This was particularly interesting to me: "These cranial nerve palsies can present as additional symptoms of altered taste.”I’ve consulted with several ENTs and surgeons, including some renowned MDs. I’ve asked each of them if my ES explains the fact that I’ve had a constant bitter taste on the side of my tongue, the same side severely affected by ES, for about the same number of years of all right-sided pain symptoms. None of the MDs thought that the bitter taste could be explained by ES.
I read the article & disagree w/ a few of their premises such as the carotid variant is the most common vascular variant of ES. Evidence from this forum is that IJV compression is far more common than ICA compression. I also would argue their comment that the vagus nerve is rarely affected. We’ve seen on here that it’s almost always affected by ES. Their focus was mostly on vocal symptoms caused by vagus irritation. The. vagus nerve affects a vast number of body functions & not always the voice. I had crazy blood pressure issues, heart palpitations & breathing difficulty when I exercised hard before I had my surgeries. Those were symptoms of a distressed vagus nerve. Others have had gastric issues, body temp regulation issues, severe anxiety, bladder dysfunction, & other things.
So often I wish I could have a chat with the writers of a paper like this one & share what we’ve learned from our members here. I immensely appreciate the authors’ comment that Otolaryngologists need to be educated abt ES & become familiar w/ its treatment options. I also appreciated that they offered alternatives to surgery while admitting surgery was actually the most helpful in stopping symptoms for good. I just wish their patient sample size was hundreds not just a couple of people. They’d have a much more complete picture of the ways elongated styloids/stylohyoid ligaments affect those who suffer from ES.
It seems to me that there is no peer-reviewed study that has surveyed a large enough number of subjects with ES. So any reviews like this one (that rely on peer-reviewed studies and case reports) fall short. As does the knowledge bases of MDs
It’s very frustrating for all of us who feel dismissed or worse when we report our symptoms to our MDs and they reply that our symptoms can’t be explained by ES.
Sure, many of us have other conditions causing symptoms but there should be some clear patterns–like those observed by @Isaiah_40_31 and others here–on what patterns we have in common.
So far, this is the most comprehensive list of symptoms:
Does anyone have a contact with an ES researcher (or a chronic disease epidemiologist) who might be interested in surveying us? Maybe one of the authors of that recent review might be interested in doing a survey of those suffering in this group.
There have been a couple of symptoms surveys done by people on this forum but they were done a few years ago. I think we have some new information that could be added. I found the link for one of them but it no longer took me to the survey so I’ll have to do some digging to try to find it.
I’ll haven’t read the link you just posted but will do so soon.