Dr. said I do not have Eagle although he said all the symptoms are spot-on, due to regular ct scan, help!

General
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Hi everybody!

Ok, so saw my ENT today, who last time had suggested ES (this is the fourth doctor to suggest it, but nobody has really spent any "time" talking to me about it, more in a conversational "I had a thought" kind of way). He reviewed the last CT scan I had done, and he came back and said that I definitely do not have ES, because the CT shows the styloid process as normal in length, he even said that "they are short, actually." I said, "ok, no extra length, but what about calcification," and he said that the CT would show the calcification, and I don't have that either, that the CT scan was very clear. He put my fingers way in my mouth, but that tube up my nose to look all around, felt around, and felt nothing. He has referred me to a neurologist....he's stuck with knowing what's going on, since he is convinced it's not ES.

Now, where I get confused is the countless things I've read on this site about CT scans not being so good for showing this, and that a 3d ct scan or a panorex is the way to go. I mentioned this to him but he was adamant that this regular ct would show it. So, what do you guys think?

I am concerned over the whole thing, sway back and forth for a couple of reasons:

1 - I'd like to know what's going on. I get concerned over reading things like the bone could press on the carotid artery.

2- Since October, I have had two ct scans, plus a pet scan/ct scan, and a full set of dental xrays. This seems like a lot of radiation...and I want to be healthy and start a family soon.

I think I'm jumping the gun with all of this detail, I know, but I'd just love to hear your thoughts on what you think- in reference to what the ENT said, and if there good good reasons to get more radiation, outside of being in pain...

thanks so much guys.

Julie

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Hi Julie. Why don’t you get one of those panoramic scan like the one Deleone posted recently. I would this that is a lot less radiation. I have read up that CT scan give so much radiation compared to xrays. Xrays are nothing compared to CT. I would print that picture out and see the next specialist and ask for an exact panoramic scan like your print out. But do a google search and check how much radiation is in the panoramic scan. While you are the check how much dosage is CT compared to xrays… Etc…

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did he give you a CT WITH contrast? The best route for diagnosing eagles is a CT with Contrast, or even better a 3d ct scan...

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Also with all due respect to your doctor, its your money your spending for these expensive tests, he could at least give you a 3d ct

LivelyCadaver said:

did he give you a CT WITH contrast? The best route for diagnosing eagles is a CT with Contrast, or even better a 3d ct scan...

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I totally agree. I just got back from Dr. Cognetti's office. I had not had my cat-scan yet and he said make sure you get it with contrast. He looked at my panoramic and he said that he could not determine ES from a panoramic. Need Cat scan with contrast. He personally said that it's great to have 3-d but the more important part is contrast.

I live locally to Dr. Cognetti's office so I will get it done and go back for another appointment.

Also, he mentioned that the length of the styloid isn't the determining factor, it is the symptoms; however, he also said that the true test is if you have surgery and your symptoms are relieved, then that's what you have.

One more point, he determines intra-oral vs. extra-oral by the position of the styloid. Hope that helps.

JCW


LivelyCadaver said:

Also with all due respect to your doctor, its your money your spending for these expensive tests, he could at least give you a 3d ct

LivelyCadaver said:

did he give you a CT WITH contrast? The best route for diagnosing eagles is a CT with Contrast, or even better a 3d ct scan...

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I agree a CT with contrast.
I have Vascular Eagle syndrome. My styloids are not long but they are at an bad angle so they point backward and compress the internal jugular vein. My symptoms are worse when I look down.
A CT scan with c

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A regular CT scan with contrast did not show the compression. I had a CT Venogram which is a CT scan with contrast and they time the scan so they can see the veins and the arteries.
Also mine is positional so standing up I to not have symptoms. Also this makes imaging difficult because with my head in s

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Head in some positions does not show the compression.

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A regular scan wuill not reveal ES. I had three different scans, and the only way I was diagnosed was with a very specific one they did while I was laying face down, with my mouth open. Puting tubes down your nose and/or touching inside will not reveal anything if the styloid is not long enough... Find another doctor. This one is not invested enough in you.

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Hi" I agree with everyone. You have already been exposed to alot of radiation already!
Yes a 3 D w/ contrast would have been more better. You could get a copy of your scans. The true film’s not a disc and ask another radiologist to re dictate them. Thats what I had to do with my mother’s. My mother and my sister all 3 of us have it! And when they did my surgery’ my styloid was alot longer than the 3d cat scan shown. So my introral surgery took way longer! Good luck! If you dont have eagles it could be glossinpharyngeial neuralgia" very simular symptoms as E.S or you can have both together. Like I do. But find yourself a good ent/ baseskull surgeon and they’ll get to the bottom of this. Theese kinda of surgeons are far and few" God Bless♥

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A good single x-ray should do it-ask for a mastoid series-that showed mine clearly. My CT's w/o contrast showed it fine-I thought the contrast is to show tissue with blood flow? I'd go with a panorex-it's one, its quick, cheap can be reshot right there. In 1990-1 panorex in August and then surgery in November. It is not the type of imaging it is the doctor looking to not do the surgery. You can see the styloid in every one of these methods--how beautiful it is, is irrelevant unless we want to frame it.

I've had too many CT to prove I was right in what was causing my pain and a good doc. should know the right method of imaging to see what he needs to see-I agree, get a new doctor.

I have learned to doubt the efficacy of the CT-mine showed mine was .9cm long when it was 3cm long-my doctor admitted that a CT is a crude method as it is made by images put together by a computer-my 15 years of x-rays showed it better and the actual length.

so it might not be dense enough to show up. The contrast one I had did show the compression of the carotid artery.

I go back to my usual gripe--I've never spent so much time trying to convince a doctor I have what it turned out I had.

for example-I had a CT with contrast for a kidney stone on a Friday-Monday got diagnosed with bladder cancer-Friday had the tumor removed-one week. I'd forgotten medicine can actually work quickly. It seems that because ES doesn't kill us we got loads of time to beg and suffer.

no better scan will convince a doctor to do what he obviously doesn't want to do. You need to find an eager one--not a scalpel junky just one that has experience and is will to remove what is there--mine was even though the CT showed it to be .9cm as he said any length could cause a problem but it turned out to be the 3cm and he was surprised.

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Julie, I see we have other members from the UK. Why don't you send them a friend request, so you can ask them about doctor recommendations? http://forum.livingwitheagle.org/profiles/members/

There are some other cranial pain conditions that are not Eagle: Trigeminal Neuralgia and Glossopharyngeal Neuralgia, for instance. We have communities for both of those. You are welcome to join them to learn more.

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It looks like you are not alone with this trouble, Julie: http://www.dailymail.co.uk/health/article-2347329/Father-forced-Google-symptoms-150-GP-appointments-failed-correctly-diagnose-rare-throat-syndrome.html

Perhaps you can contact his doctor at Salford Royal...