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Eagle Syndrome - Online Support Group

Fear of starting my new job

Hi Gods_blessing!

Good to see a post from you! I’m glad you’ve found some therapies that are helping you. Our doctors’ list has been updated & there are some new doctors from your state on it now.

Thank you I couldn’t keep working I have to let my new job know I can’t concentrate. I keep praying but I feel like I’m going to pass out and not wake up. The back of my head cracks and my neck cracks. My nose was deviated after my septoplasty but Dr Milligan is under my AHCCCS insurance. I was hoping to see dr samji but he’s too far and I don’t have the money for dr samji. Do you know anyone I can talk to about dr Milligan so I can get the correct outcome and procedure. What is the difference between eagles and Ernest? I’m confused about it like today my vision was off and my breathing just didn’t seem right. Where I hear the cracking sound is on the right side of my jaw.

Hi S ~

Those are some nasty spikes you have there! No wonder your symptoms are so significant! Looks like you’re pretty well calcified from skull to hyoid bone on the right side. The cracking you hear is likely because your stylohyoid ligament is calcified & no longer flexible so when you move/turn your head, chew, even breathe, your jaw & neck area don’t have the mobility they should have for the movements they make during those activities. Your vascular symptoms are the ones that make you feel like you’ll pass out. They should go away after you have your styloid processes removed. I think Dr. Milligan will require you to have two surgeries. Most of the top ES surgeons will not remove both styloids at once.

Your vision & breathing being off likely have to do with cranial nerves that are being irritated by your elongated styloids - at the very least the trigeminal & vagus nerves & very likely some others. I can’t say what vascular tissues are being compressed but you’ll be able to get that information from Dr. Milligan. Do you still plan to have a consultation w/ Dr. Samji?

Ernest Syndrome is caused by a problem w/ the stylomandibular ligament where it inserts into the mandible (lower jaw bone).

Eagle Syndrome is elongation of the styloid process(es) OR calcification of the stylohyoid ligament (it runs from the tip of the styloid process to the hyoid bone) OR a combination of styloid elongation & s-h ligament calcification which is what you have.

I am sorry you had to quit your job today. I can imagine it’s hard to concentrate w/ the terrible symptoms you have. I can reassure you that surgery will help those symptoms to go away & you will be able to work and concentrate again in the future. Dr. Milligan is an excellent surgeon. He will do a good ES surgery for you that will help you a lot.

The styloids do look pretty elongated!

Yes I have an appointment with dr John Milligan on October 21st but I informed him if I can see him sooner. It’s really rare condition that I want to treat so I can move on with my life. Will the bones grow back and will he remove tissue on the hyoid bone?I see a few shards of bone as if it was impact. The recover will be long but as long i know there gone all my negative thoughts will be gone.

Hi S ~
You can call Dr. Milligan’s office & ask to be put on a cancellation list in case someone cancels an appointment that is sooner than yours. Most doctors’ offices keep a cancellation list.

As far as regrowth goes, it does happen. The more of the styloid that’s removed the less likely the chance for regrowth. You will need to talk to Dr. Milligan about how much of the styloid he removes & if he also takes out the stylohyoid ligament (though in your case, it’s kind of all one package).

Dr. Samji tries to remove the styloid at the skull base even taking a little bit of skull to help prevent regrowth, but that is not always possible. It depends on how close to the styloid process some of the cranial nerves exit the skull. Since we are each “designed” a little differently, the doctors can’t know this until they can see it during surgery.

I would not worry about regrowth at this time. There are many more people who get long-term help from ES surgery than there are who have regrowth & further trouble later.

Perfect!! Every question has been answered except for one, does eagle syndrome cause cervical stenosis and Lyme disease? I’m preparing myself now because I finally got a reschedule for dr Milligan on 9/11/2019. I’m showing him all of my head and neck ct scans and findings as well as my symptoms book. My brief quick story and inform him how important he is for changing peoples lives. I will ask to interview him and show him how support groups that people suffer from. We will be known! We will be free! We will be alright! Hopefully he sees what happens to my styloids and schedules me for surgery by the end of the month. October is my birthday and I miss spending time with family, my wife, my little boy, and playing soccer. Thank you guys I will see you soon

One thing I forgot also, any questions I should ask him? About the surgery and calcification?

Great news about getting an appointment sooner!! I will tell you that most doctors are not great fans of support groups like this one. They think we pass along false information because we tell people things based on our real life experiences. The doctors have not had these experiences & thus think our information is not accurate. You can mention the forum to Dr. Milligan but don’t be surprised if he is negative or dismissive about it. I know Dr. Samji & some other doctors are that way.

Lyme Disease is caused by a tick bite. It’s a bacterial infection & can be treated/prevented w/ antibiotics if taken w/in a 2-4 weeks of getting the tick bite. If the tick is carrying Lyme Disease & a person is bitten & doesn’t get treated early & Lyme Disease sets in, there are antibiotic protocols that need to be followed in an ongoing treatment plan to keep the symptoms of Lyme Disease away. This must be done under the supervision of a Lyme Disease specialist.

As far as ES causing cervical stenosis, I would think it might be the opposite - cervical stenosis causes ES. I say this because when there is a problem w/ the supportive structures in our bodies - bones, tendons or ligaments, our bodies tend to lay down extra calcium in the compromised area to try to create additional support. If the upper end cervical vertebrae have laid down too much bone for some reason, causing the spinal cord to get a bit pinched, it could be that those vertebrae have shifted a little & are creating pressure which has caused the body to lay down extra calcium in the styloids & stylohyoid ligaments to try to support the neck. If you’ve ever had a neck or head injury, this could be another “cause” of ES. We really don’t know for sure what causes it but there are several possibilities.

If you click on the magnifying glass icon (above right) & type “Surgery questions” in the search box, a lot of discussions will come up. Read through as many of those as you can & you will get great advice about what to ask & maybe what not to ask. You can also type in “What to expect post op” to learn about what happens after surgery. As far as calcification goes, the extent of your calcification is obvious in your scan. Dr. Milligan will have no trouble seeing what is causing your pain & symptoms.

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I have cervical stenosis, I was hoping I’m thinking of treating my ES my cervical stenosis will go away.

Stenosis is when the hole in your vertebra that the spinal cord runs through gets too small & the spinal cord & spinal nerves in that area get pinched causing pain. ES surgery may not help stenosis. It’s also possible you’ve been misdiagnosed (unless you have a CT scan showing stenosis), & the pain you have in your neck is actually caused by ES. In that case, it will likely go away after ES surgery. This is a question to ask Dr. Milligan. I will tell you ahead that NO surgeon will promise that any surgery will cure the problems/symptoms you have, but from the experiences of many people on this forum, in most cases, ES symptoms are drastically reduced or completely go away after surgery. It does take time though. Surgery is not a quick fix. Some symptoms go away quickly but others may take months to go. Since you’ll need two surgeries, there will be symptoms that will stay until after your second surgery. You need to be mentally & emotionally prepared for that.

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I have a mri showing cervical stenosis and a ct scan showing minor degenerative changes on C2-3 5/6 with bone osteophyte. Once I got diagnosed the first time I was wondering what caused that. My doctor told me it was not you’re tmj or nothing to do with your dental work. I refused to Believe him because I went to so many specialist to help me find what caused this. Once I gave up I just wanted to fix my mouth and TMD. That’s when I found out I have eagles syndrome and met this incredible group. I met a friend on Facebook who is an amazing mentor who got surgery from dr samji and is doing amazing from his first surgery. Most of symptoms subsided but he’s doing his second surgery October 28th on my birthday which that’s a sign from the universe. I read some cases of Es that trauma in the neck can trigger calcified bones. But physical therapy did not help and my upper cervical was not aligned right. Once I did a tmj mri I seen a bilateral signal and wanted to learn more. My brain kept telling me search this it’s not the correct diagnosis. I stop going to therapy and saw nuropathic doctor he suggested to check my sinus but after his cervical adjustment I had a really bad panic attack. I felt like I was going to faint and my heart rate was going so fast I thought I was going to die. Everything was fading away and ended up in the ER they said it was a sinus infection. I saw my ENT and ct sinus did not know deviated septum but my ent doctor said yup you’re nose is deviated and nasal collapse. They performed a septoplasty and my neck pain did not go away. I recovered from my septoplasty but I saw two more oral surgeons and 3 orthodontist because I wanted to fix my mouth and teeth. I guess by doing nueromuscular dentist approach with corrective jaw surgery I can fix the pain and neck symptoms. Then I’ll do acupuncture and ozone therapy with stem cell therapy in my neck to detox the blood and system. I saw the best dentist in Arizona dr smith who did a 3 hour thorough exam and saw Calcification of my styloid process. I’m waiting on a sleep study test and decided to hold of on dentist or neck therapy until i remove my styloids. My mind thinks that there triggering nerves and muscles on my neck causing energy to block it to my brain. I do believe that Es can cause cervical stenosis from what I have gone through. I begged nuerosurgeons to perform neck surgery so the tightness will go away and I can move my neck properly. When I put my hand behind my head and push up I can feel ligaments and creputis on my right side of my neck and jaw.

Having your styloids removed will certainly help your neck & may ease the symptoms of your stenosis. I’m sorry you’ve been through so much. Hopefully you’ll be able to have that surgery soon.

Your birthday is the day before my sister’s! I expect by then you’ll be in recovery from surgery #1 & planning for surgery #2. You should get the second one scheduled soon after #1 since Dr. Milligan books so far out. I was fortunate because Dr. Samji does so many ES surgeries that he usually isn’t booked too far ahead.

I have another question, some girl in the group on Facebook said she had relief from her symptoms by having tounge release surgery with myofacial therapy. I’m confused because I haven’t done anything but gathered information and have not done anything. I’m just sitting here thinking with pain with plans but no action fear but no relief. Can you have calcification with no symptoms? How do find out if eagles syndrome is causing you’re pain?

Myofacial release has helped some members, but isn’t a cure. The only cure for ES is to have the styloids removed. If it’s not possible for some reason to have surgery- insurance, can’t find the right doctor in your area etc- then it’s worth perhaps trying other treatments temporarily, but if you can get surgery then it’s a good idea to go for it! I would say that’s perhaps with some of your syptoms being pretty difficult to live with, & that you’re unable to work at the moment, that pursuing surgery is the best option for you.
I agree with Isaiah that not all doctors are interested in the forum, & some get quite cross about being named on them- don’t know about Dr Milligan- so I would be careful about saying too much! Also we were given advice from a former member who had to have quite a struggle to get surgery that it’s not a good idea to mention some of the stranger symptoms, to stick to the more common ones, as that can scare the doctors off. As Isaiah says doctors don’t guarantee that ES symptoms will all go with surgery, & if your expectations are really high that bizarre symptoms will disappear, it will cure everything wrong with your body it can concern doctors enough that they may not agree to do surgery. So I would perhaps go steady with what you talk about, there’s no need to mention the Lymes disease for example, & try not to view surgery as a cure all. And recovery will take time.
You asked how you find out if ES is causing all your pain- there’s no answer except to have surgery & see what happens! Some members have steroid/lidocaine injections into the area, & some doctors use this as a diagnostic tool as it can help temporarily with symptoms but it doesn’t always work.
You also asked if you can have calcification but no symptoms- yes it is possible. I can’t remember the figures but it’s thought that some people are walking about with elongated styloids & don’t feel anything.

I’m getting behavioral services from stress I feel traumatized because I don’t want to ruin my body anymore. Thank you for you’re support I’m just confused because I have a misaligned jaw with calcification on my styloids. I’m confused about what to do so I ask so many questions I apologize.

Feel free to ask, we’ll do our best to answer!

As far as jaw alignment…when the surgeon went in to remove my styoid he found it had grown long enough to actually attach to the back of my mandible (jaw bone) which was definitely restricting it’s motion…however, I have never had any TMJ/jaw pain or symptoms at all - ever, my body just adapted to it. I cannot say this is happening with you but it is something to consider as a possibility.

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I love this group

I’ve been researching LVI dentist about eagles syndrome. From the looks of it they seem good sales man but I see it as a hit or miss. The most complex about my situation I feel is the right side of my jaw hurting and neck being restricted with motion. When the styloids calcifies thinking biologically doesn’t that affect the teeth and structure of the jaw? I have a 50 page paper on eagles syndrome due next month lol.