I’m glad you’re healing and have seen improvements 
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Yes it is 
it will take a while but will be okay.
The other doctor doesn’t know the cause of the infections, but suggested to do surgery. Next week we will gave a phone call. I also have a chronic nose infection, but Mometason nosespray helps me. Do other people here have the same problems? 
I thought it was because of Eagle but it isn’t.
Sorry for the late reply!
Greetings🌺
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@Dodo - Is your surgery consult for your next styloidectomy or a surgery to try to help stop your ear infections? I had a terrible problem with ear infections when I was a child. I finally had my tonsils removed and that stopped my ear infections. If you still have your tonsils, maybe a tonsillectomy is worth considering.
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Pitching in re tonsils. Check whether you might have hidden deep tonsil stones that aren’t visible from outside. Talking from my own experience. It can be hellish experience, feeling like there is a cherry stuck deep in the nose.
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Hai, it was about the ear infections. We made an appointment for coming over to the hospital to talk about it and the foctor is going to take a look again.
Very good to hear that worked out for you!
will also talk about it with the doctor!
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Thankyou for this, I didnt know yet! Are your tonsils removed?
no, I still have both of them
Hi Dodo,
I recently joined this group because I was diagnosed with Eagle (75% sure, but now waiting for a CT to be 100% sure) and I read your post. I searched the group for “the Netherlands” and there you were… telling your story about your surgery here (was it in Radboud)? and I was wondering about how the process went and how you are doing right now.
Cheers,
Monique
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Hello
Im sorry for you. When is the CT scan? And did your own NTE do the diagnosis?
Last year i got diagnosed and sent to UMC Groningen, the NTE didn’t want to take the risk to do surgery because the styloids weren’t long enough, so he sent me to a neurologist because of nerve pain. So i didn’t do that and got back to my own NTE, my two options were Lumc (Leiden) or Radboud. Radboud had the shortest waiting list so i went there, did some test, discussed the symptoms and agreed to do surgery. The waiting list could last up till 6 months but because there was a free spot I didn’t wait long. Everything went quick, surgery was like 1,5 hours, through the neck (outside). I went to recovery room for a couple hours, and was allowed to get home the same day if i finished my meal 
My neck felt painful and I couldn’t eat for 3 of 4 days, only liquids. After 1 week the stitches had to be removed but my own doctor didn’t want to take responsibility so sent me back to Radboud. This was too far for me so I found someone in the area who removed the stitches.
Some days it still hurts a little bit. But it takes time. I’m happy I did the surgery, it’s one of the best things I did. I don’t have the pain and tension in my neck and back anymore, and no facial pain on the surgery side. The first weeks I was still very tired and weak. I got tramadol but only took it once.
There was a bump behind the stitches, it’s still there but became smaller. Probably it’s scar tissue but the doctor will check next month when I get surgery on the other side.
There’s also a small community on Facebook, Eagle Syndroom Nederland. There are experiences and tips from others. Maybe that is also helpful for you.
Also there are risks, during surgery there is a chance that the nerves will be touched what can lead to a (temporarly ) paralysis of the schoulder, or tongue.
Sorry for the long post. If you have questions just ask. Also available in Dutch
Groetjes Dodo
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Glad that you’re pleased with the outcome from your surgery @Dodo! Have you been able to massage the scar, sometimes that can help if it’s bumpy…I’m glad that you’re considering surgery on your other side & hopefully can get that done…feel free to PM each other in Dutch, so kind of you to reach out & help others
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I’m so glad you’ve gotten good results from your surgery. It does take awhile to get your energy back & start feeling better after the surgery, but it sounds like you’ve done a good job taking care of yourself so your body is recovering well.
Would you please give us the name of the surgeon who did your ES surgery so we can add him/her to our Doctors List. We don’t have the name of a doctor for the Netherlands. Thank you!
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Thank you so much for your detailed response! For the past five years, I’ve been dealing with constant neck pain, earaches, tinnitus, and facial pain on the left side. This journey has taken me from Guatemala and Mexico back to the Netherlands in search of answers. Despite numerous misdiagnoses and ineffective treatments, my determination led me to a new GP who initially suspected TMJ, despite my insistence that my jaw was not the issue. It was during a tearful visit to a new dentist that everything changed. He recognized my symptoms as Eagle syndrome, a condition he himself had experienced. Although a subsequent dental surgeon didn’t confirm it, Botox injections provided no relief. Frustrated, I returned to my GP, who referred me to a pain clinic where a diagnosis of occipital neuralgia and steroid injections also proved futile.
Persistence paid off when an ENT specialist suggested a CT scan of my middle ear, which finally revealed an elongated mastoid. Now, with a pending neck CT scheduled for July 18th, I am hopeful for clarity. Despite my initial doubts about finding expertise in the Netherlands, your successful surgery has reassured me. I’ve also joined a Facebook group for Eagle syndrome in the Netherlands to connect with others facing similar challenges.
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@Mona - Good job advocating for yourself! I’m sorry for the run around you got from so many doctors but am so glad that your persistence paid off & especially that you now have a good ES surgeon resource from @Dodo.
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Well done for not giving up, it’s quite a journey you’ve been on! I’m glad you’ve connected with some other ES people in the Netherlands, and hope that the doctor will be able to help you
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Hee, omg what a journey. A little luck that your dentist discovered it, and had knowledge of it. And good of you that you’re not giving up. I can imagine how frustrating this is.
It’s shame to hear that no other doctor suggested a CT-scan before.
I hope you will get surgery. Can you send an update after the scan?
Good luck !
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Thankyou!
Good tip, I will start massage the scar.
Yeah the second surgery will be done soon. Thanks for your support ! 
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Yeah that’s true, it takes a while but it will pay off
The name of the doctor is H. Marres. An other doctor I’ve read good results of is doctor Langeveld in Leiden.
Thankyou
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Is this the doctor you saw?
Prof. dr. Henri Marres - Radboudumc
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@Dodo - is this Dr. Langeveld: A Langeveld - Universiteit Leiden
Once you confirm, we will add the two doctors to our Doctors List.
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Yes this was the doctor!
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