I’ve posted several previous threads about my condition and the difficulty I’ve had in getting better.
I’ve been diagnosed with both Eagle Syndrome and Thoracic Outlet Syndrome in the past, with only partial success for the TOS and no success for the Eagles.
I recently used the 3D slicer program to convert my CT scan into a 3D model, and I wanted to get your feedback:
The first time I had Eagle Syndrome surgery, the doctors thought that maybe the greater horn of the hyoid might be causing problems so they cut it off on both sides. But, as you can see, they left the calcified stylohyoid ligament attached.
The styloids themselves don’t look THAT long, but it looks to me like there may still be some impingement, especially on the right side.
Doctors have not confirmed any of this though. I’ve recently had an ultrasound of my carotid arteries and jugular veins, plus an MRI/MRA of my head an neck. I was told that they were all normal.
I’ve been referred for surgery for Thoracic Outlet Syndrome on my left side, but I am doubting whether or not TOS could explain all my symptoms.
I just wanted to see whether anybody has any feedback on these images I captured.
I’m really hoping to get this problem fixed this year, since I’ve been dealing with it for about ten years.
I agree that your styloids don’t look excessively long. It seems odd that they would have left calcified ligaments behind unless they didn’t know the importance of removing them. Since calcified ligaments are also considered ES even in the absence of elongated styloids, it is entirely possible that at least part of your symptoms are coming from vascular/nerve compression by the ligaments. The best test to determine vascular compression is a CT scan w/ dye. You would need to request to have the scan taken w/ your head in the various positions that make your symptoms the worst to determine if there’s vascular impingement or not. An MRI/MRA will show soft tissue injury. The cranial accessory nerve can be impinged by styloids or calcified ligaments & the result is shoulder pain so that is another possibility. Don’t know if MRI/MRAs are sensitive enough to show nerves or nerve impingement. Maybe w/ dye?
Bear in mind we’re not doctors, only amateurs like you… the last pic looks as though there might possibly be some compression by the styloid process, I can’t see anything in the others.
Again, no expert, but my first glance at the hyoid bone pic, I presumed that was the two horns left on! (there’s greater & lesser horns of hyoid bone) But looking close, I think you’re right that there could be calcification, & I really don’t understand why it was left in.
There’s some interesting pics in a research article to compare to yours: https://openi.nlm.nih.gov/detailedresult.php?img=PMC4491553_CRIOT2■■■■70.002&req=4
I would definitely show these images to doctors & ask them to clarify this before you have any more surgery.
Sorry we can’t be any more helpful, it’s frustrating to go through surgery & not get any benefits…
Thanks for the feedback. I have indications of thoracic outlet syndrome that have led my specialist neurologist to recommend surgery.
I’m aware that thoracic outlet syndrome can produce a lot of odd symptoms, especially when there is vascular compression involved. I’m just worried that some of my symptoms may be related to residual compression related to eagle syndrome.
It’s weird that I was diagnosed with both conditions.
I have had multiple different ENTs look at my scans, and none have seen anything striking. I was so worried about vascular compression that I’ve had CAT scans with contrast, MRI/MRA and Ultrasounds on my carotids that all were negative.
I understand that we are all amateurs here, but should I feel confident that there really isn’t anything serious going on with Eagles syndrome at this time based on my scans? Or is this condition so poorly understood that serious problems or complications could elude most conventional scans?
I remember hearing someone say that there are experts who would be willing to review scans and give consultations from a distance. Am I remembering this correctly? Maybe if I could have a real expert look over all my scans and listen to my story, maybe they could provide some guidance?
Or maybe I should go ahead with surgery for Thoracic Outlet Syndrome and see if that clears up some of the symptoms I’m attributing to Eagles?
Any advice anyone could offer would really be appreciated.
I think that Dr Cognetti has reviewed scans for members & done over the phone consultations, & so has Dr Samji. I would presume that because of the TOS surgery might be more challenging? If so, then a really experienced doctor would be best. Here’s a link to one post about phone consults:
There’s also a link in there to another discussion about what CTs to send to Dr Samji. I searched ‘phone consults’ & it came out with a few links to discussions you might found helpful.
Like I say, I don’t know a huge amount about TOS, so don’t feel that I can offer any advice about which surgery would be best to opt for; I think that you’d be better to try an get an expert doctor’s opinion on the best way forward. But getting a phone consult is a good idea!
Thanks for your input! I want to pursue every possibility before any surgery. I’m hoping to resolve lots of issues together. I had my CTA Brain, CTA Neck & CT Soft Tissue Neck WO/W Contrast last week. I emailed Dr Cognetti to find out what else I should gather to send him, but have not gotten a reply as yet. Now, since you mentioned TOS, I’ll do some research on that. My neurologist is being very helpful & is willing to order any tests. What would the tests be for TOS? I also have Trigeminal Neuralgia, which is not staying well controlled with Tegretol. Have to increase the dosage again. BTW I’m the one Jules quoted about. My daughter & I were both diagnosed by our dentist. The pursuit continues.
Royce
I’m using DroidRender - 3D DICOM viewer on my Android phone. App can do 3D as well as colored 2D models from basic DICOM format. But sometimes I wish to have a biger screen, and also takes a while to get used to controls, but it’s very powerful app.
It was very useful for me personally when I visit specialist. It’s funny to see how usualy doctors or assistances running around trying to find computer with DICOM viewer and then loading models on supper slow machines that takes 5-10 minutes to get the picture. While I have everything in my pocket.
On my Galaxy S7 it takes about a minute to render 3d model from CT scan of 600 slices.
For Android you can find app by link:
Thank you for this great resource, MrNikolay. Glad you’ve been able to teach your doctors something! Sure hope you find a great ES surgeon soon. If you’re willing to travel, Dr. Cognetti in Philadelphia is on your side of the US even though still a bit of a hike for you. He’s an excellent & experienced ES surgeon. You can contact his office & request a second opinion phone conference w/ him if that seems reasonable. Optionally if you want to make the trip to sunny California, Dr. Samji is an awesome ES surgeon (I’m biased…he did my surgeries…).
Isaiah, you absolutely right, I’m planing to visit Dr. Cognetti in Philadelphia in near future, and exectly - for second opinion. Are you reading my mind? Wow!
I’ll tell my ES journey story little bit later in deducted post.
