My name is Dodo 27 years and I’m from the Netherlands. Since 10 years I struggle with different symptoms and this year I got the diagnosis Eagle syndrome at both sides.
Soon i’ll get surgery in Radboud hospital in Nijmegen.
I would like to know if here are other people who deal with pain in the neck and back and did this pain dissapear after surgery?
The most days I’m not able to move, because of the stiffness and pain. The pain is getting worse every year and nothing helps (painkillers, massage, exercise)
Thanks for reading this post.
Hi & welcome!
I’m glad that you’re able to get surgery; we’d love to know the name of your surgeon if you don’t mind sharing it, as we don’t know of any doctors in the Netherlands…
What sort of painkillers have you tried? Quite often with ES the pain is caused by compressed nerves (by the styloids), so nerve pain meds can help, like Gabapentin, Lyrica, Amitriptyline…Otherwise muscle relaxants can help, & some members have tried lidocaine patches on their necks. Heat &/ or ice can help as well.
As long as the surgeon removes enough of the styloid then surgery is usually successful, but it can take a while for nerves to recover, so don’t expect it to be an instant cure, & don’t panic if it takes a little while for the pain to go. There’s lots of info about recovery from surgery in the past discussions, and also in the Newbies Guide. We also have a few questions if members want to ask their doctors, for example if the surgery is external or intraoral, if the surgeon removes the styloid back to the base of the skull…here’s a link:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Have you got a date for your surgery?
I am so sorry at your young age you’ve had to deal with this debilitating condition. I may have had it start around then, but I was also in a car accident that I attributed all my neck and back issues to. I have had a stiff neck and left sided problems for years, which progressed to affect my collarbone, first rib, shoulder and arm. In my case, my C1 is rotated towards my (former) left styloid… it was removed in November.
I can move my head to the left, can stretch my neck, still recovering so doing things slowly. But the advantage of your young age likely will be that you’ll be able to make a lot of progress with your irritated muscles. My felt like were in a constant spasm, which I have attributed to the nerves being irritated.
What helped me after this became really debilitating were Thermacare hot patches on the muscles, muscle relaxers, ibuprofren and after nerve pain increased Gabapentin (which I have a love/hate relationship with) … Doesn’t sound like you need nerve meds (?)… however you could try Amitriptyline which is in my opinion easier on the system than Gabapentin). As @Jules mentioned, Lidocaine patches were helpful for me. In the US they are over the counter (available without a prescription at 4% solution) and doctor prescribed with 5% solution. I would cut them and put on the styloid area and back of my neck.
Exercise can make it worse as moving your head a lot can constantly move the styloids and cause irritation to the nerves which affect your muscles.
@Jules mentioned, it is important for the surgeon to cut as far back to the skull base as if safe. Would be worth understanding this doctor’s procedure as well as if possible talk with prior patients regarding their experience.
Best of luck! Much of your journey is behind you… give yourself grace to get through surgery and recovery (more patience is required). Again, think age is on your side ))).
Hello, thank you both for the replies. They’re very helpful.
The doctor who will do the surgery is called prof. Marres. And both of the styloids will be completely removed so that’s good.
Thanks for the tips in terms of medication. I will look for lidocaine patches and ask the doctor about muscle relaxations. Usually I take ibuprofen or diclofenac. A while ago I took pregabaline (I think it’s Lyrica), it helped for the pain but there where multiple side effects.
Jules, thanks for the information!did you have surgery? I’m waiting for a phone call for the surgery date.
Leah, your experience and symptoms sound horrible. I’m sorry. Good to hear that the styloid was removed. For what I have read, the healing process can last up to 1 or 2 years, right? It takes time but it will probably be worth it.
I agree that I have my age on my side and am grateful the doctors found it out this year.
Didn’t know that exercise could make the symptoms worse but it makes sense!
So you took gabapentin and amitriptyline? Do you still use it or only occasionally? Hopefully your healing will be successful!
Good you’re confident with your doctor!
I did have surgery, yes, only one side at a time though, a year apart. It’s been really successful for the vascular symptoms, and the nerve pain/ numbness etc has improved to a point- I do still take the amitriptyline though.
Yes, healing can take up to a year so good that you’re prepared for that!
I’m so glad you’ve found a good surgeon who knows about ES and plans to remove your styloids as close to the skull base as possible. That should give you a very good outcome. We don’t have Prof Marres on our Doctors List but will add his name if you have a good outcome. Please let us know your surgery date when you have one.
@ Jules, good to hear that surgery was helpful! May I ask why the surgeries were 1 year apart? My doctor is going to do the same, first 1 side, and if I feel better the other side will be removed too.
@ Isaiah, yess I’m positive it will have a good outcome! I’ll keep you posted thankyou.
Most doctors like to leave surgeries at least 3 months apart to make sure you’ve healed well enough; I’m in the UK & our waiting times are long (it seemed long enough then, but even longer now!), so that’s why there was a longer gap.
Wow thats a long time waiting! Finally it’s over now
Hello, today I got a message that the surgery date is february 12th, so very soon!
That’s great! Will be praying for you
I’m really glad you got a surgery date so quickly! I’m putting it on my calendar & will pray for you that day.
Thank you both!
Hello, yesterday the surgery was successfull. There is 1cm of the bone left because it was too close to the facial nerve.
I got tramadol for the pain and went home the same day.
Monday the stitches will be removed and in 1 month I go back to the hospital to discuss if this surgery was helpful and remove the other bone too.
The doctors were very kind and profesional!
Best wishes for a speedy recovery, hope that the surgery is successful for you…Take care of yourself and keep us posted, praying for you
I had your surgery on my calendar so I said a prayer for you yesterday. I’m glad the surgery went very well. One month is a short time for recovery & you may still have symptoms when you go back to report. Pay attention to which symptoms become less severe or go away as that is important. Some of the symptoms that stay with you could be caused by your remaining styloid so that needs to be taken into account, too.
I hope you heal very quickly. I’m really glad you let us know your surgery went well so far.
Thats sweet, thank you for the replies
I’m convinced that it was helpful and many symptoms will dissapear but keep in mind that it will take time. And that some symptoms will stay. Thanks for the tips, and comments Isaiah i agree that one month is a short time. Will keep you updated! Have a nice day
I will look forward to your updates, @Dodo.