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Eagle Syndrome - Online Support Group

New ent visit

#1

Hi
There I finally seen an Ent today.And he is not real experienced with eagles.Has only done one surgery and kept telling me if I could find someone more experienced to please do so.
I asked about a rotational ct with contrast to check arteries for compression due to the serious symptoms I’ve been having.Including trip in ambulance,
He said he doubted if radiology would even understand or know how to do this test.
So my question is how did others find their compression. ALSO he said he would sign me up for surgery but wanted me to be fully aware that it may not help .And said it would be same day surgery.
I have complete anxiety for the lack of experience as well as the drs idea of this is something we can just live with ,
I cant even turn my neck, or drive in bed most days.
He just kept saying what if you do the surgery and it’s something else .I’m pretty much disabled they dont give you pain management .Why would anyone want to keep living life like this.
I live in Washington state. Hear is one side and they both are this long.
Advice please

#2

Those are some serious styloids! My immediate suggestion would be to find a surgeon that feels more comfortable with the surgery. Is anyone of the Dr.'s list close to you?

#3

The only one listed in Washington. I was told doesnt do the surgery anymore

#4

The styloid process is obviously elongated from your pic, looks like there could be calcification of the ligament right to the hyoid bone. So I guess this doctor was happy with an Eagle’s diagnosis?
A CT with contrast is a pretty standard test, don’t worry about the rotational bit, just make sure it’s of the head & neck & that it’s evaluated for compression of blood vessels.
Although if you’re not confident in this doctor’s ability- & it doesn’t sound as if he is either!- I would definitely see if it’s possible to travel elsewhere for surgery. The experienced doctors will do phone consults, you can send the info to them. Apparently Dr Samji doesn’t need a contrast CT, not sure about the others, if it were possible for you to see one of these doctors it might save you getting a CT done?
I’m UK, so not sure about the whole US system, but there have been lots of discussions about what’s needed for a referral, you can use the search function for that, & hopefully others will chip in too.
But I would be very wary of having surgery with this doctor if he’s not confident, as you’ll likely need the styloid shortened & calcified ligament removed.
BTW, who was the doctor not doing surgery any more? We can put a note on the list.
Good luck…

#5

Hi Henelee,
Since your calcification is so extensive, I would be VERY WARY of having a doctor w/ so little experience do the surgery. You most likely will benefit the most from having your styloids & ligaments removed from skull base to hyoid bone. Just shortening what’s there may cause more problems or not resolve any of your current symptoms. Based on the comment made by your current ENT that he’s skeptical surgery will help, I would not have him do my surgery if it was me.
Many doctors do ES surgery as outpatient i.e. you go home the same day so that aspect of his protocol is normal.
If you elect to get a CT w/ contrast, if you hold your head in the position that makes your vascular symptoms the worst during the scan, the compression should be obvious though it will likely show up even if you just lie flat as Jules noted.
I recommended once before & will do so again - please consider going to California to have Dr Samji do your surgery. There is a much better chance of a good outcome for you that way. You will need the help of a family member or friend but it would be so awesome for you to be able to no longer be bedridden.
:heart:

#6

Hello Henelee,

Sounds like you are in a tough spot for sure! I agree with everyone that it would be best to find another surgeon. Just FYI my CT venogram only showed mild internal jugular compression but when I had a femoral approach venogram with US and pressure measurement it showed 75% stenosis in the internal jugular vein…this was not clear on the CTV. I do also recommend asking to position yourself in a provocative position for the test for the best exam. Keep up the good fight, you are not alone! Wishing you a fast second opinion and testing SOOOOON!