I am wondering if there is anybody from Norway at this forum?
So far, I think you’re the only person & maybe the first person from Norway to post. Sweden is the closest to you that I’ve seen on this forum. I’m attaching the ES Doctors’ List for countries other than the US. There is a doctor listed in Sweden who should be able to help you if you can travel.
Sadly w/ ES people often find they have to travel to get to an experienced surgeon who can help them. I hope this information is helpful for you.
OtherCountryEaglesSyndromeDoctors 2017.docx (22.5 KB)
Hi North Star - with the time difference I’m thinking you’ve had your surgery? Thinking of you! Let us know how it went when you’re up to it.
I am alive Surgery yesterday afternoon, intraoral on both sides. Lots of pain yesterday but a bit better today.
They took out 2 cm on right (was 3,8 cm) and 1,6 cm
og left (was 3,6 cm). Still swollen and in pain from so will have to update you when it calms down.
But the pain in arm and neck semes gone
Good to hear how you are, Northstar! Glad that you’ve noticed some improvements in ES symptoms already !It will be a painful for a while- having both sides at once is quite a big job, & intraoral too… Hope that you feel less pain soon, thinking of you & God Bless…
Thank you for checking in! So glad your surgery is done. WOW! Bilateral surgery is a BIG deal! Hoping you feel much better soon & am also glad you’re already seeing reduction in ES symptoms!
Take it easy. Let your family wait on you. Don’t jump back into your regular routine too quickly as it can set your healing back. Listen to your body & obey what it tells you!
Hi Northstar. Glad to hear that your surgery went well and hope you are doing good in recovery. I am new to this forum and I am from Norway as well. I was diagnosed with Eagles about 6 months ago and have been in contact with a couple of surgents so far and am currently on a waitinglist for surgery. Can I ask who and where you did yours?
Have sendt you a PM!
Hi, I’m Norwegian also! I had unilateral partial styloidectomy via intra-oral 5 months ago. Unfortunately I have gotten worse since that. So you had bilateral surgery done in one and the same operation…?I was under the impression that is not usually done? Did you get yours done at St.Olavs?
So sorry to hear that you’re not improving after surgery, it can take a while still for healing, some members have found things can gradually get better even a year afterwards. And have a read of didixon’s recent post, it might be encouraging.
Do you know how much of your styloid was removed? The intraoral route doesn’t allow for as much of the styloid process to be resected as the external route & so some doctors just remove the tip which isn’t always enough. Also, if the end of what remains is left sharp i.e. not rounded out, that pokey tip can also cause problems. If you don’t see some resolution of your symptoms over the next several months, you should contact your surgeon to find out just exactly what was done during your surgery.
According to the surgery notes 2,5 cm was removed, (as much as they could safely reach without risking damaging the n. glossoph.) and1,5 cm left, tip smoothed off.
Neither of the surgeons I consulted was willing to perform the external procedure unless the intraoral one turned out to be unsuccessful.
I guess I shall have to wait the elusive resolution of symptoms for another six months before considering a second surgery.
Hi Nemesis ~ Glad to hear that the tip of your styloid was smoothed off. The normal styloid length is 2.45 cm so it sounds like your surgeon removed enough to give you a decent result post op.
Just a thought: If you have bilateral ES & have only had one side shortened then it’s possible your current symptoms are coming from your other side. The remaining styloid or calcified s-h ligament often causes symptom flares that are worse than the original after the first side is taken care of. You won’t truly know how successful your first surgery was until the second side is taken care of as well.
The glossopharyngeal nerve does sometimes get in the way even in external ES surgery. Several people on this forum (including me) had 1-sided tongue paralysis for a number of months post op. Fortunately, it did heal over time.