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Eagle Syndrome - Online Support Group

Anyone have success with a neurosurgeon

I’m seeing a neurosurgeon from front Franciscan health and even though he says both styloid are the longest hes ever seen he is trying to treat c3-6 disc damage and checking for throasic outlet syndrome he is not familiar with eagles at all .
I dont want to lose faith but I’ve been suffering for years .I cant even drive anymore and spend most my days in bed.
Can hardle turn my neck, constant shooting pain.cant swallow or chew .my balance is so off ,I’m weak ,tires and nauseated all the time and I .always have some from of head and neck pain.
I’m at my end rope and tired of hurting.

If your doctor isn’t familiar with ES, then you need to try & see someone else! Your styloid process looks long & almost down to the hyoid bone- you need someone with experience of surgery in that area to tackle this!
Have a look at the doctors list- if there’s no-one close to you you may have to travel- some of the very experienced doctors like Dr Samji in Ca & Dr Cognetti in Pa will do phone consults if you send in your scan pics & reports. (If you do go down that route, there’s a discussion about what Dr Samji’s office need- search for CT protocol & it should come up)
If this isn’t an option, then see if there are any Skull base / Otolaryngologists in your area, or a Head and Neck cancer surgeon. Neurosurgeons have occasionally operated on members when they’re experienced in head & neck surgery, but as yours doesn’t seem open to the possibility that a great long spike of bone in your neck & throat could cause pain…then I’d want to see someone else! Good luck!

Helenee,

You have a doozy of a calcified ligament & elongated styloid! No wonder you’re in such bad shape. I’m soooo sorry for your situation!!

If I were you, I would not spend any more time with surgeons who aren’t familiar w/ ES. I highly recommend you contact Dr. Samji by emailing his medical assistant - lauren @ caminoent . com {without the spaces} to set up a phone consult; there is a fee but often health insurance will pay for it or at least part of it. He’s done more than 300 ES surgeries & is quite experienced.

It’s no wonder you can’t turn your head, swallow, chew, are off balance, tired, nauseated, etc. A number of your cranial nerves run through the area of the neck where the styloid processes & stylohyoid ligaments are as well as the jugular veins & carotid arteries. Elongated styloids &/or calcified s-h ligaments can impinge on these delicate structures & cause a multitude of pain, odd symptoms, & general debilitation. The most commonly affected cranial nerves are the trigeminal, glossopharyngeal, vagus, accessory & hypoglossal nerves. The facial nerve can also be affected as well as some others but less commonly.

The trigeminal nerve when irritated can cause facial pain & affect the ability to chew; the glossopharyngeal & hypoglossal nerves can affect the tongue & the ability to speak clearly; the vagus nerve can cause gastrointestinal problems (i.e. nausea), heart palpitations, anxiety, & a hoarse voice; the accessory nerve can cause shoulder pain thus you may not have Thoracic Outlet Syndrome but irritation of your accessory nerve; the hypoglossal nerve also affects tongue function.

I understand you’re in terrible physical shape from this. Do you have anyone who could help you travel to CA? Dr. Samji did both of my ES surgeries, & I’m 4.5 years out from them & doing great. I can’t say enough good about him as a surgeon.

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I had ES surgery 5 weeks ago at Jefferson Hospital in Philly. Dr. Cognetti has done over 100 of them. A Neurosurgeon does not do ES Surgery. There is a disease called Glossopharyngeal Neuralgia which is similar to ES but that surgery is “BRAIN SURGERY” make sure you see an experienced ENT for ES. PERIOD.

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Doesn’t have to be an ENT; I think more members are having surgery with Otolaryngologists now rather than ENTs.

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I am having surgery on 8/22. They are going to do both sides. I will have two surgeons in the operating room. One neurosurgeon and head and neck surgeon. My Dr. Is with Kaiser in Northern California. He has done 6 of these surgeries and feels very confident about my outcome. All 6 of his patients are doing fine.

That’s good but having both sides done at once is pretty tough…

Dear all

I saw today my neurosurgeon and i will have operation on 27/08/2019.
He explained carefully what he is going to do and the risk about the great nerve who regulates everything in the face. He makes a 3D head of me and the place of all my nerves and the carotid artery will be studied. I’m very scared. And he told me he is not sure that my clusterheadache will be gone. All the other pains will be: throat, neck, shoulder, ear, jaw, teehts, feeling of something sticking in my throat,… but not the pain in and around my eye he thinks and the headache attacks. I will have a scarf right before my ear, under my ear and a little bit behind and then down to my neck.
I have to get it done but the only thing i want to do is to run far far away from all of it.

Wishing you all the best for surgery

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Doctors never say for sure which symptoms will go after surgery because they don’t want angry patients afterwards!
Other members have found that headaches can improve after surgery, so it’s possible yours could too.
The pain around your eye could be down to the blood vessel being irritated by styloids, if there is compression, it’ll show on the CT you’ve had- if this is the case then it’s hopeful that this will ease afte surgery. Otherwise it could be a nerve being irritated; hopefully this will improve too, although if there has been any permanent damage it may not, but at least it won’t get any worse!
Hopefully your doctor will monitor nerves through surgery so they can see if there’s any stress on them.
Hope that your surgery goes well, will pray for you!

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Hi Lien,
I completely understand you wanting to run away. We all do/did. I had a complete panic attack two days before my surgery and I wanted to back out.

I had the left side out and now I need the right side done for the typical pains, but I also hope that it will help with the chronic pain above my right eye and for the shooting pain on top of my head. My surgeon tells me that surgery will only help the typical pain but I have to try. We all try - we want to be our best selves and we have to try.

I wanted both out at once but most US doctors wont do both at the same time. There have been a number here and many more not reported here that have had both out at once. The healing time will be longer but then it will be over. With one at a time the journey takes longer to get the point when we feel that its all been worth it.

Its been a very long road for you to get to this point. Good for your for being persistent. The surgery will be over before you know it then the healing can begin. The hardest part of healing will be for you to be patient and kind to yourself. It will take time to heal. Everyone is different so its hard to say for how long. I was back to work 10 days later but I was in and out of good/bad days. I am now 2 months post op and still working through some nerve issues, but it is getting better. You will have ins and outs of feeling better/worse but it will get better. Time (and ice packs) will be your best friend.

And don’t forget this wonderful supportive group. Reach out anytime, even to rant. We will be here to listen and send hugs when needed.

Peace,
BG

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Hi Lien!

I’m so glad you have a surgery date. I’ll put it on my calendar so I can pray for you that day especially. I agree with everything Jules & BrooklynGirl said. They are very wise & we have all learned so much from our ES experiences (both before & after surgery).

:sunflower:

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Pain around the eye can definitely be Eagles. I had pain around both eyes and headaches. In fact the right eye was diagnosed with Droopy Eyelid and dry eye disease and Glaucoma. The Glaucoma is permanent,but the Droopy Eyelid has disappeared and the dry eye disease is almost none existant for now after 3 years of pain. The facial nerve was being compressed by the styloid. However, doctors all believe the occipital nerve is too high to be affected. I think the compression of some nerves interfere with others, but we will probably never know. The headaches can come from the facial nerve. Just wait and see how much is left. It is all we can do. Prayers for you on Aug 27.

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Hi Lien,

My surgery is the same day as yours. Hitting the 2 week prior date yesterday was rough and I kinda had a mental meltdown and pity party wondering if I made the right decision until I had a stern discussion with myself and went into a better head space. Keep positive and take care of yourself. I am trying to focus on what brings me joy and taking time to smell the roses to refocus my energy to a positive light. I will pray for you as we get closer to surgery. Brighter pain free days are ahead! There are a lot of us having surgery in the next few weeks…hugs and prayers to all!

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Thank you Jules and Isaiah _40_31. My doctor is going to monitor the nerves through surgery. Thank you for praying. It 's so nice to have support.

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Hi BrooklynGirl and Emma
Thank you for your reactions and support. I have panicattacks too but know where they come from of course. Wish i was already post op. Thanks for your journey. It helps to be strong.

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Hi Kay
Counting down together and all the other ones…
We will pray together. A lot of candles will burn.
I hope all surgerys will go well. And after recovery we will dance and sing under a bright sky.

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Good luck. God bless you. Do you know the name of the doctor in Kaiser. I am recently diagnosed with Eagle and have Kaiser in Northern California as well. Best wishes

Hi Cali,
My Doctors name is Dr. Jian. I will be his 7th E. S. surgery. He is a neurosurgeon. I can’t remember the name of the head and neck surgeon who will also be in the O.R. with him. He is located in Sacramento, Morse Ave. I am scheduled for 3 p.m. tomorrow. Hope this helps.

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I wish you all the best! Would you like to talk on the phone to support each other. I am a lady 53 years old.

God bless you

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All the best to you Ilovemaui! Keep us posted on your post surgery progress.
BG

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