I have a somewhat tentative Eagle’s diagnosis from 3 ENTs based on CT showing styloids that are somewhat elongated and also oddly angled. After a recent CTA, one of my ENTs ruled out compression of IJV or CA.
I have a telemed visit with Dr. Samji scheduled on 11/17 and an in person visit with Dr. Hackman in February. In late November, I will also be following up with one of my local Utah ENTs (Dr. Prussin), but Dr. Prussin seems a little bit skeptical that my main symptoms are caused by ES.
I would like to get some clarity on something before these visits. My most problematic symptoms are pain (nasopharynx to ear, throat, and neck) and shortness of breath and lightheadedness. I also have tinnitus, hoarseness, dysphagia, and insomnia. All of my symptoms are 24/7 problems but they tend to get worse as the day goes on. And they seem to be associated with inflammation in my nasopharynx—inflammation that I can feel in my nose and throat that increases the pressure in my face and head and makes it difficult for me to breathe. I can literally feel the tissue in my nasopharynx swell up when this happens.
Can someone point me to some research connecting this collection of symptoms to ES? What nerve or nerves would be involved in the inflammation (and pressure and shortness of breath) that I am experiencing?
I’m sorry, I have no answers but I want to follow this because it’s similar in a way to what I’m experiencing. I often cannot feel my breathing through my nose, almost like it’s too open and I often get pains and a swelling feeling and clicking/popping sounds in my nose which then affects my ability to breathe properly. This then makes me tense up which makes it all worse. I am still waiting for a diagnosis, I have an appointment in 2 weeks time with Jonathan Hughes (I’m in London). Previously I’ve had a camera up my nose and into my throat which didn’t show anything of any significance. So far the only diagnosis I have is stress/anxiety/tension.
Sorry to hear about that. I hope you find some answers soon!
Maybe that is related, but I think what I’m dealing with is different. I have inflammation leading to upper airway resistance. I have been diagnosed with asthma, but none of the treatments for asthma (albuterol, etc.) have ever helped. And my upper airway resistance always comes and goes as a package with my pain, head pressure, and dizziness.
The nerves potentially involved in your nasopharynx, ear, & throat are most likely the vagus, glossopharyngeal & trigeminal nerves. All three innervate the nasopharynx area. Trigeminal can additionally cause ear, tooth, & facial pain/pressure. Glossopharyngeal & vagus are usually the cause of throat pain & dysphagia. The vagus nerve also is in charge of the vocal cords & hoarseness is a somewhat common ES symptoms. The head pressure & lightheadedness you have could be the result of the inflammation occurring in your nasopharynx. We’ve had a number of members w/ terrible symptoms of sinusitis but w/o infection. This sounds a little like what you’re experiencing. The vagus nerve is also involved in lung function/breathing. I had some breathing challenges when exercising prior to my right styloidectomy. These subsided once that styloid was gone. Insomnia is a common ES symptoms whether because of pain, pressure, or breathing difficulty as you’re experiencing. I feel confident in saying that having your styloids removed will likely reduce or remove most if not all the symptoms you’ve mentioned.
The cranial nerves (not in numerical order) that can be affected by ES are the facial, trigeminal, glossopharyngeal, hypoglossal, vagus, spinal accessory & possibly the vestibulocochlear. There is a fantastic series of YouTube videos called Two Minute Neuroscience with one video for each of the cranial nerves. I highly recommend you watch those that cover these nerves. To get you started:
You can also use the search tool to search ES Information. This will bring up a series of posts written by @Jules which are quite comprehensive & there are a couple that deal specifically with symptoms. She backs up her information w/ research articles.
I’m not sure if there’s a research paper that notes your specific group of symptoms as being related to ES because there are so many variations on the ES symptoms theme, however, there are likely papers that mention at least some of your symptoms. I’ll try to make time in the next few days to look through our research paper titles to see if I can find a couple that might be helpful for you.
@trl1964 - I need to add that the trend you notice of symptoms worsening later in the day is common & probably stems from being up & active all day. Moving your head around, moves the styloids so they come in greater contact with the nerves they’re irritating than when you’re at rest, & so symptoms flare.
A note re: your telehealth appt w/ Dr. Samji: He will likely be dismissive of some of your symptoms being caused by ES - even some of the ones that are most bothersome to you. DO NOT be put off by this. The proof shows up after styloids are removed & those symptoms either reduce, disappear or remain. No doctor is able to definitively tell a patient w/ ES what symptoms are for certain related & which are not (within reason i.e. foot pain is most likely not an ES symptom ).
In my personal experience, and almost 8 year journey, to be diagnosed, I have found the EMTs are usually not the right people to talk to you about internal jugular vein compression. Skull base surgical specialists are typically more informed on IJV compression than an ENT. I had 3 of them tell me mine wasn’t compressed. Turns out it was 75% compressed! Perhaps my personal journey can help you. https://youtube.com/playlist?list=PLDwVJNRirnK8mPfQw4ugn1vQjTqH3NUqm&si=pxliVBHplz-rAhZB
@trl1964 - In addition to the previous info I posted, I also agree w/ @Barrootz, but you’ll need to get an opinion from Dr. Hepworth &/or Dr. Costantino when he returns to his practice. Dr. Fargen is also in NC & would be a good resource if he’s taking new patients.
I am open to the possibility that I have IJV compression and open to consulting with other doctors. But I did have a CTA (including in the position that causes me more pain) reviewed by a radiologist and a surgeon who specializes in skull base surgery—Dr. Prussin, who walked me through the images (of the SP and C1 and TP), which seemed to show that there was no compression of IJV or CA.
I can get images and try to upload them here, and would be open to your input. But I’m curious why you think my symptoms may be indicative of compression rather than just regular ES (or something else).
I suppose I can just have my styloids removed and see if my symptoms are relieved. But isn’t this a pretty serious surgery to have without more confidence that it will help with my most serious symptoms? What makes you confident that I would see that kind of outcome from surgery?
I really really want that to be true! I just don’t want to jump into this kind of surgery without at least a reasonable assurance of a positive outcome.
@Isaiah_40_31 which symptoms will Dr. Samji likely dismiss? And is there good evidence that such symptoms are caused by ES?
I sure hope you get answers soon.
As for IJV there’s a lot more than just styloids and c1 transverse process that can cause compression.
Digastric muscle, and sometimes nerves, or even an artery (in my case) can cause severe compression. CTV with contrast really shows the picture when input into a 3d viewer.
I’m not convinced one way or the other regarding whether you have IJV compression or not, @trl1964. When you mentioned the nasopharynx issue, especially the feeling that you have significant inflammation there, it made sense to me that your dizziness, etc., could be stemming from that. The trigeminal nerve can cause similar symptoms to IJV compression when it’s irritated. Since the NP is innervated by what I consider the big three cranial nerves (vagus, glossopharyngeal, & trigeminal - those most often irritated by ES), I firmly believe getting your styloids removed WILL give you substantial symptoms relief, & I think that’s a good place to start.
@Isaiah_40_31 I’m circling back to this in anticipation of my telemed with Dr. Samji this Friday.
I’m wondering about what you said about having my styloids removed as a good place to start.
In light of my symptoms and based on what was said earlier in this thread, would it be even better for me to try to rule out some kind of vascular compression before having my styloids removed? Or, since nasopharyngeal pain is one of my main issues, are my symptoms inconsistent with the compression theory (and more indicative of nerve issues)? (Maybe that’s what you meant when you said styloidectomy would be a good place to start.)
If I want to pursue the vascular compression issue, what would be the best path for doing that given that the radiologist and skull-based surgeon reviewed my CTA and said they saw no evidence of compression?
I don’t have the images but I can get them. Should I do so and upload them here? Or do I need to find a specialist in vascular ES?
I based my comment about styloidectomy being a good place to start on the fact your dominant symptoms are nasopharyngeal. I believe you could get good resolution of your symptoms from styloidectomy(ies) alone.
Your potential vascular compression symptoms aren’t as distinct as for other of our members so I question if those symptoms have a vascular or nerve basis. That said, history on our forum dictates that a doctor/radiologist’s standard for judging what is a compressed vascular tissue vs what isn’t can vary dramatically. Uploading your scans here could be helpful as some of our more CT knowledgeable
members could comment. Be sure to upload your scans to dicomlibrary.com first so they’re anonymized before you post them.
Dr. Samji said that “radiographically” I am “as good of a candidate” for surgery as he has seen. He measured my styloids at 4 cm—“several standard deviations away from the average.” Even more significant, in his view, was the “thickness” and “inward angle” of my styloids, which both suggest an increased likelihood that the styloids are interfering with the glossopharyngeal nerve and the “nerve plexus on the carotid artery where a bunch of sensory nerves connect and where the vagus nerve connects.”
In Dr. Samji’s view, “all of my symptoms are consistent with the patients” he “has operated on that have been successful.”
We scheduled my surgery for January 15. I am dealing with a lot of pain, fatigue, and dizziness, so I wish my surgery were sooner. But I’m feeling optimistic.
).
