Hello , new here. Really appreciate your support. As you can imagine I have a lot of questions.
I 've been struggling with primarily one sided neck stiffness/tightness (which eventually started showing sometimes on both sides after a year ) . The main spots where I feel stiffness is where my right styloid muscle is , mastoid and also all the SCM, lateral throat muscles , clavicle , trapezius muscle and the back of my neck (all of these on the right side) . I’ve been on PT for 1.5 years with no improvement. If something, PT makes it worst sometimes. I don’t have any ear pain, or the sensation of something stuck in my throat or facial pain. I am mentally perfect and with full of energy, its really the stiffness which limits me.
I recently got a CT scan and it is showing elongated styloid processes both sides ® 35mm and (L) 39mm. However my stiffness is mainly on the Right side, where the smaller styloid is (35mm).
I am not in pain generally, but I am with this extremely uncomfortable right sided neck stiffness which limits almost every aspect of my life. Good thing is that if I lay down , I am zero pain and stiffness and I can sleep great. However , if I overwork the stiff muscles or just work a lot in front of my computer, then the flare up of muscular pain starts and usually lasts for 3 days.
Local ENTs in NJ (US) are not entirely convinced it is ES, however I am not responding to any muscular treatment. (muscle relaxers, trigger point injections and physical therapy).
I have had ultrasounds, neck MRIs and the neck CT scan (no contrast) . The only thing that was found were these mildly elongated styloid ligaments.
Any recommendations? Is there really a way to know if this is ES? Typical answer I get from ENTs is " It can or it can’t be ES . There is no way to tell".
Hi & welcome to the site!
I’ve sent you a PM with info about the site, & a link to the doctors list, so won’t repeat all that again!
Unfortunately with ES doctors can’t guarantee what symptoms will improve with surgery, the only way usually is to have it & see! There are steroid / lidocaine injections which can be done into the tonsillar fossa region- it’s often used to partly diagnose ES, but doesn’t always help. If you’ve not tried that it might be worth doing to see if the neck stiffness improves?
Neck stiffness & pain if your neck is turned is a common symptom, not everyone has the feeling of something stuck in their throat etc. Your styloid processes aren’t that long, but symptoms can be caused by the angle of the styloids too, & the thickness. It’s worth checking too from the CT or radiology report whether the ligaments are calcified- ES can be caused by elongated styloid process, &/or calcified stylohyoid ligaments. That might help you decide about surgery.
There have been quite a few discussion about muscle tightness, you might find it helpful to use the search function to see if there’s any other suggestions or tips to help which you’ve not tried.
Sorry we can’t give you a better answer!
Welcome! I’m glad your symptoms from ES are not too bad though I agree your limited neck movement must be really annoying. Jules answered your questions thoroughly & the only thing I’ll add is that styloid measurement from a CT scan is not an exact science. Many of our members have gotten second opinions from doctors who felt the styloids were longer than the CT reports said &/or when surgery was performed, the styloids were longer, thicker, more angled, etc. than expected. It is possible your styloid measurement falls into that category.
The accessory nerve is one of the cranial nerves the styloids can irritate. It affects the neck & shoulder muscles so your symptoms could be a result of that & having the right styloid removed would allow the nerve to heal. Here’s a link to a short video about the accessory nerve that will give you some good information: https://www.youtube.com/watch?v=e4IgAGuP_Hk&t=5s
HI Emilio,
Ive been going thru all kinds of PT for years (decades actually) but more the past 5 years as it began to worsen, increased all the PT, injections, massage, acupuncture, dry needling. everything possible. Constant stiffness,etc. My smaller side was the most problematic and I asked to have that done first. Doc wanted to do the other side but he agreed. My ES specialist makes sure to give you “the talk” that he makes no promises all the symptoms will go away with surgery. I suggest 2nd opinion with a doc who specializes in ES. I know my ES surgeon will do a phone/video consult for about $350 if you send him your CT scan to review on disk. My insurance covered it. I was able to accomplish this within about 3 week period. If he reviews scans and doesn’t think he can help you, he wont proceed with a consult.