Hello everyone, I would be really grateful to know if anyone developed swollen lymph nodes with their ES? I have a node on the left (ES side) which is larger than the one on the right. I pointed this out to ENT consultant who felt my neck very quickly and said no problems. In the last few days it has got swollen and tender, and the whole neck on the left side feels really full and abnormal. I am being sent for another MRI scan (with contrast) on Sunday, the GP I saw today is suspicious about the lymph node. I am obviously panicking it may be cancer, but then I wondered if it is related to the styloid process because, consciously or not consciously, I have been pushing/touching the process in my tonsil area on and off, and I wonder if it has irritated things. Any advice would be much welcomed. I am a long way off getting surgery, I am possibly the world’s most miserable mummy (!) and now this potential curve ball comes along…
Absolutely! This was actually my first and chief complaint. I had PCP’s & ENT’s tell me yeah, it’s swollen but it’s ok. They’re just doing their job fighting off viruses etc. As a singer it often came with sore throat as well. But when it persisted I was of course sent for sonogram, biopsy, MRI & CT. When the CT came back with clear indication of ES all became clear. The calcified ligament is directly pushing and irritating the submandibular gland… I hope this helps. Surgery scheduled for July 8th.
Many, many people on this forum (including me) have or had issues w/ swollen glands as an ES symptom. It’s good you’re getting the scans but I suspect everything will come out normally. I believe you’re on to something in that you could have stimulated some irritation by poking around at your styloid process. Sufferingsinger has also offered good information.
Take heart! All is well!
sufferingsinger - Good to hear you have surgery upcoming. It should make a huge difference! Are you seeing someone in your home state or are you traveling for surgery?
Thank you so much for taking the time to reply. I really hope that is what is also happening to me. I don’t yet have a CT scan arranged but sounds like people don’t take you seriously until that is achieved and the complications can be visualised. I’m feeling really unwell now, quite desperate, just praying the lumps around the node just under my ear are ES related. Praying also that you get relief with your surgery. X
Swollen lymph nodes are part of my anatomy these days…I a pretty good size one on each “side” of my neck that never go away and are sometimes tender, especially the one on the right side just under my ear/behind my jaw. I also have an entire string of them on the left side of my cervical spine that stay irritated. Don’t know whether the ones in back by the cervical spine are caused by the cervical issues or the SP or both. The ones on the sides of my neck are most certainly related to ES. Hope this helps! It is quite maddening to have to wait so long for everything…we have to wait long periods of time here in the US as well, and then we have to pay!!!
Thank you, fingers crossed x
Thank you for your reply, that gives me some hope that it’s not cancer! Yes it’s awful to have such a rare condition, but as long as we all make it through, no doubt it makes us stronger in some way! You have to pay to get quick answers in the UK, I’ve so far spent £1500 on getting a “probable glossopharyngeal neuralgia (Eagle Syndrome)” on a piece of paper and a bucket load of amitriptyline.
I live inBrooklyn NY, traveling to Dr. Cognetti in Philadelphia.
@julia, I’m no Dr, but from what some Dr’s have told me, if the lymph nodes are mobile, meaning they move around when u touch them and they feel squishy you’re ok. If they feel hard and locked in one spot then it does need more checking out.
Thank you. Hard to tell really. I will wait for the MRI scan results and blood tests but it kinda sounds like (hopefully) it’s all related. I’ve had a lot of vascular activity running up by the ear, pulsatile tinnitus, tender veins etc, I’m just hoping it isn’t the node that was pushing the styloid/nerves in the first place. That would be a game changer …
Good choice, sufferingsinger! Please give us an update post op.
I had two one at back of head and one behind my ear for about a year, went out of my mind. Eventually one went down but the other persisted so I had it removed and biopsies and it was nothing. So I guess it was from ES but I know it’s a worry and the fact that your not taken seriously about it is the worst feeling. You’ll be fine.
Thank you for your support. I hope it’s nothing to worry about as it is hard enough getting help for Eagles as it is!