I totally agree about the muscle guarding piece. I keep catching my left SCM engaged when I’m laying down and it’s the side with the styloid and hyoid issues. I think it’s either being irritated via the spinal accessory nerve, or I’m subconsciously engaging it in self-protection to pick it up off my greater horn and styloid area. When the SCM is slack and loose it actually compresses things worse than when it’s engaged and picking itself up off of my vascular structures. Also when we are in fight or flight the scalenes become rigid and engaged chronically which likely adds to difficulties with neck range of motion as well.
I fortunately have found a surgeon home in Canada to operate on me, so surgery will be free.
My issue is when I’m sitting I constantly need to use like a headrest or something similar or else the pressure and heaviness builds up which is obviously a strong sign of instability but if I do a “sensory trick” such as subtly placing a hand on the back of my head but not actually providing any support, the pressure lessens which in instability would usually require more than that to help symptoms.
Thats lucky you can get it for free in Canada! I’m getting it done at home in Australia but the Australian healthcare system is trash as much as people say it’s good. I have top private health insurance and is still costing me over $15k out of pocket so really praying for some relief
Have you checked for IJV compression between the SCM and scalenes? I have the styloid-C1 compression but also further down by the SCM and scalenes. I think the sensory trick works for me because it changes the pressure of the scm on the scalenes and allows the IJVs to breath.
Here’s my imaging showing both pinches. Both pinches are happening on both sides.
How are you with motion? I have mal de débarquement syndrome chronically that gets worse after car rides, elevators, treadmills, etc. and it’s almost definitely coming from the IJV compression.
@Benwt I’m glad that you’ve had a full team review your case, I really hope that the surgery will help you! Are you able to share your doctors’ names, or would you rather wait until after your surgery? And let us know when you do have a date!
Interesting! Similar to me I don’t have my scm or scalene compressing but one of my main compression factors is my digastric muscle so could be working in a similar mechanism, one of the one medications that helps me is klonopin/clonazepam so my thought is maybe it relaxes those compressing muscles where as I’ve read with people who have instability muscle relaxants make it worse
Sure! I’m in Australia and my ENT surgeon is A/Prof Elliot and Neurosurgeon is Dr Rao, luckily they seem to be the best in Australia and Dr Rao is one is the global leading surgeons on instability/hypermobility (I don’t meet the criteria for EDS but am hypermobile and we suspect there may be some connective tissue disorder but frankly as he said it’s on the lower level and finding out what it is wouldn’t really change anything - fair point I appreciate) too. Both are great surgeons so far, not sugar coating results to me at all which I like and have in depth walked me through the mechanisms, it’s fascinating how this is still such an emerging condition and so little is known about how each individual reacts to it. I’m booked for surgery Feb 6th because of insurance reasons but counting down the days and saving my pennies
I’ve put your surgery date on my calendar, @Benwt & will pray for you then. We have Prof Elliott & Dr. Rao on our Doctors List so I’m glad that’s who is doing your surgery. We’ve heard a lot of good reports about outcomes from their surgeries.
Sounds like you’re in good hands… why aren’t you able to see them with the free healthcare system? Is it like the UK’s NHS, but some doctors only work privately?
Yeah pretty much, if you have any kind of a complicated condition your only options in Australia is to go private and private health insurance only really covers the hospital cost not the actual surgeons fees. There’s only one surgeon who deals with cervical instability and one ENT who treats eagles syndrome. Both these surgeons operate together. I live in Melbourne meaning I have to travel to Sydney for any treatment.
