Hi everyone. I’m a Norwegian living in Spain. I’ve been a member here for some time, but have not been very active yet. I’ve read a lot of the discussions, and it’s good to see I’m not alone with all these weird and painful symptoms. So sorry anyone has to go through this, though! I’ve had symptoms for 8 years, but still have no diagnosis. So, far anxiety and muscle tensions are the closest I’ve got to a diagnosis, and I’m pretty sure those are not correct! For me everything started 6 months after giving birth to my oldest daughter. I was told it was an ear infection and got a prescription for antibiotics. I remember the ears “clicking” and a full feeling on the left side of my throat/chest. And I had pain in the area of the tonsils and weird things going on in my face/jaw/neck (burning/prickling sensations). Well, it got a little better, but I always had the sensation of having something stuck in my throat (in the area of the base of the tounge, jaw, under the ear) and pricklings/pain in the neck area that would come and go. I’ve had done all sorts of tests: throat scopes, x-rays, cts (4 times), MRI’s, and ultrasounds. I’ve been to all sorts of doctors and to many. Everything comes back normal, but I certainly don’t feel nomal. The past two years have been worse. I now have a feeling of having something boney in my throat/neck that seems to almost bend and break every time I swollow, cervical pain, feel dizzy at times, pain(like pricking a needle) in throat/jaw/ear that come and go, weird things/sounds going on in the ear, heart palpations and a feeling of not being able to breath well at times (which is what scares me the most) and a general feeling of being unwell. Some periods/days are better than others… Used to be only on the left side, but also start to get symptoms on the right side now. I did ask for a ct w/contrast of the styloids after reading info. in here. They refused to do it with contrast (not necessary according to radiologist), and the doctor couldn’t see anything abnormal about the results. I was told my left styloid is 32 mm and right 38 mm. From what I understand that is a little too long? I have recently found an expert on ES in Barcelona so I hope to go see him soon (I live in the Canary Islands). I would really like to find out what is causing this pain - if it could be ES- and if anything can be done! Sorry about making this so long…
It certainly sounds like ES! I hope you are able to see the right specialist. Hang in there and don’t give up. I hope you are able to find relief soon. I am having surgery Nov 3rd to remove my left styloid and possibly the ligament as well. I too have symptoms on the other side and am anxious to know if it’s too long as well. Also, radiologists don’t always find them or report back on them. The report on my cervical xray stated basically everything looked good and I picked up digital copies out of curiosity and saw my left one was very long myself. How anyone could miss it is beyond me. The radiologist report is not always read correctly unfortunately.
Thank you, Heather B! I also hope to find the right specialist - not too many of them in Spain. I was actually considering trying to see a specialist in the US since I’m going to Phoenix, Arizona for a wedding/vacation tomorrow and the next two weeks. But, I will try the one I found in Barcelona first since it’s closer to home… The last doctor I saw basically told me he didn’t think it was ES since the styloids were not long enough and my symptoms were not typical those of ES… That is great that you’ll have surgery so soon! I hope that will give relief of all of your pain. Good luck!
There was a survey that a number of us filled out about a year ago where we listed our symptoms. It might not be a bad idea to print that out to show a doctor that all kinds of symptoms can come from Eagles. I know that survey was just discussed a couple months ago, so I don't think it should be too hard to find.