Wow everyone here is so incredibly helpful! Would greatly appreciate any opinions please. My pain started years ago and has been nonstop, never ending since. It’s a deep nerve pain in my cervical spine that creates a tightness in the base of my skull. I have this pain along with bilateral headaches every day without ever a break.
Years ago as an adult I had a tonsillectomy to try to resolve my constant throat pain. The tonsillectomy didn’t help, but about eight weeks after the surgery is when this spine pain, base of skull (occipital) pain, and headaches started. I’ve seen dozens of neurologists and had so many pain management injections. Not one thing has ever helped, even for a few minutes.
I then met with four of the top ES doctors and had a catheter venogram to check my jugular vein compression and if it was alerting head pressure. My test was normal.
My symptoms are totally bilateral. By the end of the day it feels like my head will crush my neck. I’ve had almost 35 MRI and ct scans and still everything is normal.
Now, I’m terrified and in pain every minute of every day. I’ve had ES docs say remove styloids and just see if it helps but wow does this seem unrelated. I’m about to go through more terrible CSF leak testing because some of the symptoms still match.
The final piece is the right side of my neck looks so different than the left. My scm is like a thick rope on the right, where the left side looks totally normal. All of my pain is in the base of my skull and cervical spine though. I’m also considering Botox in the scm.
Thank you from the bottom of my heart to anyone responding.
I’m sorry that you’re in so much pain! We’ve had other members who’ve got unilateral enlarged SCM muscle, so you can search out those discussions, if I remember right it was possibly linked to a shoulder injury as well as possibly ES, so this might be another rabbit hole? Here’s a couple of discussions which might be worth a read: Birth trauma causing vascular outflow obstruction - General / Eagle Syndrome Stories - Living with Eagle 9months Post-op - help! - Symptoms and Treatments - Living with Eagle
Botox/ PT/ myofascial release massage might all be worth a try for you for that muscle?
When you had imaging done for your possible IJV compression, were collateral veins noticed at all? We see quite often that if there is a bit of compression that veins at the back of the head swell to take the blood flow, and many members have had pain from these in the area you have pain. (If you have the images feel free to post them on here- we have had some members whose images only show mild compression, but they’re very symptomatic).
Feeling like your head might crush your neck is symptom mentioned with Chiari malformation, but I would presume somebody would’ve picked that up on your MRIs by now? The same with CCI?
Normally we’d suggest that someone sees one of the experienced VES doctors, but I presume that you’ve seen at least one of them? (Dr Hepworth, Dr Nakaji, Dr Costantino or Dr Cognetti?)
I wish there was something I could suggest to help you , maybe others can suggest where you go from here, but it would be interesting to see any CT you have.
@Jules took the words right out of my mouth, er…fingers…, If you have or can convert some of your images to 3D in the sagittal plane that would be helpful &/or you can post a CT slice at the C1 vertebra which can also be helpful. We’ve sometimes seen things that doctors, even experienced ones, miss.
Programs you can use for 3D conversion are radiantviewer.com for PCs or Bee Dicom Viewer App if you have a Mac. You can also upload them to dicomlibrary.com which anonymizes the images & converts them to 3D. When the process is done, you’ll receive a link to access your converted images.
Please make sure to cover up any personal information that shows up on images you plan to post.
SCM enlargement/dysfunction can be the result of your spinal accessory nerve on that side being pinched, irritated or damaged by the styloid so what you were told i.e. “I’ve had ES docs say remove styloids and just see if it helps” could be the solution to what you’re experiencing.
Is there anything that triggers the pain, vs. something that calms it down? Things that escalata and de-escalate pain may be clues as to its epicenter.
I too have anatomical difference between left and right (partially or fully due to scoliosis of the spine) and pain on my left side, traveling from the base of the skull down the neck and towards the shoulderblade. I also have definitive “something” that I feel under my tongue (in the back) and a calcified portion of stylohyoid ligament, although I am skeptical that it is related to the pain in the back of my neck.
I have things that trigger the pain, such as engaging muscles of the neck there when my head is suspended by those muscles, or turning my head to the left.
Same for you, there has to be a trigger. Or is there none?