Eagle Syndrome - Online Support Group

Fear of starting my new job

Hi Supersayianrulis,

You are too funny! :rofl:

I would not waste any more time or money on dentists or dental work or orthodontia at this time. Having your styloids removed should be your first priority as, in my opinion, that will make the most difference in how you feel. Once you are fully healed from both ES surgeries, then you will have some idea of how to proceed w/ an orthodontist or dentist to help your jaw & bite alignment. There have been several people here who have had jaw & bite issues that developed as a result of the restrictions a calcified stylohyoid ligament put on jaw movement. Releasing those restrictions by getting the styloid & s-h ligament removed did help with the jaw problems though I don’t know if it totally cured them.

In answer to your question about what Dr. Samji charges, his rate for cash paying patients is MUCH lower than if his office has to bill insurance. In 2015, I think his cash price was around $6500 for each side. It’s 4 years later, & I’m sure his surgical costs are higher now. There is also an additional cost for the anesthesiologist & the surgery center. In 2015, all the charges together came up to $9000+ (but under $10K). You will need to contact Lauren, Dr. Samji’s medical assistant, to find out what the current cash charges would be.

Thank you!

I would love to go to dr samji but my symptoms keep me from concentrating. I’m too busy at work thinking I’m going to die because of the pressure of work, symptoms, wife and money. My insurance at the moment gives me an appointment with dr milligan and covers everything. I did send the package to dr samji but I was hoping of getting by work for the first 7 weeks. I already spent 9 months in pain with so much anxiety and negative thoughts that I just feel like taking time off to get them out and heal. Once I get one out I know I will feel more comfortable and in a better state of mind for a job. To me money means nothing without being healthy

I completely agree! Without our health, we really struggle. You do have reasons to be anxious since you’re trying to support a family & your symptoms are pretty extreme. As terrible as you feel, it is very unlikely you will die from ES. Try to focus on the good that will come from surgery & imagine what it will be like to function normally again. These are healing thoughts that might help you be less anxious. Also, when you get very anxious, taking 5 minutes to sit still & take long deep breaths can help push anxiety away. When we are very anxious our breathing becomes shallow. This in turn can stimulate an adrenaline response which heightens anxiety. Slow deep breaths help reverse that.

I’m glad your current insurance will cover your office visits & surgery w/ Dr. Milligan. That in itself sounds to me like a sign that he is the one you should see. Dr. Milligan is an excellent surgeon. I don’t think you will have any regrets going to him.

I’m so thankful for you guys and I never met any of you. I admire you’re courage and spirits a lot of you do not deserve pain but god gives us our own cross to carry. At the moment I am struggling with suicidal thoughts because of the pressure I have in my life. Everyone expects me to be perfect and it’s all in my head so I just sit in the room all day and meditate. I come out to go to church or do a little job work on the side but then my symptoms ignite. I do believe that my first surgery will make a lot of my fear go away and make me work better. This is my first support group and never been in so much stress from the pressure of these spikes. Today I asked for some advice from an LVI group but I didn’t know you had to have a doctor of LVI to be in a group. I honestly feel that I do not fit where I am now but every time I go in this group and read people’s success stories I imagine the wet grass under my feet while I chase my sons laugh. I imagine family laughs while we watch home videos of the past. I imagine being able to chew correctly not choking on Panda Express. I imagine having a beautiful smile while I look at my neck with one beautiful scar. I imagine walking to class and sitting next to my colleagues arguing about policies and politics. I imagine running and playing the game I was born to play. I imagine my negative thoughts and fear gone and my sight being normal again. I imagine the sounds of my neck and head going away.

Please seek help if you’re feeling this low- there’s info about who to contact on the right side of the home page. It’s good that you are able to visualize a better future, keep those pictures in your mind while you’re waiting for your appointment. You have that to focus on too- there is hope that Dr Milligan can help you.
Keep strong, keep thinking of your wife & son , & feel free to talk on here, we understand how you’re feeling.

How did your eagles syndrome began? I am seeking help already it’s just aftershock.

I had neck problems for years, ever since I had a whiplash injury, & then experimental traction & manipulation treatment by a doctor, which made things worse.
The Eagles diagnosis was given after I started getting jaw & tooth pain- had some dental work done which made it worse! I also had a salivary gland stone, so was referred for that & on the panoramic x ray they did the elongated styloids were seen.

That’s amazing! You thought it was you’re teeth that we’re causing your problems. I had wiplash accident in July 2018, I ignored it and went on with my day. Then my toothache came out of now we’re in December of 2018. I thought I had an infection and there was nothing there. I got a root canal and my toothache was still hurting, I was clenching. Well you know the story, I know this surgery will give me back my life. You guys also made me believe that this surgery will relieve my mouth discomfort. Our stories are so similar it’s incredible

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I love the verbal pictures you painted about your life after ES! You will be there in the soon! Those positive images will go far toward helping you heal after surgery & are great for your frame of mind now.

Your appointment w/ Dr. Milligan will be here before you know it. :blush:

Thank you tomorrow is the big day. I’m excited and positive just nervous because I want this to be over already. The depression, weird eye vision, constant pressure on neck, side of the head, off balance, creputis noises, jaw pain, tense muscles, stomach bloating, foot pain and stress. Also, earl fulness, breathlessness, back pain, just the feeling of something pulling me down, shoulder pain, not being able to chew foods, chocking sensation, heart palpation, neck spasms, I’m just writing them down so I can remember everything I’ve been feeling.

Hope all goes well, & obviously we want you to let us know how things go! You don’t think you’ll ever forget how bad the symptoms can be later down the road, but it does fade, thankfully!

Good luck today, will be sending you all good for this appointment. I too have found it helpful to write down my symptoms every few weeks or so. It helps me to look back and see how far I have come as well as be organized for doctor appointments. Be well.

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Thank you! Have did you ladies treat scar tissue after surgery? My dentist wants to treat my TMD with cold laser therapy and I have physical therapy after surgery for my neck. Any problems using cold laser therapy on scar tissue??

Some people have had good results- as JustBreathe reminded us, make sure they’re aware to protect your thyroid.

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Appointment with Dr. John Milligan was excellent. He explained the procedure and did everything possible to exclude eagles syndrome. He brought in a Oral surgeon also to evaluate me as well as himself. He wanted to point out the correct symptoms of eagles Syndrome which all of them matched my symptoms. As for my stenosis and degeneration of the neck he wanted me to see a nuerosurgeon for a second opinion but I will be a great candidate for eagles syndrome surgery. I have a 3.5cm calcification and will remove 2.0vm external. I feel relieved but afraid this is the correct procedure for myself. I’m praying because I love my body I never thought I would have to cut it. I asked him about the back of the head symptoms and informed me that the back of the head is not a specific symptom. The most unique symptom is pain under the jaw well below the jaw. I had that severe pain for 3 months until I gave up and then my symptoms got worse. Stenosis, dizziness, blackouts, breathelessness, off balance,

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Glad that he is able to help you, ideally a bit more could be removed from your styloid, maybe he’ll be able to do that on the day. External surgery is good as the surgeon can see more of the structures around the styloid.
Have you got a date yet?

I’m going to let him know if he can remove all of it, I’ll pray for that so much. In five days they will call me for an appointment, I’m just praying this is the correct procedure.

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I completely agree with you Isaiah_40_31! My dentist said he was not doing another TMJ test because I didn’t have TMJ. My bite constantly changes even with night guard so he adjusts and sends me on my way.

Now the waiting game begins! From all the questions I’ve had from the overthinking and so many specialist. Dr John Milligan informed me to have a cervical stenosis second opinion from a Neurosurgeon. (Been there done that) I have mild degeneration when I told him that he was kind of shocked from having neck pain from having a calcified styloid. Ladies I have mild degeneration on the right side only of my spinal cord. C3-C6 mild ventricle narrowing, C-6 osteophyte on right side of spinal cord. Left side of spinal cord shows only narrowing but no pain is in my neck just an upper clicking I can hear below my ear and C-2. I’ve been through neurosurgeons before but now the waiting game begins! Styloidectomy is a go but he recommended another opinion of a nuerosurgeon.

I may have mentioned that my scans shown that I have moderated stenosis on my cervical spine as well has the elongated styloids (now with left removed.) No bone spurs. Before my ENT would diagnose Eagle Syndrome he wanted me to rule out all other possible explanations for the pain. He said that ES was so rare he didnt want me to jump into surgery. Who can argue with that.

So I saw a neurosurgeon and he said that pain that I was feeling was not from the stenosis but he could do surgery. :open_mouth: Yikes. On one hand my ENT was very cautious and the other was the neurosurgeon who wanted to perform surgery for something that exhibited no symptoms.

I have a friend who has been through the ringer with medical issues. She said that something can always be discovered on imaging that most times are nothing. And as our bodies age most of us end up with stenosis to some degree.

We are our own best advocates.

All the best.

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