my tongue, but not having the pain & other symptoms generated by that styloid & s-h ligament is worth everything I went through w/ my tongue. I can’t answer specifically about the other 2 ligaments/muscles except to say that I haven’t missed them. Tongue movement, speech, etc. are fine.

I, too, am very active & actually had a cycling accident w/ head injury between my 2 ES surgeries. I have no idea to this day what happened, but I have wondered if I blacked out while riding because my head position caused my remaining styloid to put pressure on my carotid artery causing it to momentarily close off & reducing blood flow to my brain during vigorous cardio activity. I’ll ever know for sure. This info is not meant to scare you, but it is important that you pay attention to what your body is telling you until your ES is resolved. I knew I was having issues (from ES) when I did vigorous aerobic exercise, & I stupidly chose not to heed the warnings.

Neck mobility & strength post op: In most cases, it’s actually better because there is no longer impingement from an elongated styloid or calcified ligament. It does take a couple of months post op to regain full function & you may have prolonged numbness to the touch in the area of the incision. Numbness is quite tolerable when compared w/ ES symptoms.

Finally, I’ll answer your initial question: Surgery is the only “cure” for ES. Symptoms can be treated w/ various medications & therapies, but over time, the styloid(s) will continue to grow &/or the s-h ligament(s) will continue to calcify so symptoms will get worse. Having bilateral ES surgery has given me back my life & ability to be active. I am thankful that I made that choice.

Apologies that this post is so long, but I wanted to answer your questions thoroughly.


#6

Thanks for the thorough answers. I’ll schedule the follow-up at UT Southwestern and see what additional information they can provide. My symptoms do not yet include the sharp pain that some describe.

Mostly, my symptoms are:

  • sensation of something in my throat
  • Fullness/tingling/ache along jawline, neck, and up toward ear
  • Ache behind left maxilla area
  • tightness/ache neck, base of skull on left
  • Fullness below/medial to left ear
  • sense of pressure/pulsing on left side

The bothersome part is the persistence of them. There is comfort in at least knowing the cause.


#7

Sounds like you have a good plan. As you may have observed from reading other posts, ES has symptoms that are common to many people but a whole subset of less common symptoms that seem to be more individualized. I had symptoms that no one else has posted as experiencing & others have had symptoms I never experienced. Your symptoms all sound like those produced by ES so that’s the good news!


#8

Thad can you report about your experience at UT Southwestern?


#9

I chose to delay surgery for now from Dr Chen, I could never find anyone else who had used her but she told me she’s does more than anyone else in the DFW area, that if she does just 3 a year then that’s more than anyone else. I am scared of the risks so I’m living with it as long as I can before I take the plunge.


#10

Sorry for the delay in update. I had a follow up with Dr Agan at UT Southwestern. It sounds like they have had good success with the ES surgeries that they have performed there, considering it a pretty routine surgery. I got the impression that the number of surgeries is relatively low, compared with some of the specialists here. All in all, mine is not yet at a point where it impacts me enough to have it removed. Having the diagnosis known helps a lot.


#11

Glad you’ve found a good medical resource. You’ll know where to go if/when you decide that surgery is your next step! Thank you for the update, Thad!!


#12

I wanted to provide a (likely final) update to my Eagle story. See above for more early detail. Too often the stories after surgery are those that have poor or mixed outcomes. It seems like those that have successful surgeries don’t come back to share and reassure.

tldr: Diagnosed in Sept 2017 by my ENT who has at this point, done the surgery three times (two extraoral, one intraoral). After researching, I decided to go with Dr. Samji, being one of the docs that has quite a lot of experience with the procedure and presentation. My left styloid was removed pretty close to the base. Surgery was outpatient and took about 60 to 90 minutes. I was off pain meds in about three days, released to fly home at one week. Chilled at home for another week, but felt fine to drive and do other, routine, non-work stuff. There was some swelling, that peaked at day 3-4. Scar closed well and was nicely approximated. I did start to form a more bulky keloid scar, so I’m now wearing the silicon scar treatment things to help flatten it out (I’m very pleased with the scar, but why not try to minimize it as much as possible). Week three to four: back at work and normal routine. I do have some numbness above the incision (an inch or so) and “first bite” symptoms on the side of the procedure, but its not a big thing to deal with and I’m sure it will improve.

Learnings:

  • It’s not only about shortening the styloid. There are ligaments and structures that are attached along the length of the styloid that contribute to the sensations you are feeling. Addressing or “releasing” these during the procedure helps to resolve some of the “tightness,” pressure, and tension like pain.
  • Intraoral is tempting and may work for some. However, the surgeon is essentially working in a hole. Understanding that there is more work to do than just breaking off the end of the styloid made the decision to go extraoral more clear. In fairness, I’m sure some surgeons have the intraoral approach down though. My other consideration was added recovery pain and increased chance of infection (your mouth can never be sterile and it takes about 48-72 hours for a wound to heal to the point that it’s considered “waterproof.”

Unexpected benefits:

  • Sleeping better, probably due to less pain.
  • Can now sleep on back, helped airway (NOT AN EXPECTED OUTCOME by me or the surgeon, but I’ll take it.
  • Blood pressure dropped about 10 points into normal range. May be from less stress or pain, perhaps it was relief from a vascular symptom. idk…
  • Seem to have less ringing in that ear.
  • Feel less tired, especially in the mornings (may be from better sleep).

In retrospect, I had experienced symptoms for ~4 years to varying degrees. For about a year, I tried stretching and PT to determine whether I could minimize the symptoms. I came to the conclusion that I would eventually have surgery, so should face it head on.

I liked Samji’s demeanor and approach. My initial consult with him was over the phone. His medical assistant coordinated much of the pre work, including getting images and reports for him. He’s done the procedure well over 200 times and has good insights on the different ways the anatomy can present. He’s a pleasant, but factual guy and kept out conversation grounded. I felt well informed of the risks and felt like I was in control of the decision to proceed or not. He also has a clear and well established post surgical care plan that gives you a good perspective on what to expect.

Now I continue to be under the care of my normal ENT. It was a difficult conversation (for me), to let her know that another surgeon was going to perform the procedure. I set up an appointment for the week after surgery that served in continuity of my care and as a show of confidence in her ability to provide care in the long term.

Overall, scary experience, logistics (I travelled half way across the country for surgery), coordination, and time off work were a bit of a pain, but happy I did it, happy with the surgeon I chose, and the outcome. Still some healing to do, but quality of life is improved and it’s great to have the procedure in the rear view mirror! My other side isn’t as long or symptomatic. I’ll share if I need to go in for the second round :wink:

So, As of 2019, I don’t really feel like I’m living with Eagle Syndrome anymore, I have better things to think about. Thanks for all the great information on the site! Being fair, there is some info that was less helpful/accurate, so for n00bs, be sure to research with a critical eye. Best of luck on your individual journeys. I hope my experience helps to return the favor for those that shared and helped me.


#13

Glad that you’ ve had surgery & are pleased with the outcome! Thanks for updating us, as you say not everyone does & we don’t always hear success stories! Best wishes for your Eagle free future


#14

Hi Thad!

So glad surgery is behind you! I really appreciate your thorough assessment of your experience w/ Dr. Samji. He also did my surgeries & I can’t say enough good about him. I totally concur w/ you on every point. He did my surgeries when his numbers were in the 70s not the 200s but I felt every bit as confident in his abilities as you did. I hope you don’t need a second surgery, but do keep in mind that the remaining styloid does often become more symptomatic after the first one is resected.

Enjoy getting your life focus onto other things than ES. It’s a much better place to be mentally.

May your remaining healing be rapid!