Hi Anushka, apologies for not replying sooner - afraid I haven’t been checking the site recently. I had both removed at the same time.
Most concerned to hear that they do recur, as my surgery was quite some years ago.
Has your Mom had any success having her styloid processes removed? Sounds as if her symptoms were severe. Best of luck!
checking in… how are you doing?
Hi Emma
Can you share your register ? My daughter has 5cm each side & we are struggling to find Consultants that have knowledge of Eagle & done any surgery. As her mum (she is 35). I am trying to help find an expert who can help her get them out ! Thanking you Sharon x
Hello Emma,
Last week I had bilateral external styloidectomy in Mexicali, Mexico.
This was performed by Carlos Velez Landeros, Oncologist. He is experienced with this procedure and seems - so far - to have done a very competent job. My symptoms are relieved & I have few side effects from the surgery itself.
I recommend he be added to the list.
Thanks!
THH
If you look in the doctors info section the latest list is there, but here’s a link to save you time:
http://forum.livingwitheagle.org/t/updated-doctor-lists-5-10-16/1281
I’ll add him onto the list when it’s next updated, thanks THH!
Hi
There are two surgeons in Norway performing the procedure:
- Dr. Henrik Stenwig Li at Rikshospitalet, Oslo
- Dr. Nils Petter Fossland at St. Olavs hospital, Trondheim
I have seen both, and neither would take me because I “only” have calcified ligaments and not elongated styloids, but I know they have both done successfull styloidectomies.
Thanks for letting us know that, but very frustrating for you… do you have any idea what you’ll do next?
There are a number of doctor written articles about ES on the internet. ES is defined as calcification of the stylohyoid ligaments OR elongated styloid processes or a combination of the two. Below are links to several articles you could print out & take to the surgeon who declined your surgery to justify your surgical request & the symptoms of ES you live with. Perhaps he will reconsider once he’s seen that his idea of ES is only half of the story.
https://rarediseases.info.nih.gov/diseases/9401/eagle-syndrome
http://www.rightdiagnosis.com/e/eagles_syndrome/intro.htm
I hope this information is helpful.
hello, everyone, Keep posting doctors, I am not on the site much anymore do to severe neck and back pain. Others are trying to keep up the list. If I ever get better, I may help more, for now I just hope all of us become pain free. My styloid elongations are bilateral. The left side was done intraorally. It still hurts from time to time. I have a very specialized TMJ appliance that I use and it helps. Not sure if the pain is TMJ or styloid. It seems to flare when stressed, or when I get acid reflux or chew hard things or talk for awhile. The other side is very long, but not sure that it is causing problems. If I get other things squared away, I may have it removed (externally), or if it becomes significantly painful, I will run to a good surgeon.
Sorry that you’re still in pain, emma- thinking of you. And we’re doing our best to keep up the good work you started with the doctors list!
I second Jules’ sympathy note. I’m so sorry you’re struggling. So hard to live w/ constant pain. Praying you are able to get everything under control.
Michelle 1 hi your probably not on here anymore but your the only person who has been treated by Dr Stassen who im hoping can help me here in Ireland. Hope you can respond.
Hi.
It is many years since I had my surgery. I had every confidence in Mr Stassen at the time and have had no further pain or symptoms.
Michelle 1 Thanks for the reply. Can you please tell me a bit more about your surgery? Did you have externally and was it one or both sides? How bad were your styloids? And how long was your recovery? Sorry for all the questions but im desperate to get this done. Im in Ireland and ive been to lots of ents with no help. Dr Stassen is my only hope now. He said he could do both sides together which I found very odd. Did he take out all of your styloid? Im seeing him on the 11th April and he is retiring this year. Thanks
Bilateral styloid surgery is not unheard of. There are a number of people on this forum who have had both styloids removed at once. A day or two of hospital stay is required when this is done, but so far as I know, it’s just as successful as doing only one at a time.
Thank you my pain is different every day and sometimes not so bad but the feeling of it there and the pain can go from one side to the other its so strange! I just hope im not risking making things worse by getting surgery as my last surgeon changed his mind because I wasn’t in enough pain. All I know is I cant live with a bone sticking in my mouth.
Surgery is always a risk, but I think you’re making a good decision. The majority of people on this forum who’ve had surgery have felt so much better after. It sounds like you’re seeing an experienced surgeon which should help you feel more comfortable about having a good outcome.