After speaking to my Neurologists nurse today, she isn't sure if the CT scan with contrast is the correct test I need. I left a list of things I want the Xray tech to look for. After my nurse was talking with the xray techs they told the nurse they weren't sure that they could see the nerves on the CT.
Now my question is, how did most of you see if you had any nerve or vein damage? I will leave a list below of all what I told the nurse for the radiologist to look for on the CT with contrast. Please tell me if I missed anything or need to take anything off.
When I went to Dr. Cognetti, (who is one of the most experienced Eagles doctors) he looked at the CT scan with contrast to determine the blood flow through the veins and arteries.
I've had both vascular and regular Eagles and have been to lots of doctors for Eagles and I'm not aware of any tests that show affected nerves. Or rather I should say that I've never had anyone do a test on me to try to see what nerves were affected by my styloids. Maybe an MRI could, but I would think someone would have done an MRI on me if that were the case. When I got diagnosed with glossopharyngeal neuralgia, it was done strictly by what symptoms I reported and not based on any test. Maybe other people have had different experiences and can report here. Did the ES Information tab have information on what the different test show?
Several doctors have said that it's difficult to determine what symptoms are caused by Eagles and the only way to really tell is to have the styloids removed and then see if the symptoms were resolved. The important thing of course is to determine styloid length and angle. So I think what the nurse asked for is good, but I'm not sure they'll be able to see the glossopharyngeal nerve or the trigeminal nerve. But I guess it doesn't hurt to ask. Maybe they could look at the hyoid bone too.
It is true that MRI or ct are unlikely to how any nerve damage, unless there’s something grossly out of the ordinary or out of place. Even then it’s speculation on possible nerve damage. An EMG is a further test to check for nerve damage, although any emg results are totally dependent on the operator and their ability to test the correct nerve. Unlike the skeleton, there’s a lot of variation in the body as to where nerves can be, and what depth their target testing muscle lies. EMG also tests within the range of “on” or “off”. That is; irritation, transient compression, or things less than complete nerve damage don’t always show up or be qualified within the range of “acceptable variation”.
It’s additionally very difficult to get the neurologist operating the emg test to test outside of the ordinary, and some nerves are considered untestable.
(For example, my creepy arm is not under my control and shows many classic nerve avulsipn symptoms, but the typical line of testing shows nothing, and depending on who you ask the long thoracic nerve is untestable. So it’s a big shrug as to what’s up with my witch arm on paper, but all symptoms point to one of the nerves they don’t want to test.)
I don’t know if the glossopharyngeal nerve or the trigeminal are one of these, but in all my research I can’t say I’ve run across and emg based diagnoses for associated issues. Like Heidemt said, it tends to be based on symptoms.
But don’t get disheartened. I know a lot of docs push the “Pics or it didn’t happen” angle. However, if you have an anomalous structure, and nerve symptoms associated withh At area, you may not need pics!
Dr Cognetti told me he finds the most definitive diagnoses in the Resolution of symptoms after the surgery.
Your list seems pretty solid, not just for testing but for demanding follow up action to resolve your problem as well. If one doc won’t look, find another.
I know Ive stated this before, Im trying to get the most out of this one scan to prevent me from having to get more scans or tests done. I want it done the right way the first time (this isnt the 1st one but more recent one).
Now that I know what to look for and have the radiologist look more closely in certain areas as well as measuring will help as well. I did forget the hyoid bone, so thank you heidmt, I appreciate your feed back as well as yours Snapple.
Does it cost more for them to do the 3D scan? I know you can turn a CT scan into a 3D but didn't know if they did it, it would cost more? I forgot to ask them that when I talked to them today. THey keep calling me back with more questions regarding this scan before they order it. I think its because they don't think this is the right test I need. So needless to say, they haven't ordered it. They want me to call Dr. Cognetti to find out what his protocol for the CT scan would be that would be the most beneficial to both of us. UGH. Im frustrated as Im not going to bother Dr C with this as I haven't even sent him any of my records, in fact, Im waiting to get the results of this scan done then contact him. As Ive read that is what most of you have done on here. Im still worried about traveling so far away for such a procedure. I know most have traveled to see a dr but I would have to travel from ND to PA. Its totally worth it because he is great at what he does and I don't want just any doctor to do my surgery. Id like someone who has experience in this surgery.
As far as I know, CT's don't show nerve damage, as the others have said, so would be unlikely to show if the Trigeminal or Glossopharyngeal nerves are compressed etc. A CT with contrast shows any compression of blood vessels and that's really helpful if you have any vascular symptoms (dizziness, eye pain, fainting, stroke like symptoms when you move your head certain ways, pulsing in your head/ neck, pulsatile tinnitus, to name a few!).
I had an MRI to rule out any other neck problems, and that showed a bulging disc, with compression of a nerve by that, but it didn't show the cause of the problems with TN I had, so didn't show if the styloids were compressing the nerve. I think there's an MRI technique (thin slice) which is used to look for compression of the TN, but even that doesn't always show anything- I've read about it on the Ben's Friends TN site, but I don't think it's been used for Eagles.
So your best bet is to have a CT with contrast and ask them to look for any compression of the blood vessels in the neck. They can turn a CT scan into a 3D one with the software, but if it's not done with contrast when you have it (they inject dye into the veins) then it won't show the blood vessels.
I can appreciate you not wanting to bother Dr Cognetti, but it might be worth speaking to someone in his office just to double check if you're concerned. I can't believe your neurologist isn't more helpful with the advice, they should know what scans show what!
My son's surgeon said they don't know what the nerves look like until they get in there with their own eyes. None of my son's nerve issues showed up in any tests. Only the styloid length and calcification was apparent on the CT. The 3D, as Jules mentioned, is a software change to the 2D picture. I do not recall any additional billing for the 3D image, but I will tell you that my son's doctor said the 2D image was much more helpful to him. He didn't need the 3D.