Julie I also can barely feel my styloid in my tonsil area, but I can feel it on the side of my neck where a lot of people have their surgery scar, perhaps look at some of the pictures where an extraoral surgery was done and see if you can feel it on the outside, or if you have a significant other, feel their neck, you will quickly notice you have "extra pieces" as my girlfriend so lovingly says lol. Happy valentines day eagles survivors.....and we are survivors.
Julie:
So many great recommendations have been made! In my experience in getting the right diagnosis and finding the right surgeon for me, using the right "laser specific" language was the key. Through trial and error, doctor after doctor, one failure after another, test after test, loss after loss - it finally dawned on me like a ton of bricks. I needed to be as clear as possible with these doctors, telling them precisely what was happening. I wrote down a timeline of my symptoms. Then I broke it down into the what, when, where, how and why. What makes the pain worse? When is the pain worse/better? I asked myself every question I could think of in every category so I could gather as much information. Even if it seemed trivial I had to have hope that it could be a huge tip off to a doctor. And the statement, "Sometimes I wake up in the middle of the night choking on my own saliva, swallowing uncontrollably," was the statement that led to my diagnosis.
I also have huge TMJ issues and another one of my issues outside of Eagles is bruxism (teeth grinding). Before I had my left side surgery I used to wake up super exhausted, my mouth and face muscles ached to the point that I couldn't stand it. My night guard would be beat to hell with bite marks. I'm 6 1/2 months out from surgery and had a new night guard made 4 months ago. It barely has any wear and tear on it. My frequency of grinding my teeth has decreased immensely!!! I googled Eagles Syndrome and bruxism and they go hand in hand. Bruxism is at the top of the symptoms list. I thought it was kinda interesting. And it's interesting too because a lot of us here on the Eagle site seem to have TMJ issues too... Dang these styloids grrrr
At any rate :) I hope some of this has helped!! Being as concise in your language seems to help. Lead them into the Eagles diagnosis without letting them think YOU think it's Eagles though. Because most doctors really do not like to be told by their patients what they think the diagnosis is.
Julie:
So many great recommendations have been made! In my experience in getting the right diagnosis and finding the right surgeon for me, using the right "laser specific" language was the key. Through trial and error, doctor after doctor, one failure after another, test after test, loss after loss - it finally dawned on me like a ton of bricks. I needed to be as clear as possible with these doctors, telling them precisely what was happening. I wrote down a timeline of my symptoms. Then I broke it down into the what, when, where, how and why. What makes the pain worse? When is the pain worse/better? I asked myself every question I could think of in every category so I could gather as much information. Even if it seemed trivial I had to have hope that it could be a huge tip off to a doctor. And the statement, "Sometimes I wake up in the middle of the night choking on my own saliva, swallowing uncontrollably," was the statement that led to my diagnosis.
I also have huge TMJ issues and another one of my issues outside of Eagles is bruxism (teeth grinding). Before I had my left side surgery I used to wake up super exhausted, my mouth and face muscles ached to the point that I couldn't stand it. My night guard would be beat to hell with bite marks. I'm 6 1/2 months out from surgery and had a new night guard made 4 months ago. It barely has any wear and tear on it. I googled Eagles Syndrome and bruxism and they go hand in hand. Bruxism is at the top of the symptoms list. I thought it was kinda interesting. And it's interesting too because a lot of us here on the Eagle site seem to have TMJ issues too... Dang these styloids grrrr
At any rate :) I hope some of this has helped!! Being as concise in your language seems to help. Lead them into the Eagles diagnosis without letting them think YOU think it's Eagles though. Because most doctors really do not like to be told by their patients what they think the diagnosis is.
thank you Amy, all really good advice. I'm at the point now where I want a test to see if it's Eagles, since I've had three dr's mention Eagles, but none really do anything about it. I guess the question is, what test do you all think is best, I've had a CT with contrast, which I can ask the ENT to review, but I know the panorex x ray and the 3d ct scan both seem better for diagnosing. I've had a fair amount of radiation since october - two ct scans, an MRI, full set of dental xrays, a PET scan with ct scan as well....oofa
It is exhausting convincing a doctor that you have what you know you have.
An X-ray is best for first time since you can reshoot right there. The CT is what the computer generates. I my case the CT was 2.5 cm short.
Ask for a mastoid series. That was so clear and no question about it. But it still didn't convince any doctor to operate. The pics are great but a willing Doc is the hunt.
I eat night guards. I got one of those clear braces things made-invisaline? its tough and cost less.
trudge on!
Thank you, thatās exactly what Iām going to do, asking for something specific like āmastoid seriesā would be very helpful, I imagine.