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.
@PamelaInNYC - we have had members who had odd tastes in their mouths which did seem to be ES related. I think at least some who had that problem noted it disappeared after their styloidectomy(ies).
I will read the article you posted ASAP. Thx for sharing it.
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 haven’t read the link you just posted but will do so soon.
Here are a couple of links for posts Jules made about ES symptoms. They are pretty complete. There are some odd, outlying symptoms that may not be in these posts.
@GiGi1965 - It sounds like you may have a CSF (cerebrospinal fluid) leak as what you’re describing is what CSF tastes like. Since you have pretty long styloids & constant headaches, there’s a chance you may have internal jugular vein compression, too. This can cause intracranial hypertension (IH) which is the cause of the headaches. When IH persists for long enough, the brain will “spring a leak” & CSF fluid will leak out to help relieve the pressure in the brain. Do you have clear drainage from your nose at all? If not, it may just be running down the back of your throat, & that’s why you can taste it.
Did your CT w/ contrast show that your IJVs are being compressed by your styloids &/or C-1 vertebra? If you have a 3D image & can post it here, we can give you a non-medical opinion. Some of our members are very astute at analyzing CT images. If you don’t have a 3D image you can share, you can upload your CT on dicomlibrary.com which will anonymize the images & give you a link you can share, or you can use a 3D slicing software such as RadiAnt for PC or BeeDicomViewer for Mac.
The best doctor for you to consult w/ regarding ES, if you do have vascular compression, would be Dr. Costantino in NY. He does video consults for people who are out of state.
Thanks for replying - I sent Dr. Costantino’s office an inquiry a couple days ago, haven’t heard back yet. I don’t really have a lot of sinus drainage from my nose. will try to mess with my scans this weekend. The report said no sign of compression - good to know that there isn’t in that position! I will keep you informed of everything.
Is the taste stronger on the same side of the mouth as “your affected side”? Near the back portion of the tongue?
If so, it could be due to irritation of the glossopharyngeal nerve (cranial nerve number 9). I’m not certain, but based on my experience and what I’ve learned about glossopharyngeal neuralgia…
Having a nerve that’s irritated sounds way better than springing a leak! I notice the taste about midpoint in my mouth both sides and it makes my mouth water so I’m swallowing a lot. It just started a few days ago. Thank you so much for contact info!
All of these ENTs and speech and language pathologists I saw over 30 years missed the obvious connection: Glossopharyngeal neuralgia can be linked with ES (and I bet with IJV compression since the glossopharyngeal nerve exits the skull via the jugular foramen (Neuroanatomy, Cranial Nerve 9 (Glossopharyngeal) - StatPearls - NCBI Bookshelf ).
Other symptoms I had reported apart from a constant bitter taste at the posterior portion of the right side of my tongue, including right-sided ear, posterior tongue, and throat pain and also worsening symptoms from yawning, talking, laughing, and eating, are incredibly consistent with glossopharyngeal neuralgia.
I had both right-sided ES and IJV stenosis (and other structural sources of crowding in that same area as the glossopharyngeal nerve, at the base of the skull near the jugular foramen, per imaging and also per intraoperative findings by Dr. Lo and Dr. Constantino on 3/29/24).
