I have a burning, swollen-feeling throat, globus, and some difficulty swallowing. I had a consultation with Dr. Samji who felt like removing my styloids may very well relieve my pain.
I also met with a local surgeon today who is on the Eagles list. He felt like my styloids weren’t terribly long (3.1 and 3.5) and likely weren’t causing my symptoms. Rather, he felt like dryness along the lines of sjogrens is the problem. I have mild lupus, and sjogrens is often associated with lupus. I have mild dryness in my eyes and maybe in my mouth when I talk a lot, but it’s not intense. My throat pain is much more intense.
Part of me feels like the sjogrens theory might be true. It would explain why my symptoms are not one sided. My throat symptoms also came on within a couple years of my lupus symptoms (joint pain). The issue is that there doesn’t seem to be a ton I can do about it aside from drinking plenty of water. However, Eagles could definitely be a cause of my throat burning as well. If it is the cause, surgery might actually solve the problem and I could go on with life. I hate that it seems the only way to know is to have surgery. I wish the decision was easier.
I’ve been dealing with burning throat pre & post op. Post op it covers less territory but is still very present. I also have what feels like a lump pressing on the side of my throat. Not quite a globus feel but similar. This I understand is likely a result of my glossopharyngeal nerve being irritated and will take months to heal/chill out. So, I sit here and wait and hope!
I don’t know much at all about sjogrens it really even lupus, however, as I understand, Samji is the best of the best. If you have any concerns on the other ailments perhaps ask his opinion on them and see what information he gives you. I’m an advocate of asking a lot of “why” questions.
What I can offer though is that my styloids measured at 3.2 and 3.5. The longer was removed and actually measured 4! Know that a CT takes images in slices so are often understating true length of the styloid. Also, my ligaments were said to be heavily calcified. All possible contributors to my pain. Time will tell for sure.
This surgery has so many unknowns for many- so no, it’s not an easy decision and sometimes taking a leap of faith is all we can do. If I were in your position, I’d go back to Samji and present these other thoughts and see why he does or doesn’t think they’re the culprit. He’s an excellent surgeon from what we know!
I just messaged Dr. Samji to see what he thinks. He did mention that he thought the radiologist undermeasured my styloids.
If I try surgery and it doesn’t help, I think I’d still be glad I tried. Otherwise, I’d be left wondering. I just don’t want to be worse off after surgery. I think that’s rare but possible.
@Tjmhawk01 I think you are right that at some point you have to trust your gut and give something a try. My personality likes more predictability and less risk, but that may just not be an option right now.
Ladybug, I can SO relate to your last statement. That’s me too! But you’re doing everything right and making the best possible case for yourself!
Keep up the good work, my friend!
I had a dry mouth at night for about 3-4 months. I kind of rotate through different autoimmune type symptoms. It was so dry that it was difficult to sleep until I started using tablets that dissolve in your mouth overnight. I also had a period that felt like my throat was tight. It’s hard for me to say what your issue is related to but my experience is that it could be a possibility.
I have Sjogren’s symptoms too, dry mouth & dry eyes. I just use sipping water to help with the mouth & Xailin eye drops for my eyes, I didn’t want to go through all the testing, lip biopsy etc when things are manageable. These symptoms have been mentioned by a few members- I don’t know if it’s related to ES but my symptoms came on at the same time as the ES ones flared up worse; could the inflammation have triggered an autoimmune response, or could the nerves damaged by styloid compression have caused the dryness, I don’t know, but it feels connected! My ‘dry’ symptoms haven’t gone after surgery but haven’t worsened either…
If it is autoimmune with you, personally I think removing the possibility of inflammation in the area caused by the styloids might stop it getting worse, & if it is nerve irritation causing the dryness then equally removing the styloids will help! The surgery should also help your globus sensation & difficulty swallowing with time too…Plus as @Tjmhawk01 says, the styloids are often underestimated so members regularly report that they’re found to be longer than measured.
I hope this helps a bit, it’s understandable to have doubts before surgery, we’ve all been there!
Thank you for your input, everyone. It’s so nice to have a place to leave my thoughts. Goodness knows those close to me get an earful more than they probably want!
If I had to rate my mouth and eye dryness on a scale of 1 being not bad at all and 10 being extreme pain, I’d say I’m at a 2 or 3. It’s just not a big deal. My throat burning, on the other hand is at an 8 or so. It’s a daily struggle. It just seems like if dryness were causing my throat pain, I’d have more intense dryness elsewhere.
The awful throat burning/pain is a very typical ES symptom. It really sounds to me (not a doctor) like the dryness is a symptom of ES & is not actually Sjogren’s. We’ve had a number of members who’ve experienced mouth &/or eye dryness that resolved after ES surgery. I have a friend who does have Sjogren’s, & she’s pretty miserable. I’m glad your dryness symptoms are not at the forefront of your symptoms as that may make your decision to proceed w/ surgery easier.
What causes dryness in Eagles syndrome? Just tissue inflammation?
The Sublingual and Submandibular glands are supplied by the Facial Nerve (7th Cranial Nerve); the Parotid gland is supplied by the Glossopharyngeal Nerve (9th Cranial Nerve) . (Dry Mouth - physiopedia.com)
Those are the major salivary glands but there are hundreds more that are minor.
Since the facial & glossopharyngeal nerve are two key players in ES symptoms, it makes sense that a dry mouth could be a symptom of ES.
It’s common to have dry eyes too; the Trigeminal nerve innervates the lacrimal glands, via the Opthalmic nerve, which produce moisture for the eyes, & as the TN is commonly affected it’s possible this symptom could be ES related.