How fortunate you are to have such extensive calcification of your styloids & s-h ligaments & not have vascular symptoms. That is truly amazing! You’ll know when the time is right to take care of this surgically. It would be awesome if you just stayed pain free for life, though! It’s something to hope & pray for!!
Mr Axon was wonderful. He’s writing to my GP and I will be helped for my Eagle Syndrome. I feel like I’m dreaming. It’s been such a long road but I’m finally being listened to. Thank you to this group I have got to see the right person. Thank you thank you thank you xxxx
I’m so happy to read that you finally have a proper diagnosis, Adele! Seeing a knowledgeable doctor makes all the difference!
That’s great news! Glad he’ll help you- could be a bit of a wait, but at least you’re on the road now!
Good luck Adele!! so happy you are confident in Mr. Axon and will be thinking of you. Let us know how it all goes
I would just like to give you some more encouragement. My story is very similar to yours and my symptoms also included constant headache/ pains in head, dizziness and passing when turning my head etc. I was undiagnosed for 5 years and was in the care of neurology and saw many many other specialists and had so many scans I must be glowing. I had to give up work and most of the things I enjoyed in my life. I began to have severe problems with my jaw and was referred to the maxillo facial clinic at UHW by my lovely dentist. This prompted me to look on line once more and that is when I found this wonderful forum and found the information I needed to ask them to look for elongated styloid processes on my cone beam ct scan. I was then diagnosed and soon had surgery extra orally, on first the left side, which I felt was the side causing the most pain. My surgeon was brilliant and I felt very safe in his hands, but even he didn’t think that my symptoms could be relieved by the surgery - that is- until he saw that my pain went completely after the surgery. I had my second surgery 6 months later and the dizziness and fainting has all gone! I have my life back and have never felt more healthy or fit!!! I am so pleased that you are now getting somewhere, just hang on in there, there is light at the end of the tunnel. Wishing you all the very best!
Pumpkin, Adele lived in your area for years, so is interested in the hot spot in that area!
Hi all I’ve been so I’ll and they’ve made me go back to work or I would have had to resign. I’ve literally been working sleeping and clearing my house in preparation for my operation for my pelvic gyny stuff on 20th November, I’ve literally had no time to think about writing stuff for Walesonline. I’m going to do it tomorrow though so if anyone would like to give any input or pass in phone numbers for Mark over at Walesonline please feel free to message me. He’s particularly interested in the disease itself and the hotspot in South Wales with 20+ recorded sufferers. I’ll have my Eagle head on all day tomorrow and I will give anyone my phone number or can call anyone who would like to get involved. I think I’ve managed to reply to those who have messaged me now. Xxx
BOY do I understand the position you are in! I just started reading this thread again and I hope after more reading you had a good outcome!