Thanks for posting in this forum. I suspect I have ES. Have problems with neck pain on the left side. When I feel down at the root of the tongue, I feel a bone. Sometimes I feel nauseous, especially in the morning. At times, the pain radiates to the ear. I’ve had this for two years.
I have not been listened to when I went to the doctor. When they did a CT scan, they ruled out cancer and after that I feel that they think I am imagining. Have called a doctor and asked him to check my x-ray today, the answer came. He asked a radiologist to look at my CT scan. The answer follows below:
“Hint longer styloideus mastoideus on the left side with the tip hint more medialized than the right. Could be compatible with Eagle’s syndrome. ”
I would like an operation. But a doctor I talked to about ES said that this with surgery is a figment of the imagination and that it does not help any patient . But my question now is how do I proceed and get help? Is there anyone from Sweden in this forum?
I feel abandoned, sad and depressed about my situation.
Hej! If you can feel the styloid tips in your mouth, then there is a good chance they are quite long and could be causing your symptoms. As you’ve discovered, the Swedish healthcare system is not very good at dealing with this condition. It’s definitely possible to get help if you find the right people though…I have had one surgery already and am waiting on a second one now. Where in Sweden do you live?
EDIT: I see you live in Småland. I don’t know anyone there, but I can recommend my doctor in Linköping. I have also spoken with a girl who is going to have surgery somewhere in Skåne. One thing I recommend is to get a copy of your CT scan from the clinic so you can look at the images yourself and potentially show them to doctors outside your region. They should be able to send you a USB stick with the files
Oh thanks for your reply . I live in Småland. Thanks for the tip about a doctor in Linköping. Is that the doctor on the list in this forum, Guyla keliger?How long ago did you have the operation? Did you get rid of symptoms?
Yes - that is him. I had a tonsillectomy/transoral styloidectomy in September at Karolinska Universitetssjukhus in Stockholm, but it did not resolve my symptoms because only the tips of the bones were removed and my problems come from vascular compression near the skull. I’m now waiting for an external/transcervical styloidectomy in Linköping, which should happen in the next couple weeks.
It’s good that getting the CT looked at again did confirm that the styloid is elongated, well done for pushing to get it looked at again! As coldbear suggests if you can get a copy that could be helpful.
I hope that you’re able to get some treatment from the doctor that he suggests…But hopefully you’ll see on here that plenty of others struggle to get treatment or be taken seriously by doctors, & that you’ll feel less alone…
If neither of the doctors work out, see if there are any skull base surgeons/ otolaryngologists in your area, or head and neck cancer surgeons who might be willing to help.
Good luck!
Just wanted to send you some support, especially in the light of your narrow minded doctor who needs to do their research!
It took me years to get answers to some of my symptoms so you are already on the right track. Try not to feel too sad and disheartened. It can be a lonely journey but you’ve made a really good start finding this site and I’m sure you’ll find the answers somewhere - just keep going, All the best
PS Definitely get a copy of your CT scan - sometimes you have to persist and cajole - whatever works. There’s free software online for you to view it yourself too.
Give your doctor my information and I’ll give him a huge piece of my mind! I will tell him that my surgery helped every single one of my symptoms whether he believes in it or not. This really pisses me off! Making people suffer when he could refer you to somebody that actually knows what they’re talking about! Grrrrrrr!
@noelleinaz , I had just recently posted about a doctor that I went to go see in past few months, when I inquired about my styloids he said that styloid and /or eagles syndrome was “old school” and his were long and they didn’t hurt him. I told him I am learning information from a website online he said that it was a California-based organization that wanted you to fly out and do thousands of dollars worth of dental work?? . there are some real winners out there and I seem to seek them out. @Marre411 I’m wishing you the best of luck in finding a good doctor to help you soon.
. But my question now is how do I proceed and get help? Is there anyone from Sweden in this forum?
. I live in Småland. Thanks for the tip about a doctor in Linköping. Is that the doctor on the list in this forum, Guyla keliger?How long ago did you have the operation? Did you get rid of symptoms?
. there are some real winners out there and I seem to seek them out.