It all started many years ago with pain in the neck, ear pain, pressure behind my eye and toothache all on the right side. Later it progressed to throat ache and strange body sensation in my throat. From the beginning family doctor treated symptoms as coming from different causes. Bacterial infection (antibiotics), Mycotic infection, etc. For neck pain I was referred to all types of manual therapies, fysiotherapists etc. After two years I progressed to being referred to ENTs, Neurologists, Cranial Sugeons. None of them found anything, but they performed MRIs and CT-Scans. One day I was fed up with pain and looking at a panoramic X-ray that I had I saw my styloid process and found them to look to big. I then grabbed all my scans and MRIs and using “Slicer” software I created a 3D scan. There I could see that my right Styloid Process and my Stylohyoid ligaments were ossified. Looked for an Eagle Syndrome specialist and asked my family doctor to refer me.
In 2019 I went to the specialist (Leiden University Hospital in the Netherlands) and the specialist officially diagnosed me with ES. For two years we treated it conservatively with Tramadol. 3 years ago, it got worse and since then I have been in waiting list for surgery. Last year I began having symptoms more related to IJV compression (pulsatile tinnitus, pulsatile headaches, etc.). A new scan showed that I have compressions on both sides (although I can also see the compression in older scans).
Luckly, my surgery is now planned for beginning of September. I am feeling quite anxious about it but also hopeful. I reality I have bilateral ES, even though only my right side is symptomatic, so I know i might need another surgery in the future.
I have read lots of posts about post-surgery advice, but if anyone has any ideas that think made a considerable difference in their recovery, I will appreciate any suggestions!!
I think resting propped up & icing helps more than anything…accepting that symptoms more than likely won’t disappear immediately but patience is needed is a good way to look at recovery too, as it’s easy to get despondent or anxious if healing takes a while, & a good positive attitude will help healing more.
There’s a surgery shopping list you can read up on if you’ve not seen it already, reading up is good, so hopefully you’re already prepared. Have you got a date for surgery now?
Thanks for your message. I have seen the list (and lots of your previous posts). I have almost everything ready except the oil for the scar (I am allergic to most suncreens so have to check for one without sunscreen). The surgery is planned for 5th September. I am very prepared psychologically. I know results and recovery times differ greatly. The doctor in Leiden has a lot of experience with ES so that gives me confidence. I have also read the stories of other patients of his (there is a Facebook group in the Netherlands for ES) and the vast majority have had good results.
This forum, the Dutch Facebook group and the specialised literature have helped me a lot understand what is going on and what to expect. The only thing I can do now is be prepared mentally and hope everything goes well. Thanks again.
@Felix - What great news that you have a surgery date! Three years is a L-O-N-G time to wait for surgery!! Do you mind telling us the name of the doctor who is doing your surgery? We only have one doctor listed for the Netherlands on our Doctors List - Professor H.A.M. (Henri) Marres so would be happy to add another name if that isn’t the doctor who’s doing your surgery.
Regarding sunscreen, my son is also allergic to most sunscreens but he recently found one on Amazon that his skin tolerated well. I don’t know if you can get it in your country but here’s the name: Tallow Sunscreen for Face and Body by Jardient.
I look forward to hearing how your surgery goes when you feel up to it.
Thank you for your message. Regarding the long waiting time, this was in part my doing. At Leiden Hostpital there is a surgeon very experienced with ES, but after I decided to have the surgery he stopped working for a while. I didn’t want to switch to another hospital or have the surgery done by his disciple and decided to wait until he came back. That took longer than expected…
Regarding the sunscreen, thanks for the recommendation (I normally use one from the US that my skin doesn’t react to). I mixed things up in my previous message, I meant that I don’t have a cream for the scar yet. In the shopping list in the forum, they recommed Mederma Scar cream, but that one has sunscreen and hence I can’t use it.
I will ask the doctor if he minds that I add his name (and the one of his disciple to the list). In any case I would say that there are at least 4 hospitals in The Netherladns where there are experienced doctors with ES:
1- LUMC in Leiden
2- RadboudUMC in Nijmegen: This one is already in the list
I’m glad that you’re getting prepared! I used Bio oil on my scar, it worked well for me, idk if you can get it in The Netherlands… Thanks for the info about doctors, & the research paper, I’ll add a link to that in the research papers category
@Felix - Mederma is also available w/o sunscreen. I used Mederma & it worked well for me, but there are a multitude of other scar creams & silicone scar patches available on the market. This one has gotten good reviews on our forum:
or this -
I’ll add the hospitals that know about ES onto our Doctors List as starting points for members from The Netherlands. Thank you for that list!
Thanks for sharing your story. I’m just beginning my journey to hopefully get a diagnosis for this. I wish you much success and health for your upcoming surgery in September!
@Felix - Hello, could you please clarify for what conditions and symptoms the doctor prescribed antibiotics and antifungal drugs? Was it related to ES in your opinion ? Was effective?
Sure. One of the symptoms I was getting years ago (before being diagnosed) was repetitive throat ache always on the right side. I think this was related to ES. My family doctor, after checking my throat, many times would say “you have a sore throat…it will go away”. When I would return after 2 weeks or so with the same complaint she would say “I think it is an infection…” and give me antibiotics. Later on she thought it was a fungal infection of the throat and gave me some antifungal liquid to do gargles. All of these were not effective as the pain was very localized to the right side which would be rare in infections. The pain in my throat evolved with time to “foreign object sensation” which is a known symptom of ES.
I am feeling quite anxious about it but also hopeful. I reality I have bilateral ES, even though only my right side is symptomatic, so I know i might need another surgery in the future.