You have been through what all of us have been through especially back a few years ago. Our forum has brought Eagles out of the dark ages into the 19th century. With this forum and our knowledge and all the recent articles being published, we might bring the medical field up to date. That said, Dr C is not a regular ENT or even a regular head and neck surgeon. He is a skull base cancer surgeon. They are the most knowledgable about that area of our anatomy.
There are many more around the country, but not easy to locate. They teach, and operate, and do not hype themselves all over the internet.
You will be in good hands.
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Thank you so much everyone. I have heard nothing but wonderful things about Dr.Cognetti. I canāt wait until he reviews my CT scan and gets back to me.
I wish I had read this before my surgery. I did not discover this forum until after my surgery and was panicking over the post-op effects.
This is excellent advice that I 100% agree with. Thank you for sharing. 
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bakarii86.
I found this forum exactly 4 days before my first surgery which was intraoral. I almost cancelle the surgery, but I was in so much pain for several years that I went for it. My doctor actually had Eagles and had previously had an intraoral surgery done on himself by his associate who had retired before I came along. My doctor had only done one intraoral surgery since then. He was very knowledgable about my pain and compassionate, So I decided that he was as good as any I would find anytime soon. He did a good surgery, but my styloid was apparently more tenacious and ultimately I had the extraoral. It took me over 5 years to finally have surgery because I had other seemingly more serious conditions, and I could not find a suitable doctor close. Dr Samji consulted with me and got my CT scan ordered over the phone. Ultimately, I chose another doctor because Dr. Samji did not want to operate on the already partially removed styloid before having a go at the other side. I knew from the pain and the knot in my skull base that most of my pain was on the other side. Miraculously, I found a skull based top doctor in my own area and the rest is history, but it took me 5 years to finally get there. You are right, the recovery and or the fear of the recovery are really mind boggling. I am still recovering from my first external surgery and through my second external surgery. I can tell that it will take awhile, but both sides are involved in the final recovery. I have some facial nerve paralysis. I am told that it is not permanent. I am improving on the eye paralysis, but it tends to be a bit of an up and down recovery. The mouth is not recovering very much yet, but it was the longest run from the skull and it was the most affected according to the facial therapist. Since full recovery can take up to 18 months, I am not very far along and for the most part, I am feeling much less pain in the head and neck. I am waiting for permission to have neck therapy and allowing my therapist to release tense muscles. It is a waiting game, but I am glad to have the surgeries done. It is easier facing the known complications.
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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 itās not worth the risk. I think daily headaches, ear pain, face pain, neck pain makes it worth the risksā¦but Iām not sure what all the risks are.
Hi LoriNola,
I donāt think thereās a comprehensive list of complications/side effects of ES surgery just random posts where people have discussed what theyāve experienced. I will attempt here to give you a good idea of what to expect - both the positives & potential negatives.
So letās start w/ the positives: Youāll 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 itās still in there doing its ādirty workā. Once both sides are removed youāll 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 Emmaās 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, Iād 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. Sheās been very happy w/ the results so far & has spoken highly of him. I believe heās in your state, though Iām not sure how close to where you live. You could try calling his office to see if you could get a phone consult if heās not local to you.
ā¢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 didnāt 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 isnāt 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 doesnāt understand. People and doctors look at a āsyndromeā as if it doesnāt exist or that it cant be that bad. Iāve heard āgo for a massageā or āmeditateā 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 canāt keep trackā¦) then it may take a second surgery on the other side to create more complete recovery from ES.
Youāll do great!! 
Dr. Cognetti is very experienced. He knows that āneck of the woodsā very well 
. I will say itās been mentioned that heās 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 donāt recall seeing it. Iād like to put it on my calendar so I can pray for you especially that day.
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Thank yāall 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. Iām 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 donāt 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 Iām 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 donāt 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 sheās 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 Iām am having some doubts about which to do first. The left side is the shorter of the two, but its the one thatās 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, āthe doctor knows what heās doing. Itās not like he has to open up a textbook.ā 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 Iād made the right decision! Youāve 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 ālowā period.
Thank you for your support. Staying calm is difficult, but I have many tricks in my bag to do so. 
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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 & youāll do great as well!
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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. Iāve 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 doesnāt blend in well but this is due to the way my skin heals and the placement of the incision. Iāve 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). Itās at a slightly different angle and not pushing through my tonsil.
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