Advice on surgery

Hi everyone.

I hope eveyone is doing good.

So ive just been diagnosed with ES and the only solution i have is the surgery cus ive tried medecine (antiinflamatory) but the symptoms are worsening and the pain too. The symptoms that i have are pain the my ear,jaw,teeth and head my doctor told me that all these are from ES so i have to do the surgery but its not for 3 or 4 months.but i cant take the pain anymore so i want to try therapy waiting for the surgery , ive seen that u can do therapy so please if someone tried it and can recommend plz tell me what kind of specialist and what kind of therapy they did and if it can worsen things.

im living in morrocco so this syndrome is sooo unpopular that they hadnt done surgery or if they have done it , its only one time so can u guys tell me about the surgery im scared and my parents are too and is it better if its buccal surgery (from the mouth) or from the neck .

Thank you.

@Nada - Things you can try to help reduce your pain are icing your neck for 15 min. every couple of hours. Use a thin cloth between the ice pack & your skin to prevent ice burns. If you can get gel ice packs, they work well because they conform to the shape of your neck. Having two ice packs is good so one can be in the freezer staying cold while you use the other one.

Another thing to try if you can get them are lidocaine patches. These have adhesive on one side & you can stick them on your neck & the lidocaine helps numb the nerve pain.

Since you have headaches, try sleeping with your head elevated at night. Start with an extra pillow & and if that doesn’t help, add more. A wedge shaped pillow is very helpful if you can get one.

Nerve pain medication which is not an anti-inflammatory but is usually an anti-depressant or anti-seizure medication. A few that have helped some of our members are Gabapentin, Amitriptyline or Carbamazepine. There are many others as well. Nerve pain medications can take from 2-4 weeks to start really helping so if you decide to try one, you’ll need to take it more than just a few days. These have side effects with the main one usually being to make you sleepy.

Some of our members have gotten good pain relief from taking a muscle relaxer. These are also prescription but can be very helpful. You would take this medication at night as it will make you very relaxed & maybe sleepy, too.

I hope your surgery date is scheduled sooner than 3-4 months. I’m sorry there aren’t any very experienced doctors where you live, but at least you’ve found some who know about ES & are willing to try to help you. Make sure you talk to them about cutting your styloid back as close to your skull base as possible because that will give you the best results.

Based on the surgical experience of our members, we think the transcervical (through the neck) approach is safer & provides better access to the styloids, & often a better overall recovery. However, we have members who’ve had excellent outcomes from the transoral (through the throat) approach, too. Regardless of how surgery is done, the most important thing is for the styloid to be cut back close to the skull base & for the stub(s) left behind to be smoothed off. It’s also important that any large sections of calcified stylohyoid ligament that aren’t attached to the styloid get removed.

I hope this information helps you.

Here is a link to a post about ES surgery that will give you more information:
ES Information- Treatment: Surgery

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Hi & welcome!
I’m sorry that you’re in alot of pain, & that you’re worried about having surgery…
@Isaiah_40_31 has given you lots of info about pain relief, as well as those medications some members have had steroid/ lidocaine injections into the area. These can help while you wait for surgery, but they don’t help everyone and very occasionally they have made things worse, so best to ask your doctors if they’ve every done these before, & think about it carefully.
Some members have tried different supplements, dry needling or acupuncture can occasionally help, there’s info here:
ES Information- Treatment: Pain Relief, Medications and Alternative Therapies - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Also in the section that @Isaiah_40_31 gave you the link to, there’s some suggestions for questions to ask your doctor about surgery to see how experienced they are.
Best wishes!

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Hi @Nada, I’m so sorry you are in pain and have to wait months for surgery! I also had ear, jaw, teeth, and neck pain, along with shoulder pain from my calcified ligaments.

I tried some of the things that @Isaiah_40_31 and @Jules recommended, I also stopped sleeping on my sides (slept on my back only with my head supported), and I also saw a physical therapist (might be called “physiotherapist” there) for 6 months before my first surgery. The physical therapist gave me neck and shoulder exercises to do every day that did lessen the pain for me. I also saw a massage therapist to try to release the tension in the area.

Each person is different but these ideas might be worth a try. Good luck and I hope time flies quickly until your surgery!

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Hi @Nada, I’m really sorry you’re going through this—having worsening pain and a 3–4 month wait is brutal, and it’s totally normal to feel scared.

Since you’re in Morocco: there are Moroccan doctors/centers who have published Eagle Syndrome cases. If you haven’t already tried this, it may be worth contacting the authors or the hospitals named in these papers. Sometimes that’s the fastest way to reach someone who’s already seen ES before.

Here are Morocco-linked papers:

  1. Choumi F, Ziani Y. “Eagle syndrome: report of a case” (Pan African Medical Journal, 2014)
    PubMed: [Eagle syndrome: report of a case] - PubMed
    Full text (PAMJ): Syndrome d’Eagle à propos d’un cas
    (Moroccan authors; Moroccan centers listed)

  2. Akhaddar A, et al. “Eagle’s syndrome (elongated styloid process)” (Internal Medicine, 2010)
    PubMed: Eagle's syndrome (elongated styloid process) - PubMed
    (Dept. of Neurosurgery, Mohammed V Military Teaching Hospital, Rabat; author contact shown on PubMed)

  3. Berrada K, et al. “Bilateral carotid dissection due to Eagle syndrome” (Radiology Case Reports, 2023)
    PubMed: Bilateral carotid dissection due to Eagle syndrome - PubMed
    Free full text (PMC): Bilateral carotid dissection due to Eagle syndrome - PMC
    (Rabat affiliations; useful if any vascular concerns are discussed locally)

  4. Lembarki G, et al. “Eagle Syndrome: A Case Report and Review of the Literature” (IJMPCR, 2022)
    Journal page: https://journalijmpcr.com/index.php/IJMPCR/article/view/307
    (Ibn Rochd Hospital, Casablanca listed)

Good luck — I really hope you find sufficient help soon, and I hope these papers are useful.

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Thanks again @TheDude ; I’ve added those papers & names to the ‘Doctors Who’ve Authored Research Papers’ category, very helpful!

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@TheDude - Very thoughtful & kind of you to find papers by Moroccan doctors to help @Nada. Thank you so much!! :hugs:

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