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Eagle Syndrome - Online Support Group

Who has been helped by surgery with this awful disease?

I would like to know who has been helped by this surgery to shorten the Styloid Process? Mine is coming almost through the Pharynx near my vocal cord, and I feel as though I have a sore throat behind my throat all the time. Looking for assurance that I dont end up worse off if I have this surgery. What are the major risks?

Hi Meman!

More people have been helped by ES surgery than have been harmed or received no help from it. The key is to see a surgeon who has a lot of experience doing ES surgery. A number of our forum members have had to travel outside of their home states to see a surgeon with a good amount of ES experience. If that is not a possibility for you, then you should try to find an ENT surgeon who is a throat cancer specialist & is also a skull-based surgeon. The three most experienced ES surgeons listed in our doctors list fall in that category. There skull/neck surgeons are also often skull-based surgeons. That type of doctor often operates in the area where the styloids are so even without specific ES experience, would still be able to manage a decent surgery to remove your styloids &/or any stylohyoid ligament calcification you might have.

The loss of your voice, sore throat, & heart/blood pressure issues could be caused by irritation of your vagus nerve. It is one of the cranial nerves often injured by elongated styloids &/or calcified stylohyoid ligaments. It can cause very wide ranging symptoms in your body from your skull to your intestinal tract. Also, the fact that your styloids are so long they’re nearly poking through your pharynx would be reason enough to get them removed.

Here is a link to our US Doctors’ List: US Doctors Familiar With ES, 2019

The three most experienced ES Doctors are Dr. Samji in San Jose, CA; Dr. Milligan in Phoenix, AZ & Dr. Cognetti in Philadelphia, PA. There are many other doctors who have done very successful ES surgeries. Generally, we have seen better results in cases where people have had external surgery instead of intraoral because the styloids can be removed back to the skull base, the stylohyoid ligaments can be removed, the nerves & vascular tissues can be monitored & healing is faster & post op infection rates are lower. That said, there have also been very successful intraoral surgeries.

The major risks are permanent nerve damage. This usually manifests as a lower lip droop, tongue paralysis, or facial pain. The risks of having these problems for the long term after ES surgery does exist but none of these happen very often. Many people do get one or more of these problems short-term but the symptoms go away as healing from surgery occurs. The risks of not having surgery are similar though - permanent nerve damage & possibility of a stroke in cases of vascular ES.

I had my surgeries in 2014 & 2015 - both done by Dr. Samji. Surgery gave me my life back.

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Wow! This was very informative information, and I appreciate that so much. The doctor that I have seen did not tell me how many times he has done this surgery. I guess my very first thing I should do is ask him. He is a cancer Doctor and ENT specialist. So I should ask him this info to start off first.

Hi Meman,

It sounds like you’re seeing the correct type of doctor. It would be good for you to know what his preferred approach would be to ES surgery i.e. external or intraoral. There have been some good lists of what to ask a doctor before having surgery that have been posted on this forum. You could try searching for that information using the gray magnifying glass icon above.

I’m glad my earlier response was helpful. You’ll likely get more good information from others on this forum.

He does want to do intraoral proceedure.

If you choose to go that route, ask if he’ll make multiple incisions in your throat to access as much of the styloid as possible & also so the stylohyoid ligament can be removed. The more experienced doctors aim to remove the styloid completely i.e. cut it back to the skull base not just shorten it (the average intraoral approach only allows for shortening of the styloid). They also remove the stylohyoid ligament to prevent the opportunity of future calcification & thus additional problems & the need for more surgery. Styloid & ligament removal can be accomplished via intraoral surgery but does require several incisions in the throat instead of just the usual single incision used to shorten the styloid.

External surgery allows for full removal of styloid & ligament w/ a single incision in the neck (one on each side in bilateral cases), usually along a neck crease, so when healed, the scar is virtually invisible. In bilateral ES, the more experienced surgeons require 2 surgeries at least 3 months apart to allow healing time from one surgery to the next.

hi meman.
The sternocleidiomastoid is a bummer with this Eagles. Lots of people do not know it. I had intraoral and it did nothing to help that. In my intraoral surgery apparently part of the styloid was left and part of the stylohyoid was left. That is common. The glossopharnygeal nerve was still pressing on the carotid artery and part of the stylohyoid was still playing havoc near my jaw.
I had bilateral eagles and my neck was pretty much locked and my shoulders hurt horribly. I could no longer chop vegetables, lift books, get on a computer. If your doctor does not do multiple incisions to get to the stylohyoid, which connects to the hyoid, you may not get all the relief you need, but you should get some. 5 years after intraoral, I had external done on the left( a redo of intraoral) and got some movement. Thursday will be a year since that surgery. Two weeks from now will be 6 months since a complete external of the right side. I am recovering from that well now. I had facial nerve involvement on that side and recovery has been slow, but I am finally gaining full use of my neck except for a bit of stiffness from degenerative disc disease. I am 68 and I can sleep at night for the first time in 3 years.
My second surgeon said this. The intraoral is least invasive. We like that, nothing wrong with trying it, but it was not the answer for me longterm. I am done now with 3 surgeries. Each has improved me, but the first one got worse after about 3 years. Your key is finding a SKULL Base Head and Neck cancer surgeon. Some cancer head and neck surgeons are not skull base surgeons. They are comfortable with intra oral, but not skilled in skull base.
Either way you go, you will probably get relief.
Intraoral is less invasive and less likely to damage nerves, but it cannot get to nerves that are compressing the styloid, carotid, stylohyoids.
Check out the cancer head and neck departments of the unuverities or cancer centers for a Skull base subspecialty surgeon if you can find one. If you are desparate for immediate relief and feel you must do something now, by all means do not turn down intraoral, but know that intraoral surgery though less risky is sometimes pretty painful and not a quick recovery either.
I had temporary facial paralysis for the first 3 months after my last surgery. I cannot say that it was an easy process. I can say that I had less surgical pain and needed less pain meds after the external surgeries.
I have been in neck and total spine PT for over a year in between surgeries. Finally after my last surgery, I am getting thar SCM muscle, other jaw and neck muscles functioning. First real progress in 5 years.
I got to the point that I knew I could never get better only worse and I could not function, but I could not find the right doctor. I hope you find the relief that you need.
PS If you can find a skull base surgeon near you and you have educated yourself on this site, you should be able to determine if that surgeon can do your surgery. My second surgeon was not on our radar, but he was familar with eagles and operating behind the ear and in the neck for cancer patients. Jules, Isahiah 40:31 and other members can prepare you to feel cofident when you pick your surgeon. Mine was close to home and definitely better for me than one of the other popular surgeons, because one of the other surgeons refused to redo the left side before doing the right. I knew that I could not go through the surgery on the right side while the pain on the left was so bad. The surgeon that I picked agreed. Both top notch surgeons just different criteria for how they operate.
I am always long winded, but the more you know from all of us, the better decisions you can make for yourself based on the care you can find and afford. Yes, if you can get to one on the list, you have a start in the right direction.
Read all of our stories. None are easy, but most get better. There are no guarantees, but we are seeing a lot of progress. Wish we or our doctors can give you guarantees.

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Thank you Emma,
I am sorry you have had to suffer this awful syndrome. I have been suffering from an awful Sternocleidomastoid twitch, or involuntary jerk for about twenty years. They diagnosed me originally with Tarrette syndrome, but it didn’t make sense because it mostly happens when i lay down to sleep. I have been having pain in my shoulders as well. I am pretty sure it is from some nerve being affected from this. My neck hurts so bad, but I would rather have pain than loose movement of my face. This sounds so scary to me. I just wonder how long I will be able to take the pain. I also have been feeling like my heartbeat is beating really hard all the time, and doctors keep telling me everything is normal. I think that may also be coming from everything that is going on in my neck. This is truly debilitating, and I feel so bad for everyone who suffers from this. Thank you so much for your story, and I am glad to hear that you are doing better.

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Yeah, I know what you are going through. Truth is I and everyone else is scared. We have to face the fear and move through it. I found seberal articles of different people dying from it, and rhe autopsies could only link the death to eagles. Sidden death from eagles compressing the carotids. I just wanted a ghance at life with less paon and disability. I just prayed and made a decision. My right eye was hurting along with the rest and I got glaucoma. I was even more scared, but I had a gut feelingvthat the eye pain was from Eagles. It was a leap, but finding my doctor, who understood my pain and was confident, but honest about the possible complications gave me some real hope. Remember, it will be 12 to 18 months for the entire recovery.I am ciunting those 18 months from the last surgery becsuse some of the nerve issues do jot settle completely down on either side until the last surgery starts to heal. The brain likes symmetry. I am 6 months out from the last surgery. Now I can work on individual bad spots in my discs because my therapist and I have been able to relieve a lot of those forever locked neck and back muscles.
Call every university head and neck center and every cancer center for names of skull based neck surgeons in your area. They do not advertise. Ask you present surgeon lots of questions even if he knows so.eone to do external if he does not feel confident.
Now, I do not regret the surgeries, but it was hard to accept that I could get worse. I just knew that I would get worse and would never get better. I pray for Eagles patients everynight.

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The accessory nerve can be compressed by the styloids & that can cause shoulder pain. Also quite a few members have had heart arrythmias & it’s possible that this is caused by compression/ irritation of the vagus nerve.
Facial paralysis is a possibility if the facial nerve is damaged during surgery, but this is rare- nerves are monitored during surgery to check that they’re not being stretched. A few members have had droopy smile etc after surgery but this does generally heal with time.

I would freak out if I got droopy mouth or nerve damage to face. I cant take that chance unless there is no other options

Hi @Meman.

I completely understand that you would freak out. I had temp paralysis after the left side external removal 10 weeks ago and I absolutely freaked out when I woke to find that the left side of my lip didn’t move - my smile was crooked and I drooled. But that only lasted 4, 5 weeks tops. My recovery was up and down. I say that two months was my turning point. If you had asked me before the two month mark if I would have surgery on the right I would have said NO!

Now its mostly the left side scar tissue is a bit painful, but now that I am on my way to a full left side recovery I WANT THE RIGHT SIDE OUT. I see the difference what having it out feels like. I know the surgical risks and though I am scarred of the nerve complications, I know that I wont fully heal until it is out.

I want the remaining 5.5 cm styloid out because of the typical pain, but I also see more nerve issues that I did not have before. Twitching and popping is new and very upsetting when it happens. My neck muscles seem to be weakening and even chewing is tiring.

This is not an easy decision and only one that you can make. I am 58 and wanted to get this done sooner than later. Surgery and recovery gets harder with age and I am afraid of more damage the longer its left in place.

You also have to remember that the majority of people who have this surgery don’t post here - mainly because there was no post-op issues to share.

All the best to you.
BG

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Hello @Meman,

Just want you to know I am ~2 weeks post op and have had no nerve damage or nerve pain at all, which might not be the norm but it is possible! Of course I have the expected muscle tension, jaw soreness etc but that is normal and is slowly improving every day. My jugular vein and cranial nerve compressions were severe, 100% when I chewed, opened my mouth or turned my head so my risk of vein rupture was very high - this was not fully seen until I had the surgery (did not show on my imaging) I say a prayer of thanks every day for my surgeon.

Every surgery comes with tremendous risks. Eventually it will fall to how long you can live with how it is affecting your lifestyle and happiness. I wish you the best, keep on fighting the good fight!

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I wouldn’t know what normal even feels like cause I dont think I ever felt normal.

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It is very hard to believe that the medical community cannot derive a way to check vital veins and nerves that can be affected by this syndrome. I wish I could find out if this syndrome is what is causing my high blood pressure, and strange hard beating heart rhythms. I have had my heart checked many times over the years because of how strange it always feels, but they always say it is fine. I always feel like I am gonna have a heart attack at any moment. Has gotten worse the last year. I think maybe Carotid artery is involved, but no doctor has ever thought to look at that issue. I was diagnosed with MS, Tourette Syndrome, ALS, and other stuff. Those things never were a real diagnosis. I have had a head jerk from my Sternocleidomastoid muscle for years that caused those diagnosis’s. Every-time I go to sleep for the past twenty five years this has been going on, and I wonder if that is a possibility that is also caused by this Syndrome. I have not found any other members with those complaints however. Cant find any medical articles that coorate the two. I would love to hear if any other members have been having same problems or have been cured from that symptom. I would most likely do the surgery to relieve that horrible symptoms I have not slept a full night sleep in years because my head jerks all night until I wake up and get out of bed.

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@Meman
Actually they can do appropriate imaging to see the vital veins and arteries.

A CT with and without contrast to the head and neck visualizes this very well and did show mild compression in my case. However, the image was done with my head and neck in neutral - my 100% occlusion only occurred if i opened my mouth or turned my head! To do the imaging with your head positioned in another way besides neutral is called “dynamic imaging”.

My CT with contrast was followed by a venogram done by a vascular surgeon (catheter placed in the vein at your goin and fed all the way up through the jugular vein into my brain) which showed 70% occlusion of the vein - with my head in neutral. My case helped my surgeon to develope a protocol to have all venograms for ES performed dynamically in the provocative positions…working on the CT.

I too was MISdiagnosed with different neurological diseases like you, I feel your pain there! Now I am slowly going back to those doctors and trying to educate them about ES and CSF leaks.

You restless sleep may very well be realted to a vascular stenosis. Looking back for several years now I realized that I would wake myself (holding my breathe and doing a body tension stretch) many times in the night when my head fell into a rotated position - the position I talked about above!!! It was a reflex my body did to try and relieve the pressure from my vagus nerve and jugular vein that the styloid was compressing. All of my sleep studies were relatively unremarkable.

Everyone is different and I am not a doctor but this may be what you are experienceing. Now that the styloid on one side is gone (still have the other side that is long) it is much less severe and I sleep with my head blocked from rotating while the vein and nerves are healing.

If you decide to peruse further imaging I would recommed the doctors you have already mentioned and ask if they would do it with dynamic positioning…try and decider what your worste position is before you go in :slight_smile:

Hope this is helpful! Peace and all good

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@Meman I had a sonogram on my neck when my CT scan indicated ES and possible blockage of my carotid arteries. The blood flow was reduced not from an internal blockage, but from compression from the styloid.

Recently I’ve been having tics on the side where the styloid needs to come out. It tics, pops and hurts. The initial intense tic pain doesn’t last but the lingering pain sure does. I haven’t noticed it while in bed. It seems to be random for me. I cant imagine dealing with it for as long as you have.

I have had heart palpitations for as long as I can remember. I mentioned the palpitations after my ES diagnosis to my primary care physician. He said that the carotid, when compressed, will send signals to the heart to pump more blood, hence the palpitations. My palpitations post-op have decreased. Hopefully it will decrease further after my second surgery.

Be aware that nerves and nerve memory can take time to relearn post-op. Nerve irritation from surgery takes longer to heal then muscle but it does heal.

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Hi Meman,

The SCM is innervated by the accessory nerve which is indeed one of the cranial nerves often irritated by ES. It’s possible that whatever position your elongated styloid &/or calcified stylohyoid ligament end up in when you’re lying down, there is pressure being placed on your accessory nerve & thus you get the jumpy muscle response. There is a chance this problem could go away after you have ES surgery. You would need to remember it has been a problem for many years so it would possibly take many months post op for your problem to fully disappear. Additionally, your heart issues could be caused by an irritated vagus nerve. There has been much forum discussion recently on the many body functions affected by the vagus nerve when it is over or under stimulated. Heart rate & blood pressure are for sure among those. The vagus nerve is almost always affected by ES in some form or fashion. I had low bp & heart palpitations which resulted in breathlessness & light-headedness when I exercised as part of my ES symptoms.

At some point, vanity needs to be put aside in deference to being able to live life normally & fully. As JustBreathe & BrooklynGirl noted, lip droop, tongue issues, first bite syndrome & the like can result from ES surgery but don’t always, & almost always when they do, the nerves heal & those problems go away some months after surgery. They are inconvenient but not life threatening & for the most part do not affect quality of life. Sorry if this sounds harsh, but I feel strongly on this point.

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I believe there’s a research paper mentioned in the Newbies Guide section which shows that if a certain area of the carotid artery- the carotid sinus- is compressed by styloid processes it can also cause heart arrythmias, as well as the vagus nerve.

We will pray for you. By the time I had external surgery, I had no life. We have fought high blood pressure, migraines, heart palpitations etc. The drcision to have surgery is yours alone. Suggestion, right now a baby step. Start a sesrch for the right doctor. External surgery with an experienced SKULL BASE DOCTOR. If you find the doctor, I think you will realize that there are doctors who do know your situation. At that point, you will know that you have an option available. At that point, some of your fears may be reduced, then you can make a more informed choice. No one will force you into surgery, but you will know you options better.

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