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.
Hello all. Here an update from my side. I had the surgery Friday early in the morning. According to the doctors everything went very well. They went as high as they could leaving less than 3 millimeters (0.118 inches) and they smoothened that remaining piece. They took out approx 5cm but in many pieces.
I spent 30 hours in the hospital. Pain is considerably less than I was expecting. They gave me just paracetamol and some naproxen and after discharge advised only to continue with paracetamol (in The Netherlands it is rare to use stronger analgesics). I feel the “ES” pain in my neck and next to the throat but I guess this is due to the surgery. My headache, though, is completely gone which makes me be very hopeful.
That’s a really good amount to get removed & only a teeny stub left in, good work by your surgeon! I hope that you recover well, good news your headache has eased…you’re probably about in peak swelling time now, so it might make you feel worse, don’t panic if this happens, it’s very normal. Take care of yourself & keep us updated please!
@Felix - That is quite a large amount of styloid that was removed. Great that you were only left with a 3mm stub! Thank you for your update.
That you already have symptoms improvement is encouraging. If your pain does get worse over this week, as @Jules mentioned, you are in the days of peak post op swelling, try sleeping with your head elevated at night & icing your neck for 15 min. every couple of hours using a thin cloth between your skin & the ice to prevent ice burns.
I can’t remember if you told us the name of your surgeon, so could you please let us know who did your surgery? I’m so glad it was done thoroughly & expect you’ll feel so much better with that long styloid out of your neck!
Hi Isaiah and thank you for your message. Regarding the name of the Doctors, I mentioned I would first ask them if they minded that I mention their names (which I am sure they don’t, but just in case). I forgot to ask them the day of the surgery, but I will do so next time I visit the hospital.
As you predicted I did have a bad day after your message with quite some pain. However, the next day it was all ok again. I have to say that for the time being I am one of the lucky ones that don’t suffer the post-op that much. I am only approaching the 1 week mark but for the time being the pain and inflammation from the surgery have been much lower than what I had expected.
Regarding the ES symptoms it is very difficult to say what is still there and what’s not, because I am not doing any of my normal activities yet, but I still have low grade pain in most places I used to have. One symptom that has for sure disappeared is the pulsatile tinnitus on the right side. I don’t hear that at all anymore, not spontaneously nor induced by lying my head on the pillow on the right side (surgery side) at night. The downside of it, is that I hear it much more on my left side (which I would also not have expected given that my head drainage on the right side supposedly improved with the surgery). The constant headaches seem to have disappeared, but when I do some effort (not much as I am in recovery) I do have a throbbing headache for some minutes ( but this might be justifiable as I am still inflamed).
In any case for the time being I can’t complain about the post-op symptoms.
I’m glad you’re being realistic about how you’re still feeling after surgery and especially that your pain level has been low. Some of our members have noted that their tinnitus, whether pulsatile or not, increases after surgery. It’s likely due to the swelling in the throat & neck causing some extra compression on the IJVs. We also have noted on our forum that people who have bilateral styloid elongation & bilateral IJV compression often need to have both sides operated on to get the best results overall. It is important to give your body time to heal though i.e. several months before even thinking about another surgery. Continuing to take care of yourself as you are now will help your recovery move along. When you start being more active, do it gradually so your body can slowly get used to being more active again. That will also help reduce the chance of symptoms flaring up as everything is trying to heal.
Thank you for your update. Please continue to let us know how you’re doing as you heal.
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.
