Hey there, MusicGeek!
My recommendation would be that you get your foot in the door at Dr. Samji's w/ your enlarged salivary gland as that sort of thing is also his specialty, & while you're there, address the ES situation (make sure to have scans with you). I was diagnosed w/ ES by another ENT who was practically salivating about getting to do my surgery as he had done a few in the past & my styloids were pretty long. My mother-in-law insisted I get a second opinion & through a series of God guided events, I ended up at Dr. Samji's ofc. When I called to make the appointment I told them I'd been diagnosed w/ ES. They asked me to bring in my scans, but what I had were hard copies like the old time x-rays not a disc or an online version. I ultimately had to call the radiology ofc & have them send the electronic version of my scans to Dr. Samji's ofc. They were done w/o contrast. Like you, I eventually had vascular symptoms. Dr. Samji wisely chose to operate on the styloid that was growing in the most precarious direction first which did relieve much of my vascular symptoms. It was about 3/4 of a year before I had my second surgery & my second styloid was long enough by then that it was impairing the function of my tongue & really stabbing into my throat (not through the skin) but I was choking a lot especially when taking a drink of something like water.
Even though you're having a tough time w/ Dr. Samji's medical assistant (no names mentioned here ;), if you persevere in your quest & get an appointment, it will be well worth your time & the travel expense. It's a great office & for the most part the people who work there are very kind & compassionate.
I am sorry for what you've been put through & do agree that the person you have had contact with could be more considerate & compassionate. She has clearly not had to deal with a problem like ES herself except on the appointment booking end.
I hope this helps!
MusicGeek said:
Hi, I believe I'm the one you mentioned who was told to get the CT scan with contrast.
It was what I was told. But now they have changed their story. I had to wait for the CT scan with contrast because my doctor had me get an MRI with contrast and you aren't supposed to have contrast test closer than 6 weeks apart. So it was done two weeks ago. The radiologist did the test both With and Without contrast. My doctor gave me a call last week and told me to wait before I sent in the discs. He saw something he wanted to look at first. Apparently I have a submandibular salivatory gland that is large (and painful). My ENT hasn't seen anything like it and he said it was probably best that I have Dr. Samji handle it since it's unusual and could be caused by the possible Eagle Syndrome that still needs to be officially diagnosed. I did everything the Dr. Samji's office asked. They also told me to talk with my insurance company and the insurance gave the go ahead for to see Dr. Samji. I called Dr. Samji's office and in the phone message I was forwarded to the assistant or nurse recommended an email. I wrote and I now have a different directive - copy paste below:
>So the only 100% needed item is a CT neck NON-contrast styloid protocol which specifically measures the length of the left and right styloid bone. This is the only way to guarantee a diagnosis of "eagles syndrome" in our office. Once that scan is received with the report that states the measurements of the styloids then we book a new patient visit to discuss options.Hope this helps,>So to be clear - I received two separate and completely different instructions. I am currently getting my response letter edited by a medical professional friend. I then might have someone else who doesn't like me too much edit it LOL My family and friends are very angry right now. They all know the pain I'm in. I'm a professional musician and had my "last gig" two weeks ago to a packed house.Last week I called the Doctor office in Phoenix and the new nurse he had was..... I asked how many time the doctor had performed Eagle Syndrome surgeries and her response was "lots of them". I asked kindly if there was a way to send in a CT scan and she told me I had to come in as a new patient. I explained that I was in Washington State and that I'd like to make sure I'm not wasting either of our times and she told me "that's your decisiion". I asked If she meant by "lots of them" 5?, 10?, 50? and then she yelled at me and said "Like I told you before - Lots of them, I'll have to ask on Monday and I'll call you back". -She didn't call back.So getting a calloused response from Dr. Samji's office of "hope that helps" after I did what they asked is beyond disappointment. I'm flared up by the hard cry.Bottom line there should be some sort of "protocol" from the office since a LOT of time goes by while fulfilling what they requested. Also there needs to be some training for the lucky ones who aren't sick to have some -!*&@#%$%&*! empathy. sheesh! (sorry I resorted to cartoon swearing)I'll pray for your surgery Bella. I believe you have made good decisions and deserve and should ask for help from family to have a peaceful rest before surgery.