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Eagle Syndrome - Online Support Group

Personal responsibility

Is there a place on here that lists all of the complications/side effects both short and long term of surgery? I have pretty much decided to have it done, but have not found a surgeon I have confidence in yet. But the few I have seen all say it’s not worth the risk. I think daily headaches, ear pain, face pain, neck pain makes it worth the risks…but I’m not sure what all the risks are.

Hi LoriNola,

I don’t think there’s a comprehensive list of complications/side effects of ES surgery just random posts where people have discussed what they’ve experienced. I will attempt here to give you a good idea of what to expect - both the positives & potential negatives.

So let’s start w/ the positives: You’ll most likely notice your headaches ear, face & neck pain are reduced soon after surgery. Sometimes those symptoms are gone when people awake from surgery. In other cases, they take some weeks to months to fully resolve, but they usually go away nearly completely. If you have bilateral ES, you may notice some symptoms disappear while others remain & even might get worse. This does not mean your first surgery was a failure but simply that your remaining styloid is reminding you it’s still in there doing its “dirty work”. Once both sides are removed you’ll start down the path to greater freedom from ES symptoms. By 2 weeks post op, I was back to exercising but at a reduced level. After my first surgery, it took 8 weeks to get my energy back & start feeling like I could function normally but only 6 weeks after my second one. It took close to a year for some of my ES nerve symptoms to finally go away.

Now for the negative possibilities: If you have external surgery (nerves & vascular tissues can be monitored to help prevent injury to them & styloid & stylohyoid ligament can be completely removed), there are some cranial nerves that can get irritated during the surgery. The end result can be a droopy lower lip, tongue paralysis (one side only), first bite syndrome, shoulder pain, ear pain, slight facial paralysis &/or eyelid dysfunction (see Emma’s posts). If you have intraoral surgery, the styloid can only be shortened, not removed entirely & the s-h ligament cannot be removed. Nerves & vascular tissues cannot be monitored.
No one has reported having more than a couple of the problems listed above post op. I had tongue paralysis on the right side of my tongue after my first surgery because my glossopharyngeal nerve was wrapped around my styloid process & had to be unwrapped for the styloid to be resected. I also ended up w/ first bite syndrome. In most cases, these problems disappear over the course of 2 weeks to a year post op. Normally these problems are not debilitating, just annoying, but speaking from experience, I’d rather have first bite syndrome & less than perfect tongue function than have to live w/ my ES symptoms.

Have you tried contacting Dr. Nuss. He recently did bilateral surgery for Emma. She’s been very happy w/ the results so far & has spoken highly of him. I believe he’s in your state, though I’m not sure how close to where you live. You could try calling his office to see if you could get a phone consult if he’s not local to you.

•Dr Daniel Nuss, Lake Head and Neck Centre, Baton Rouge, Mary Bird Perkins Cancer Centre (Skull base surgeon)
https://ololrmc.com/site-search/search-results?q=dr daniel nuss
https://marybird.org/doctor/nuss/

Others will hopefully chip in their thoughts as well.

I would add in another negative/ risk- because the styloids are close to major blood vessels, most surgeons will mention the risk of a stroke or a bleed. Obviously a scary possibility, but this can happen with the styloids left in! One member I know of does believe that she had a slight stoke during surgery, but she had already had TIAs prior to surgery because of the styloids.
Personally, to have surgery or not was a decision I didn’t undertake lightly - but my quality of life was beginning to be affected so much & I began to get vascular symptoms, so that then outweighed risks. I would also say that doctors who think surgery isn’t worth the risk are generslly inexperienced & are wary of doing the surgery themselves! The more experienced doctors on here whose names you see mentioned regularly will still caution you about risks, but do feel that surgery will help you!
Keep searching for the right doctor!

Dr. C. really downplayed the risks of surgery to me. He said that he had two patients have temporary paralysis at the lips and another at the tongue - he emphasized temporary.

I am just over two weeks away from surgery and of course I am having second thoughts and I am nervous. All of the other doctors who said that it cant be ES are now in my head. A good friend even say to me that the surgery wont be that bad and I realize, with a heavy heart, that she doesn’t understand. People and doctors look at a “syndrome” as if it doesn’t exist or that it cant be that bad. I’ve heard “go for a massage” or “meditate” too many times.

On top of the pain and odd symptoms was the anxiety before diagnosis that is an entirely different layer to the syndrome. So many symptoms, some very debilitating that zap energy, spirit and personality. Though nervous, I know that I need to have the surgery. I am ready to put this chapter behind me and get on with life.

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Good for you, BG!! Contemplating surgery is never pleasant but the hope of a MUCH better life afterward gives us the courage to face it. It may take a bit of time post op for you to see a significant difference, & if you have bilateral ES (sorry I can’t keep track…) then it may take a second surgery on the other side to create more complete recovery from ES.

You’ll do great!! :+1: Dr. Cognetti is very experienced. He knows that “neck of the woods” very well :stuck_out_tongue_winking_eye:. I will say it’s been mentioned that he’s not very helpful when it comes to post op pain/symptoms so PLEASE come back to this forum for encouragement in that arena. It is a major surgery so does take some time to recover but within 1-3 weeks post op, you should notice a positive change in how you feel.

Have you posted your surgery date? I don’t recall seeing it. I’d like to put it on my calendar so I can pray for you especially that day.

:gift_heart:

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Thank y’all so much for the info. I am going to definitely look into Dr. Nuss, especially now that I know he did a bilateral for Emma. I’m getting a pulsed radiofrequency on Friday of the glossopharyngeal to see if it helps. I think it will since a lidocaine injection in that spot helped recently. But I know it will be temporary and just delaying the inevitable ES surgery so I don’t want to do it more than once or twice, My pain mgmt doctor wants to be conservative with treatment rather than surgery, which I understand, but if I can find a surgeon I’m comfortable with I want to be rid of these suckers!

I do wonder how much of my symptoms are ES and how much are from other issues like scoliosis (my curve goes into cervical). Nearly 10 years ago I had 2 nerve decompression surgeries and just about a year ago had a spinal cord stimulator put in. They have helped the back of head, but none really touched the daily headache, face and ear pain or sound sensitivity. Before each of these surgeries I had such high hopes and been let down that I don’t want to over-expect results from ES surgery.

Is there a way I can ask Emma about her experience with Dr. Nuss on a more private spot?

You can send a private message to emma- click on her icon where she’s posted, & the option to send a message will come up.

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Thank you Isaiah_40_31!

I have bi-lateral ES. I am having surgery done on the left first on June 17th.

The right side, not to be outdone by the left side, is ramping up and making itself be known - almost to the point (no pun intended) where I’m am having some doubts about which to do first. The left side is the shorter of the two, but its the one that’s given me most of the trouble for the longest time. Dr. C. said that its thick and it curls in. - so out it goes.

I am nervous, but as a good friend who has had many different surgeries said, “the doctor knows what he’s doing. It’s not like he has to open up a textbook.” Dr. C. may not be helpful post op, but he could write the textbook and that is what matters.

I keep you posted. Thank you for your prayers and wishes.
BG

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I did find the worse the pain got before my op, the calmer I felt in a way, I knew I’d made the right decision! You’ve had a long journey, glad that the next step is nearly here- big hug while you wait!

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I agree. It certainly would be hard to go through during a ‘low’ period.

Thank you for your support. Staying calm is difficult, but I have many tricks in my bag to do so. :revolving_hearts:

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Brooklyngirl
You sound like me. My left side was shorter , had been patially removed once, but was very thick. My doctor like Dr C agreed that it should come out first especially since my symptons were worse on that side. After surgery, my doc sent it for biopsy. It had just grown outward from the center like a bulb. My doc and Dr C are friends.
If Dr.Cognetti does not use a steroid IV during surgery , you may have more pain than I did. Dr.Nuss ordered Narco for seven days. I never filled it. At the 6 day mark, I asked for a few tramadol. I think I took 4 to 6 of those over a month.My second surgery was not very bad at all, except for the dry eye pain, which terrified me. I had to keep ointment in the eye and keep it taped to rid that pain. I mostly had 500 mg Tylenol and used only one of those every time I was in pain that kept me down. Probably 3 total a day. I am retired and can rest most of the time, though. Frozen gel packs against the ear were great. A wedge pillow and a travel pillow around my neck were the best. I could prop the gel pack on or into the travel pillow up against my ear.

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Thank you for the great advice Emma. I am making notes as I prepare to meet with Dr. C. before the surgery.

Thank you for the date, BG. I will put it on my calendar. My most painful side got done second though I begged for it to get done first. Dr. Samji felt strongly that my right styloid, though shorter, was thicker & angled dangerously (& indeed I finally realized was causing vascular symptoms) & needed to be removed first. He made the right decision, of course. The pain my left side was causing did escalate over the period until my second surgery. It was such a relief when both styloids & ligaments were gone!!

Your day will soon be here & the initial healing can begin! Good for you for having strategies in place to help you deal w/ symptoms & facing the upcoming surgery. Dr. C will do a good job & you’ll do great as well!

:hugs:

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Thank you Isaiah. You and Jules are like trailblazers for those to follow! I appreciate your input, advice and genuine compassion. I will keep you posted.

All the best,
BG

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How are you doing after your surgery with Samji?

The Eagle Syndrome surgery went great and I recovered from that well. I’ve got other things going on currently making me feel horrible and requiring surgery but nothing ES related. Still have a a bit of numbness under my chin from the ES surgery and my incision doesn’t blend in well but this is due to the way my skin heals and the placement of the incision. I’ve seen others that he has done that completely hide. Important thing is that most of my symptoms are gone. I still think it was worth it. Right side still not problematic, despite being approximately the same length (4 cm). It’s at a slightly different angle and not pushing through my tonsil.

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So good to hear this! Did you use those silicone sheets on the scar? And any problems with smiling or tongue movement aside from the numbness?

Hope you get the other issues sorted, thinking of you…hugs

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Thank you, emma, for your insight. Truly!

I did use the silicone sheets for a couple months, then switched to the Mederma cream with sunscreen. No issues with facial or tongue nerves!

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