Hi all, I am EDS patient with longstanding facial pain and a recent neck injury from manual therapy. I can’t look up and have pulsatile tinnitus on the right side.
I have my CT and CTV SCANS, but my doctor did not ask them to measure the styloid processes. I’m working on an iPad and just want to be able to see them. Any tips for Mac users? I tried 3Dicom and some web-based platforms, where I learned not to try it in Safari. Still struggling in Chrome. I have them in Nuance but can’t make a 3d model from there.
I just wanted some peace of mind while waiting for specialist appointments. The radiologist didn’t see anything on the report. Thanks for any tips or advice!
@Jammit - I’m sorry for your symptoms & the struggle to see your images. Bee Dicom Viewer App is the one that’s most Mac friendly though I’ve heard it can be a little challenging to figure out how to see the 3D images even using that platform. I don’t know if it works best on Chrome or Safari though.
We’re also happy to take a look at your 3D images to give our non-medical but experienced opinions. There are often things radiologists/ES doctors miss or fail to mention that are significant in imaging. It sounds w/ your situation like the radiologist who reviewed your imaging may not be knowledgeable about ES. Many of our members who’ve had significantly elongated styloids have been told all is normal in their radiology reports so that could be your situation as well. If you post images on the forum, please remove all personal information before posting them.
I think I may have found them. Sorry for the terrible images. Anyone have any thoughts on what we’re looking at? And who I should see to get a referral? My doctor is a PA and very reluctantly ordered these scans. Radiologist said all was OK.
Oooh, they look impressive! Your right side especially, it’s down to your C2 vertebra! It’s certainly worth pursuing I would say… How can a radiologist not have seen anything
I have a few things going on with different nerves and am trying to tease out which is due to what.
Ehlers Danlos. Only recently was diagnosed, but I have had facial pain for 16 years. (Do I get a badge?)
Subluxed left jaw.
Major herniation at c5-6.
Suspected CCI.
My nerves have been having a party all over my face but it’s mostly trigeminal, mostly left, and Lyrica has been a lifesaver . But since a very unhelpful PT gave me manual therapy in July, everything is on fire.
I will get the styloids checked out. Just not sure that fixing them would fix the pain, if that makes sense .
I agree w/ Jules both about how impressive your styloids are & how unbelievable it is that a radiologist would have missed them!!
Absolutely!! Better yet a !
Jaw subluxation can happen when styloids elongate & styloidectomies can allow the jaw to move back into proper position on its own. We’ve had members w/ this experience. It’s not a guarantee though.
OUCH! ES could be exacerbating nerve pain being caused by the C5-6 disc herniation.
I’m so sorry the manual therapy shifted something that has left you w/ more permanent nerve pain. I gather Lyrica is no longer helping relieve it?
I think there’s a good chance that getting your styloids resected would alleviate, or significantly reduce, some of your nerve pain. Trigeminal nerve pain is one of the most common symptoms of ES. The extra length & slightly more inward angle of your left styloid could be the reasons you’re more symptomatic on that side. The good news is, it looks like you have decent space between your styloids & the C1 tubercles (transverse processes).The key to a successful styloidectomy surgery is to see a very experienced ES surgeon. Our Doctors List provides a good selection & you can use the magnifying glass icon in the upper right of this page to search a doctors name & see what members who have seen that doctor experienced.
We’ve had members who’ve had good results with trigeminal neuralgia after surgery. Mine improved, but didn’t go away completely, but it does seem to be aggravated with muscle tension & posture now.
!