Hi there.
After many years of feeling crazy when ultrasounds would show normal, I finally got referred to an ENT. After describing my symptoms, she was unsure, but had a theory that it could be ES. She wanted to order a CT scan, but “for good measure” felt around in my throat/neck, and is almost certain that she detected an elongated styloid, and rather confident that this is what is going on. I would have to agree. The CT scans she expects to confirm this. I am lucky that she sounds thorough, convinced and prepared to address the issue (she works with surgeons who have previously operated on a few ES patients who had successful outcomes).
I am curious to know what everyone’s experiences were leading up to surgery after diagnosis? How soon was the procedure ordered? How ambitious were your doctors/surgeons to operate and what was their reasoning?
Of course, I am hoping this is what is going on (so that it may be confirmed and have attempted resolve) and would love to have this procedure done sooner rather than later, but am currently making some life alterations right now with my location, work etc. I know well that life does need to be put on hold when health needs to be addressed, and I’m so very relieved in many ways that I have an answer. Glad to know there is a forum out here for this weird one. Thanks all. Hope you are well.
Welcome to this wonderful forum, mkalicet! You’re in the right place to get your questions answered by people “in the know” based on their experience with this quirky “bird”! By the time most people receive an ES diagnosis, their pain is sufficient that it’s negatively impacting their lives, and the offer of surgery, though scary sounding, feels like “a light at the end of the tunnel”. Let me say that you are fortunate to have found an ENT that is familiar with ES as many are not. There are many posts on this site from people who’ve had all kinds of challenges getting a proper diagnosis and from people who’ve had surgery or opted for alternative care i.e. lidocaine or prednisone shots, gabapentin or other nerve pain meds, etc. If you go to the HOME page link above, you will find a list of doctors in the US who have done successful ES surgeries. If you have trouble locating the list, I can send you the link.
I’ve had 2 successful surgeries for ES as both my styloids were elongated & both stylohyoid ligaments were partially calcified. Most doctors won’t do both sides at once because of the post op swelling in the throat. There are 2 surgical approaches - intraoral or through the throat behind the tonsils (usually a tonsillectomy is also performed if the tonsils are still present) or extraoral - through the neck. Their are pros and cons to each surgical method. I had & prefer the extraoral approach as I believe it gives the surgeon better visiblity of the nerves in the neck so they can be moved out of harm’s way. That said, both types of surgery have been successful in treating ES patients.
So there’s some basic info to get you started. I hope you find it helpful.
It does vary so much- I’m UK, so the wait was quite long for surgery, and as I had vascular symptoms too I was mighty glad to get the first surgery done! US members don’t seem to wait too long- if you don’t have insurance issues! I was told by the first doctor that I saw that he wouldn’t operate unless I was in so much pain I was feeling suicidal, and then he even retracted that and said he wouldn’t be prepared to operate full stop! He completely ignored the vascular symptoms and didn’t understand that these can be a part of ES. Luckily through this forum I found out about an experienced surgeon, and he recognised the symptoms I was having and was happy to operate. The surgery isn’t without some risks, so sometimes doctors who are not experienced in styloidectomies do like patients to explore all other treatments first, although these aren’t cures, they just manage the symptoms. And some members try other treatments first- painkillers and steroid injections, chiropractors etc.- and feel that they can live with it. So if you feel you have a lot going on right now, there are options to manage it if you do feel you want to put off surgery, although pain swallowing if you have that doesn’t always recede with the treatments.
So it is very much up to you, but the best advice is to see an experienced doctor if you do think about surgery, and make sure that they are prepared to remove as much of the elongated styloid as possible.
As Isaiah says, there’s lots of info in the Newbies Guide, and info about doctors if you’ve not had a chance to read up yet.
Hope that your next appt. goes well and that you find out what’s going on!
Thank you for these answers! Very helpful, and much appreciated.
I officially was diagnosed today; both of my stylohyoid ligaments are calcified. I am being referred to get another opinion/outlook for treatment with good reference.
We shall see! I am very open to surgery, as this has been nagging for a long, long time. I wonder how much energy I have exerted simply trying to ignore the symptoms. Feeling very lucky to have answers. Hopeful for treatment; I’ll find a way to get the procedure done for sure.
I was diagnosed in August and just had the surgery 2 1/2 weeks ago. I had both nerve pain and vascular involvement. When I was first diagnosed I found it very helpful to read many of people’s experiences on here and the Newbie Info. Since we all very so much with our symptoms, I found that I had some I had been living with that I didn’t realize were connected [the first 5 doctors I saw knew very little about Eagles], thankfully all of the support system on this site filled that void for me.
