I don't understand. Two weeks after telling me I had ES, my doctors office called today and says now I don't?? It doesn't make sense. I'm so confused. Why would they change two weeks later? I have most every symptom. I was finally like...finally there is a reason for my feeling like this and now they say it's just my tonsils? So confused.....
So sorry you are getting mixed messages from your doctor. Have you had a CT scan with or without contrast? If so, you should ask to see it. Several people from this forum have posted pictures of their CT scans. Click on the Photos link at the top of the page & take a peak at the photos posted. If you had a scan done & have access to it, you can compare yours to those on this site & see what you think. If you believe you have ES then it's time to be pro-active and find a doctor who will work with you to resolve it. The Doctor's List at the top of the page has recently been updated, I believe. It's a fantastic resource.
I hope you're able to find the help you need ASAP!!
I had the same experience, although a year apart- I was diagnosed with ES, a more junior doctor spotted the elongated styloids on a panoramic x-ray, and called in the consultant. He then felt my styloids externally in my neck- v. painful!! And agreed with the diagnosis. He wasn't prepared to operate and at the time I felt things were bearable, so was happy to leave it. I saw him for another routine appt. a year later, by which time things were a lot worse- and he then said, 'oh, I'm not sure it is ES'!! (he actually called it 'this so-called Eagles Syndrome'- even worse! Luckily I had done my research on here, knew my symptoms were ES, and had found on here another doctor to be referred to, so I was confident enough to ask to be referred to a more knowledgeable doctor. And 6 months later had surgery. Sorry this is long, but I hope that you'll realise you're not alone- a lot of members have had similar experiences. If he was confident enough to diagnose you with ES a few weeks ago, he must have seen something in your scans or symptoms, so hold on to that- maybe he's had second thoughts about performing the surgery and wants to fob you off!!
You could go through with the tonsillectomy, to prove a point that it is more than that causing your symptoms, and hope that after that he will do the styloids- a lot of extra pain though- or as Isaiah says, get your CT report, and if possible the report of the consultation when he diagnosed you with ES, and look for another doctor to help you. Don't give up; it won't go away, you have to fight for yourself. Read up as much as you can to give you confidence, and be the best advocate for yourself that you can be. Good luck!
I am so sorry. It’s such a horrible sinking despair, like the sand being swept out from under you.
Like the fireman telling you they’re not actually going to put out your house fire, because it’s only the kitchen, and they only do HOUSE fires. It’s bs.
Did they have any other ideas for you? What to do next? It is kind of a stretch of faith in humanity, but maybe they found something else that could be the cause of your pain an issues.
Had my doc cancel this morning, 2 days before surgery. He was even telling me about all the nerve symptoms,weirdness, etc my spikes could be causing.
Had a few ultrasounds (which he didn’t expect to capture any kind of compression and warned me they may not) Not capture active compression. Decided he was not enthusiastic and did not want to discuss his previous nerve statements.
The First thing I did when I got off the phone was to call around for another doctor.
Don’t let someone else’s lack of professionalism stand in the way of your life.
What I’ve been able to pick out of this mornings spotty convo was the doc didn’t feel confident getting close to cranial nerves taking out the styloid. Admitted lack of experience Maybe your doc talked to some other doc who wasn’t and knowledgable, or who was on the bandwagon of ES is the new psychosomatic complainer syndrome, and their peepee shrunk a little. Maybe they consulted their insurance protocol and they don’t believe in it. They might jut be soulless, unfeeling pod people. Who knows.
You don’t want these kinda surgeons digging around in there anyway.
I know it’s the hardest, as feels like the most played out thing, but maybe you dodged a bullet Bro.
Keep kicking.
Thanks for the replies. To answer some questions, yes I had a ct with contrast. I see the doc for pre-op appt Tues and he is supposed to bring a copy of my scans for me so I will try to put them up and compare. This doc is actually in the office with one of the docs on the list so I'm just really confused. I'll look myself and maybe you all can put your two cents in as well. Snapple of Discord....your peepee comment made me bust out loud laughing!!! Thanks!! Sure needed that this morning!! I will update after Tuesday appt. You all sure make me feel less crazy. Thank you so very much!!
Mustangmom, I completely agree with Jules and Snapple of Discord. Snapple of Discord, your comment made me laugh out loud too. The pod people one was pretty funny too.
But Mustangmom, like Jules said, you can let them do the tonsil surgery to prove a point, but then you have to find someone to do another surgery in the same area and it's often much harder to find that. The doctors worry about scar tissue in the area. I know it's hard to consider travelling out of state, but a lot of us find that's what we have to do. Or can you see the other doctor who has had Eagles experience?
One of the forum members conducted a survey of forum members at the time and the results showed a wide range of reported symptoms. Maybe you could print it out and show the doctor. http://forum.livingwitheagle.org/forum/topics/results-eagle-syndrome-survey There is also information in the ES Information tab about symptoms.
But I also strongly agree that if the particular doctor is not familiar and is not comfortable operating for Eagles, you would most likely be better off finding someone more experienced operating in that area and preferably with actual Eagles cases also.