Hi Newuserhere, here is an info on contrast media (translated from German) in the following. Earlier I’ve seen an report where they said that remaining Gadolinium in the brain is verifiable after about 4 contrast enhanced MRI scans. I don’t think that’s very healthy to have that rare earth element inside your brain.
I wouldn’t be too anxious about radiation, because, for example, people who work under ionizing radiation are permitted limit values that roughly correspond to an annual full-body CT. Each year. (At least in Germany, in the US I expect limit values that may be even higher.)
Information on MRI contrast media
Gadolinium-containing MRI contrast media should not be confused with X-ray or CT contrast media, which usually contain iodine, as these are chemically very different substances. MRI contrast media are extremely well tolerated, only cause allergic reactions in rare cases (<0.2%) and are primarily not damaging to the kidneys. In connection with so-called “linear” MRI contrast media (not used in cardiac MRI examinations), serious side effects have occurred extremely rarely (0.01%) in the past, such as nephrogenic systemic fibrosis (NSF), which can lead to a pathological increase in the connective tissue of the skin, muscles and internal organs. In recent years, however, through appropriate education and above all Due to the use of highly stable “macrocyclic” (chemically structured in a circular manner) gadolinium-containing MRI contrast media (with adapted dosage, especially in patients with severe renal insufficiency), NSF no longer occurred almost worldwide.
So far, the potential deposition of gadolinium in certain areas of the brain has been little studied. Previous studies have already shown that a minimal amount of gadolinium (<1%) can remain in the body. If the chemical structure is intact and there is no brain disease (i.e. an intact blood-brain barrier), an accumulation in the brain should actually be excluded because of the size of the gadolinium chelates. In patients with a disturbed blood-brain barrier, however, there are low levels of gadolinium in certain areas of the brain, especially if several examinations with contrast media are repeated and short-term. This has been shown for contrast media with a “linear” structure (which, as already mentioned, are no longer used or are only used for certain questions outside the heart). For the “macrocyclic” contrast media commonly used today, this has hardly been proven so far (except for very large doses in animal experiments).
If there is a measurable accumulation of gadolinium in the brain at all, no scientifically based damage to health or symptoms (such as cognitive or movement disorders) have been observed so far. However, since long-term experience and previous knowledge in this context is limited, the approval for some “linear” MRI contrast agents was suspended on February 28, 2018 in the interests of patient safety. (EU)
I just called the imaging center to ask what the ct order is.
They said my order is ct neck soft tissue with contrast. The contrast is iodine given through IV.
And I asked them if eagles syndrome is mentioned in the notes to the radiologist. They said nothing mentioned like that. The code mentioned as diagnosis as
R 59.0
M54.2. And the comments given as cervical region right side and pain in neck.
So, they said nothing mentioned about eagles syndrome. They said even if it’s in the CT imaging area, they will include or report only if it’s mentioned in doctors comments or notes. So they won’t include other things in their report.
I have to ask my doctor tomorrow to add it. To be honest , she don’t know about eagles and she is not concerned about it much. What should I ask her to include in the notes in the ct scan? Any diagnosis codes or what comments to be written there to check for eagles.
I am so glad that I called them today to check that. If I scheduled and went for the imaging directly, there is a chance that they would have missed the eagles findings totally. I should email my doctor tomorrow to include the comments about eagles. I have been emailing her last 2 days about my lab results and no reply from her. I got few lab results which are high and I got pap results too. It’s been 6 days after the results and she didn’t review it yet. So I asked her if she did the review of my results. No answer yet. I am worried if she will include my notes for the eagles in the imaging.
She might feel that I am very aggressive or hypochondriac. But I am not. Since she don’t know about eagles, it’s difficult to make her understand and prove it:(
Sounds good. I had the same a few weeks ago and it still shows stylogenic IJVS after 2 previously surgeries. As you had the CT scan you are able to consult experts for ES and see the images by yourself.
I don’t know if it was mentioned before, but as you want to ask Dr. Samji in CA for advice you might probably need to send him an CT w/out contrast.
Good luck.
Good job following up w/ your doctor! Do not let your doctor intimidate you. It is your body, & the whole reason you requested the CT is to rule out ES. If she didn’t add that to your CT report, she needs to in order to comply w/ your goal of finding out whether or not you have it. It’s just a matter of a quick email or phone call on her part. It shouldn’t be a big deal. If she doesn’t add it, you can push her, after the fact, to ask for your CT to be read again to evaluate for ES but that’s kind of a pain in the neck for you & the radiologist.
I’m sorry to hear you still have IJVS after surgery. I’m sorry, I’ve forgotten how long ago your surgeries were.
It sounds like either the styloids weren’t shortened enough or they’ve regrown some if they weren’t removed back to the skull base. Do you know if the transverse processes of your C-1 or C-2 vertebrae are involved or just the styloids?
Did you see one of the German doctors on our list? Not sure what their policies are as far as styloidectomies go so I don’t know if you’d get any better results by seeing one of them (if you haven’t already).
Sorry for all the questions…just trying to understand your situation better.
Thank you.
What you had few week ago? You had your surgeries? Did your symptoms come back after the surgery?
I didn’t know that Dr.Samji won’t see CT with contrast. I am planning to have a tele visit or phone visit with him after the CT scan. I don’t know if he won’t see CT with contrast. He reject patients who had ct with contrast? I will check this out. I don’t have any good providers in my state and have to consult out of state ES providers for diagnosis. Let me get the ct first. I am stuck in here for the diagnosis codes. My doctor didn’t include anything for eagles findings.
Yeah I agree .if she didn’t add those, it will be totally hectic thing again.
She didn’t order ct for eagles, even though I had eagles in my mind. She don’t know about eagles.i told her I need imaging for eagles. She don’t know about it and not concerned about it much.
She ordered CT since I have pain and tenderness in the lower jaw and neck. She palpated those areas and it hurts. So she said I need imaging. But she wanted me to do mri, she couldn’t order mri for insurance coverage. So she said , she will order me ct scan.
I was expecting that she would have added eagles as well in the comments. But she didn’t. She didn’t add anything now. I am planning to ask her to include the below. I am not sure if she will agree to it. She is kind of pissed or annoyed I believe as I am asking the diagnosis on my own. I felt that during my visit. Her tone was so aggressive, usually she is very kind and polite person.
I am planning to ask,
Length of styloids
Calcification of stylohyoid ligaments
Length of hyoid bone.
Are these enough? Should I include anything else?
Thanks for your inquiries.
The operations are now 2 years ago. With the first, they made nonsense and operated on the wrong bones. The second surgery was probably not shortened enough. Another operation will probably follow in Bonn at the end of January 2021.
I have now also sent my files to Doctor Samji in order to get some good advice. I look forward to his call.
@Isaiah_40_31, How to push her to do? What if she won’t add even if I send her the email. She won’t respond back too. So I will not be sure if she added or not. I don’t want to miss this ct scan chance to miss eagles diagnosis. I want to know if it’s in or out.
I had a CT w/ contrast of my neck.
The surgeries were longer ago. The second surgery improved the symptoms, but there are still some unacceptable issues. In 2018 I had a CT w/out contrast. I sent both to Dr Samji now waiting for response. His Assistant is wonderful and responding very quickly. She wrote me the requirements:
1. Measurement of the Styloid on CT scan (head and neck w/out contrast) - No others scans are acceptable. If you do not have this scan yet, you will need to request this from your Primary Care provider. We can not order the scan for you, as you are not an established patient to us yet.
2. Official radiology report and CD of scan
3. Brief summary of your symptoms
4. Fill out patient health form and send back to us ( can be found on our website)
They can measure styloids with the contrast too, & I think you’re right to make sure your CT is assessed for that. I know Dr Samji prefers noncontrast CTs, but whether if that’s all you have he would accept it or not I’m not sure. Sorry that I can’t help you more on that one, but maybe go ahead with it & see what it shows?
Yeah @Jules. I will check what it shows. But I am not sure if my PCP will include what I say. I am going to ask her to include these three notes in the imaging order. I don’t know if she will accept it. I think she is being annoyed with what I say about eagles and she is kind of pissed up.
She is thinking that I am telling diagnosis based on internet. But when no one have the answer for my pain, I am trying to give the diagnosis names. How to make her include these in my order. I can’t go ahead without her adding those details. Beacuse it will be waste of time and radiologist will not check these things if it’s not in the doctor comments or notes.
How to make her add these. I keep on sending her email and no response from her. She have added notes to the scan as r59.0, m54.2 as diagnosis codes.
Its good that you are following up and making sure all is in order because the medical systems have cracks and details fall thru them. All she needs to do is add “evaluation for eagles syndrome” to the order. She does not need to add any diagnosis or cpt codes.
keep pushing. The squeaky wheel gets oiled. Its good at least your PCP is ordering as that is half the battle. When you actually go in physically to get the Ct scan, sign a request for medical records at the time so you can obtain a copy of the scan on disk. If the staff are nice (and you are nice to them) they will expedite the mailing of them.
Sorry, I’ve forgotten that you call PS (processus styloideus), SP (Styloid process). It is all the same.
The CT soft tissue of the neck will show the areas of interest like the base of skull too. That’s totally fine.
Well if PCP is getting aggravated and you hit road blocks to adding note, you can always get the scan. Just because the radiologist doesn’t have it in the order to look for doesn’t change the content of the scan itself. If you plan on sending the scan to Dr. Samji, he will read it himself anyways and look for that. There are more than one way to get past these road blocks.
You can always communicate strongly to the radiologist when you arrive for scan what you are seeking and they may take a look at those areas anyways. You could ask for radiologist to show you the scan on the screen and pick his/her brain. If you pick a time when its slow, they may be willing to take the time. I suggest you schedule the scan and let the cards fall. The scan on disk is the ultimate goal.