Hi Tara,
A CT scan is waaaay better for diagnosing ES unless they’re looking for something else as well. You may want to talk to your doctor about that before going in for the MRI. Glad you’ve found a doctor who’s willing to work with you. That is AWESOME!!
So sorry that you’re getting such difficult symptoms, but very pleased that your doctors are taking you seriously & are wanting to help.
If you haven’t looked already, there is info in the Newbies Guide- common symptoms & what might be causing them, as lots of your symptoms could be down to ES.
As for surgery, unfortunately no-one can say whether surgery will cure them all, it’s a personal decision as to whether the symptoms & their effect on your quality of life outweigh the risks of surgery. But leaving the calcified ligaments in could cause more damage to nerves & worse symptoms…It’s perhaps a good idea to send your scans to one of the doctors; maybe sending to just one would give you an expert opinion but save the cost of 2 consults? I believe Dr Samji does more ES surgeries than Dr Cognetti, so might be a good bet?
If your doctor is a skull base surgeon then he should be used to operating in the area of the styloids, if you do opt for surgery. Although your styloids are not hugely elongated, they are still a bit longer than usual, so would be a good idea if you can get them removed or shortened as well as the calcified ligaments removed.
Best wishes, thinking of you as you make this decision, & let us know how you get on with the phone consult.
Hi Annieloo,
I agree w/ Jules. Your symptoms are all seen w/ ES so you’re case is not unusual from that standpoint. As far as your masseter muscle & numb teeth go, the facial & trigeminal nerves are often compromised & irritated due to ligament calcification or styloid elongation. Those are the nerves that would affect that part of your face. As far as your other symptoms go, there are other cranial nerves that are obviously being irritated as well & thus creating the variety of symptoms you have. You may even have a bit of vascular compression which causes the intermittent dizziness. Irritated cranial nerves cause crazy & diverse symptoms including horrific pain, numbness, burning, pressure, etc. ES can cause lymph nodes & muscles to swell depending on which nerves are irritated & how the body is recruiting “help” to try to alleviate the problems caused by the dysfunctioning nerves.
Calcified stylohyoid ligaments tether the hyoid bone so it can’t move when you speak, cough, swallow, laugh, sneeze, breathe, etc. When the hyoid can’t move then other muslces, tendons & ligaments must come into play & do jobs they weren’t intended to do which causes pain, pressure & swelling in unexpected places. The only way to stop this cascade of symptoms & pain is to get rid of the cause. As Jules noted, leaving them in place allows further calcification which will only create worse & potentially longer lasting problems or permanent nerve damage.
Both Dr. Samji & Dr. Cognetti do bilateral ES surgery as two surgeries. There is much swelling in the throat post op & for safety reasons, they both feel two surgeries are better than one. It sounds like the surgeon you’re seeing is very compassionate & wise. I admire his humility in recommending you get a second opinion or two rather than insisting he should just do your surgeries. No surgeon will guarantee that surgery will totally remove your symptoms & pain, but from the results we’ve seen on this forum, most people have a significant reduction in symptoms & pain after having surgery. If your surgeon is a very experienced skull based surgeon, he should be able to do a successful ES surgery for you, however, I also understand your trepidation in being his “first”. I’ll include the link to the Doctors’ List below so you can see other doctors in your province & further east who have done ES surgeries. You can look each one up using the magnifying glass icon above right to see what posts have been made that mention them by name.
I hope tomorrow is a good day for you as we begin a new decade. Never stop hoping for improvement. You’re on the right path!
https://forum.livingwitheagle.org/t/doctors-familiar-with-es-countries-outside-us/4753