It is driving me nuts and I get a little bit scared about the styloid pressing on my tonsil area. It hurts a lot. Become worse since a medical examination about a month ago.
I try to live my daily live but it is really frustrating having this non-stop pain. I will contact a doctor in the US to help me because I can not get help in Sweden.
If any swedish Doctor read this - please contact me if you think you can help me or know one who can!
I am happy finally being diagnosed with Eagles yeah!!!! But no one wants to help me, its to dangerous they think. Been to one of the biggest University Hospitals in Sweden and they just told me they did not operate the styloid.
I wish everyone in this community a pain-free sunny weekend :)
Hey there, i am really happy that you've found out whats wrong with you. All i can say is hang in there and don't give up trying to find a ENT who can help you. I will pray and hope you find someone.
How much of a reality would it be to come to the US for your operation? I suppose you'd need to meet with a doc here and get scans, then schedule the surgery...all while paying for a place to stay, plus the airline fees. I am surprised that Sweden doesn't appear to have surgeons who do the operation. I hope your solution comes easily, and soon!
It would be a long shot, but I wonder if a US expert could be flown out there to teach the operation to the Swedish medical community, and also resolve your Eagle's at that time. I think you'd have to convince the Swedish hospital that flying someone out would be a wise investment for them.
One more thought.... The docs I am working with that do the styloid removal are docs who actually specialize in tumor removal in that area. You won't find anything on their qualifications or specialties or google searches about Eagle syndrome or anything specifically mentioning that surgeon as removing styloids.
You may want to ask who the brain tumor removal surgeons are at the facilities in Sweden. I may be wrong, but these surgeons get the styloids out as part of the procedure to get to their cranial tumors. You may want to try finding those doctors, then asking about the surgery. Someone there has to be removing cranial tumors, right?
When I look for 'craniofacial surgeon sweden' in Google, I get a few results. I am sure you Googled your fingers off, but here is an example of a name/facility that came up as a possibility; maybe the facility is a familiar one to you and one to check? A professor or university hospital might have a lot of leads for you.
I will try to get in contakt with these craniofacial surgeons. But in Sweden you can't just make an appointment - you have to get a referral from another doctor first.
I will try to get a referral but it can be difficult ..
I got a moucous retention cyst inside my hard palate. Did a ct scan and biopsies of the cyst and two glands. Nothing serious - they fpund only benign tissue - thanks god!!! The past week I got ANOTHER lump in my mouth - I think it is a retention cyst too ....:( . I also get checked for other deseases becaus I got multiple problems since march, lumps under my skin and stomach ache ....
Why are all this things happens too me all the time?!?!
I also see a new ENT on august 26 for the lumps in my mouth and I will try to speak with him about Eagles.
My neck is very sore on the left side and my throat hurts a lot on the right where the Styloid is palpable in the tonsillar fossa. It sucks....
I am taking paracetamol with codein against the pain but it don't take away more than 5-10 % of the pain. Should I try other pain killers? I am allergic to aspirin/acetylsalicylic acid.