Quantcast

Eagle Syndrome - Online Support Group

Newly diagnosed with ES


#1

Hello Everyone. So, I have been struggling for the last year with difficulty swallowing. I was sent to gastro doctors and did the barriun swallow test and all they could find was a hernia. I felt like I was going crazy because I kept saying my throat a d they would blame it on acid reflex. Well in March of this year I went to the doctor for what I thought was strep. She didn’t swab me just said I can still get strep without having my tonsils. I took the meds and didn’t get much relief. I went back the first week of May with the same pain on one side and what looked like strep. So my doctor swabbed. The test came back negative so she sent me to the ENT that day to get an abcess drained. Saw the ent, he ordered me a CT and wouldnt touch this abcess like thing in my throat, unless he was for sure it was a peritonsillar abcess ( but I don’t have tonsils!). Anyways, CT showed eagles clear as day, so I’m taking muscle relaxers ( I hate and refuse to take) and steriods rounds which make my heart race. I did my MRI this past week and it came back abnormal on the left side ( painful side with the reoccurring random lump). So, I found this site and I am excited because I have no clue what to do! I see a specialist in 2 weeks that is said to be more knowledgeable of eagles and this lump. I’m so worried because I have my CT and MRI but my doctor is being so vague! I am anxious about what is to come. We just sold our home and we are supposed to be moving out of state and the kiddos are about to be out of school.

Anyone have a random mass like thing that popped up in your mouth that had ulcerations on it? Black and White circles and so very painful. Steriods help it go down but it comes right back! Wondering if this is eagles related orrr something else going on. Willing to post scans for insight.


#2

Firstly, we’re not doctors on here, nor experts, just people who’ve had ES ourselves & read up a bit on it, so can’t really give you medical advice…
Some members have had tonsil stones (tonsilloliths), but you say that you’ve not got tonsils? And the styloid process, if it’s growing at a certain angle can poke into the back of the mouth/ throat, in the tonsil area. Maybe that’s what’s happened, & it’s caused the mass at the back of your throat?
Hopefully other members can chip in to help you.
Your doctor is probably being vague because they don’t know anything about ES- it’s very rare & a lot of doctors have either never heard of it, or have very ignorant ideas…
There’s lots of info about ES in the Newbies Guide section, so read up as much as you can, so you’re informed when you see the doctor, & can have some questions ready.
It sounds like the timing is awful for you, so thinking of you… :hugs:


#3

There is a US Doctors’ List which lists doctors by state. These doctors have all done surgery for at least one person on this forum. You should take a look at it. Put “Latest Doctors’ List 2017” into the search box that comes up when you click on the magnifying glass at the top right of the page & you will see the list.

Dr. Samji in California & Dr. Cognetti in Pennsylvania are the 2 most experienced ES doctors in the US. Both will do telephone consults for a fee once you’ve sent your CT results to them. You might want to choose someone w/ a lot of experience to discuss your situation with. Dr. Samji did both of my surgeries & I can’t recommend him highly enough. He is a fantastic surgeon!

:blush: