Wondering if anyone has some advice on what to do after CT report says nothing? I’m so upset, frustrated and not sure where to turn for second opinion… Any ideas on what I should do or be asking for? Much appreciated
I have read those very words a few times on my CT Scans. From what I have been able to gather, that term is used in a different sense than us by Radiologists to mean "not out of the ordinary". Of course it is subject to the skill of both the Radiology technician performing the scan and the Radiologist who interprets it (what constitutes normal and abnormal for each individual?), not to mention their familiarity with rare conditions. Keep in mind as well, that the kind of socialized health care that we commonwealth nations seem to enjoy, always opt for the least expensive testing on the first go around. The least expensive types of CT scans don't always show the kind of detail needed to diagnose Eagle Syndrome. There is also the possibility that the Radiologist was not as competent as one would expect. There are documented cases around the globe of incorrect Radiology reports. We recently had one in here Canada regarding Mammograms that were wrongly labelled as "Cancer Free".
There is every chance that the elongated styloid process did show up on the scan, but was dismissed as "not important" because they had no clue. In my case, the radiology report noted the elongated styloids with the suggestion of possible Eagle's Syndrome, but when my family doctor read the report, he had to look up Eagle Syndrome on his phone. He simple said "Well, that's interesting", then shook my hand and wished me a good day. He hasn't brought it up in over a year.
If your symptoms are a result of a calcified stylohyoid ligament as opposed to an ossified elongation of the styloid process, then it might not even show up on a CT scan. X-rays appear to show calcification better than CT Scans.
I pursued it and tried a different family physician (who also happened to be a surgeon). He understood the implications of ES and referred me to a specialist who ordered a better Ct scan. Although the specialist did diagnose me with ES, he noted that the elongated styloid processes were not touching any vascular structures and therefore I was not in any immediate danger, so surgery was not recommended. It occurs to me that the scan was taken with my head centered and still, which does not take into account if I should twist my head to either side. That's the price of "free" health care!
My advice is to try another doctor, one with more experience. If your health care system works anything like ours, then only a specialist can order certain CT scans, but you can't see a specialist without a referral from your family doctor. In another cruel twist, family doctors are not allowed to view or interpret scans and films (X-rays), they can only use the radiology report to determine how they proceed, hence the need for a competent radiologist. You can also determine the type of CT scan that was performed and compare it with the types recommended on this site
You might also try talking to a radiology technician at one of the labs. They just may be able to give you some insight as to your next step. That's how I found out about X-rays being better for showing calcification than CT scans are. I approached them in frustration, because in my region, patients are not allowed to communicate directly with radiologists and luckily, they were sympathetic enough to talk with me.
Good luck and persevere.
I agree with Red Pill…"it is ALL in the eye of the beholder"
You could have 5 different Drs look at the same image and there would be 5 different impressions. It is very frustrating that we get shewed away while we suffer with symptoms with no relief from the medical field. Don’t give up, it was a TMJ dentist that had a 3D CT SCAN that did my images showed my styloids…and NOT any of the many medical/specialists Drs I saw.
Thank you Amy and Red Pill. I will keep perusing doctors until I get answers, what’s more frustrating is I pay for private health insurance and expect better health care/options but no such luck. It also doesnot help that I live in a rural area where the equipment is antiquated. I chose not to give up, I will trudge away until I have answers. I will speak with my orthodontist too, she may be able to help. Thank you again.
Soo sorry to hear you are suffering and have no answers yet, i can feel the frustration 100%. How i got diagnosed was when i asked my GP for a 3D CT Scan, not a regular one. Then he wrote on the referral to specifically look for eagle syndrome.
Then by surprise i found the answer finally after all those years of suffering. You should definately ask your GP to make a referral to see Dr. Roy Nicholson. He has experience dealing with it as he knew straight away looking at my scans.
He also said he's done the operation around 10 times, so it's great to have someone who is experienced. Let us know how you go asking for a 3D CT Scan. Keep us posted.
The person reading the scan has to be aware of Eagles, otherwise they can easily overlook it. They generally have to be told to evaluate for calcified and/or elongated styloid. Also, if you can't get a 3D scan, it should at least be a CT scan with contrast.
Hi there, Im wondering if anyone can tell me if the 3d ct is the same thing as a cone scan.
Also, RedPill, you said that the reports showed that nothing was pressing on the vascular area, do you know if you could see this in an xray or just a ct scan?Iam four weeks pregnant and can tolerate the pain for nine months, but when you write abou t it pressing on the vascular areas, I get really nervous.
My Ct scan report had no findings as well but two experienced ENT doctors absolutely agreed I had bilateral Eagles although neither thought the symptoms I had were related I had to see all kinds of specialists to prove I had no other problems before I could convince the doctor to try now even things I did not realize were related are better. Educate yourself here and you will know!
Thanks to everyone who has replied. I am amazed at the amount of info you guys are giving, we are all lucky to have found this site!
Julie9536, I’m 11 weeks pregnant and I’m just hoping I can cope through the morning sickness and the pain, it’s tough but I have no other way!
Take care everyone and I’ll keep you updated
Hey Gracious, any referral made yet for the scan?
Hi KenD, I have an appointment with Dr Nicholson next week the 15th. Unfortunately I live in the Country so no 3d technology where I’m from I have to travel 600kms! Sux but if I get help and answers I don’t mind!
Good luck for your surgery tomorrow, I am positive it will go well! Please let us know won’t you? Also does Dr Nicholson have a nice manner or straight to the point?
I hope the trip you make for the scan will be worthwhile :).
I unfortunately don't have good news for the surgery. They delayed it because Roy was needed to do some cancer surgeries. They said they will let me know.
If it is any consolation at all when I was pregnant once I was over the morning sickness I actually started to feel better than I had ever felt in my life! A lot of my Eagles symptoms I attributed to allergies and sinus problems I had been to any number of specialists before pregnancy and they all put me down as a hypochondriac. Or gave me a minor diagnosis as I aged and had children I currently have 4, ages 8-17, I just began to think this was how my body was and I needed to live as long as I could for my family but for myself I would not have cried is I got a terminal cancer diagnosis. I wanted to live only long enough to see my children grow up. Please do not interpret this as suicidal but I am guessing you are a natural eagle as I am not classic and no one knows of this disease! It does appear the newer doctors are more interested so try to go to a younger and brilliant ENT skull based surgeon. After all of this I will tell you my theory as to why I never felt better than when pregnant. I know as you progress in your pregnancy your body makes more blood I believe it is an extra pint and this gives your body the ability to override the carotid suppression better you get more oxygen to all parts of your body. My husband said I was never happier or more energetic than when I was pregnant. On top of that and I don’t know if this is your first but the maternal hormones during and after pregnancy - especially after make that precious baby your sole focus and you could care less about anything else. As I have aged my symptoms have become progressively worse I had become a shell of myself. 6 weeks post op for left side and 1 week for right I am a new person I feel like a teen again. I can deal with acute pain but the day to day torture of Eagles is too much! Also I previously posted that my CT was “unremarkable” according to the radiology report and the Carotid sheath was intact. The problem being if you have a bone where it is not supposed to be and especially in your throat interfering at different times with varying nerves and arteries it is going to cause problems! I would guess many of them would change depending on posture and neck position etc.
Gracious - My comment here is based on the assumption your CT scan was a 3D. As patients we don't always or automatically get copies of the results of these tests and depend on the physicians involved to interpret. I went to an ENT specifically to explore the possibility of ES and so he ordered a 3d CT scan with note that it was to explore my unexplained ear pain. The radiologist's report made mention of minor sinus swelling and noted all was normal in my ears. It did not even mention the styloid processes. I asked for a disk of the scan from the radiology department and when I played it on my computer was stunned to see what looked to me like really long processes in the images. I asked the ENT to request the radiologist append his report with specific measurements of the styloid processes. The addendum identified their length at 42 mm and 38 mm - certainly "remarkable" but he would not have made note had I not asked specifically. Depending on the actual content of the radiologist's report, you might consider asking the ordering physician to request a specific measurement of the styloid processes if perhaps it was not a focus of the radiologist's report. You paid for the scan and it is reasonable to ask for a specific measurement...which you need anyway to either confirm or eliminate ES. Hope this helps.
Thank you Alaska Eagle, and all who have replied. My scan was not 3d just a normal CT with contrast which I believe is ok too. You are absolouy right we pay for the scans so why then should we not demand answers!?! I always feel like I’m not taken seriously and have to remind myself that I am the one in pain not them, I guess no one can really appreciate what one goes through unless they have walked on ones shoes. Doctors should be understanding maybe I can hope
I will soon have an appointment with a specialist who knows about eagles so I pray this will help.
Thanks again everyone, I am blessed to have found this site and such great people.
Hey Gracious, just checking to see when is your date with Dr.Roy? Hopefully it's not a long wait for you, took me over a month to see him when i made an appointment.
Just wanted to add something to re-enforce the idea that there are many factors to a scan without "results". While pursuing the possibility of getting a **Cone Beam Scan today, one of the radiology techs told me that a standard CT scanner in most hospitals/labs differs from a Cone Beam Scanner in that they have higher settings, to penetrate further (and can scan a larger area). These higher settings often burn out the images of lighter density tissue/bone/calcification, so that they will not show up on the final scan. She also said that the settings can easily be adjusted to the same levels as a CBCT (Cone Beam CT). IT ALL DEPENDS ON WHAT THE DOCTORS ORDERED AND ON THE SKILL AND JUDGEMENT OF THE TECHNICIAN ADJUSTING THE SETTINGS.
Since this concept seems pretty basic (Radiology 101), shouldn't all parties involved (the technician, the radiologist and the physician) be aware that just because it doesn't show up on the scan, it doesn't mean it isn't there?
Plus, since the lower setting gives off lower amounts of radiation, a follow up scan may not be as dangerous as they are telling us. If we accept the premise that some of us have ES (or whatever you want to call it : Styloid Ligament Syndrome?) that is caused by calcification rather than ossification, then it stands to reason that the lower settings on the CT scan should be the starting point for a diagnosis. Even ossified elongated styloid processes should show up on the lower setting, albeit in lesser detail. At least one could diagnose "suspected Eagle Syndrome".
** Most of the Dental surgeons and Maxillofacial surgeons that I contacted said the CBCT are not adjustable enough to cover the neck area, whereas the last women I spoke with said it could be done with some models, but it was unlikely that any of the clinics would agree to do anything non-Dental/Maxillofacial related.
Good luck again,
This is fascinating! I have been on the search for the right scan and had thought that the cone beam would give me the answer I needed for diagnosis, but didn’t know why. This makes sense. With that said, though , I was all excited to get the cone scan (have to wait now since pregnant), but it looks by what you’re saying is that the cone beam scan doesn’t reach the area we need reached. May I ask who told you that? I ask bc I thought I had read successful diagnosis’- both on this site and in my google research, indicating that it is an important tool in diagnosis.
My ct scan didn’t show a thing as elongated. I believe my styloid is calcified, I tell you, if I out my finger where the bone is, I can feel a hard bony mass there, radiates pain, is bilateral, etc etc
Thanks Red Pill, you have done great information indeed. Today was my appointment with the doc, he did say it is likely based on my symptoms that I indeed do have Eagles Syndrome. But being pregnant I too have to wait for scans which I suspected, he wasn’t all that interested in the ct I already had and said not to worry bout it either. So I guess for now I’ll just wait out the next 6 months until bubs is born and then tackle this retched thing again…
Take care everyone
I was told this by the radiology specialist at an imaging centre here in Vancouver that caters to dentists, orthodontists and maxillofacial surgeons. Keep in mind that it might be a different story in other places. I have not tried asking every clinic and lab that has a CBCT machine, but given the way the Canadian Health care system is structured, it seems reasonable, especially if a standard CT machine can duplicate the results of a CBCT.
FYI, i spoke with the US manufacturer of a CBCT (http://www.i-cat.com), and they wouldn't even tell me if a CBCT could image that part of the neck. They simply said "We can't give out medical advice to patients. You have to speak with your dentist", so their must be some regulations regarding this in the US as well. Even if they agreed to perform the scan and it was successful, they would still require a regular radiologist to interpret it. It appears, currently at least, that CBCT scans are solely used in the dental field. Probably why the radiation dosage is so low. Teeth are made of Calcium!
Red Pill (Perhaps one day my personality will flip over to Bue Pill)
This is fascinating! I have been on the search for the right scan and had thought that the cone beam would give me the answer I needed for diagnosis, but didn't know why. This makes sense. With that said, though , I was all excited to get the cone scan (have to wait now since pregnant), but it looks by what you're saying is that the cone beam scan doesn't reach the area we need reached. May I ask who told you that? I ask bc I thought I had read successful diagnosis'- both on this site and in my google research, indicating that it is an important tool in diagnosis.
My ct scan didn't show a thing as elongated. I believe my styloid is calcified, I tell you, if I out my finger where the bone is, I can feel a hard bony mass there, radiates pain, is bilateral, etc etc