Was recently diagnosed with Eagles syndrome. I woke up with a sore throat in March of 2020, after CT scans showed I had tonsil stones. I had a tonsillectomy in June 2020 and then a revision in December of 2020. My CT scans show that my styloid seems normal but have had feeling of something pushing in my throat since March of 2020. The pain is constant and very little relieve it, also had ringing start. Saw a specialist ENT in Chicago at Rush and now sent me to a Neurologist I will see in September. Is it normal to have a persistent symptom or do they tend to come and go for most? It’s been really difficult going through this because nobody seems to care about trying to find source of pain.
Hi Ducker,
Welcome to our forum! Elongated styloids are not the only thing that can cause ES or ES type symptoms. We have a number of members who have/had calcified stylohyoid ligaments without elongated styloid processes. Because the stylohyoid ligament is attached from the tips of the styloid processes to the lesser horns of the hyoid bone, when they loose their flexibility due to calcification, they become tethers reducing the ability of the hyoid to move as it needs to when you talk, breathe, swallow, cough, sneeze, hiccup, sing, etc. As with elongated styloids, they can also irritate up to 6 of our 12 cranial nerves that share that area of the inner neck.
Another lesser known fact, even by doctors familiar with ES, is that it’s not always the length of the styloids that causes symptoms. A normal length styloid that’s very thick, angled, twisted or pointed can also cause ES symptoms. We’ve also learned that different radiologists & doctors have different opinions of how long the styloids need to be in order for ES to be diagnosed. In general anything longer than 2.54 cm can be considered ES though most doctors won’t diagnose it unless the styloids are 3 cm or longer. It would be worthwhile getting a second opinion on how long your styloids are by having a second medical person view your CT scan.
In case you haven’t seen our Doctors List so you can find someone in your area who knows about ES, here’s the link: https://forum.livingwitheagle.org/t/us-doctors-familiar-with-es-current-list
You may need to scroll to the top of the thread to see the list.
I hope this info helps!
It does vary whether the symptoms come or go…we have seen quite often that people have flare ups when it worsens, often for no known reason, & then they settle again, but equally some symptoms can be constant.
Nerve pain medications can help; like Gabapentin, Amitriptyline, Carbamazepine, which your Neuro could try you on, or would you be able to see your PCP/ GP before Sept? (I’m UK, GPs here can do that but not sure if yours would in the US?) Otherwise muscle relaxants like Baclofen can sometimes help, or topical lidocaine. Some ENTs will try a lidocaine/ steroid injection into the tonsillar area; it doesn’t always work & is only temporary though.
My appointment with neurologist isn’t until the end of September. I’m frustrated with treatment at this point because everything is a wait until this appointment and we will look for treatment options. Ive been to ENT for pain and he has prescribed hydrocodone, but that doesn’t help. I am waiting to get my CT scans loaded for a second opinion. In last review it was commented that I do not have elongated styloids but based on symptoms they classified it as Eagles Syndrome. I am requesting what they measure so I have a better understanding of the actual length. Since I’ve had my tonsillectomy in 2020 I’ve had varying symptoms, with the main symptom of pressure constantly in back of my throat. There is no real pain besides that pressure point and now ears constantly ringing. It’s going to be a long couple months until I can get more help.
Ducker, I’m sorry for your frustration, but have you tried getting an appointment w/ your PCP. Sometimes they are quicker to get an appt with than a specialist & your PCP should be willing to Rx a low dose of one of the medications that Jules listed. If that doesn’t work, the lidocaine patches or cream are a good option & worth trying. Sleeping with your head elevated can also help a lot & icing your neck as well (15 min. on & 45 min. off) if that increases pain, then try heat. We recommend a wedge pillow for post op recovery, but many of our members have bought them ahead of surgery & found sleeping more upright has helped reduce symptoms.
Ducker,
Do you have the radiology report? Have they told you the measurements of your styloids?
I had tonsil stones when I was younger and had my tonsils out. My daughter has them and they dont want to take out her tonsils. They dont really bother her other than having to clean them out all the time. Generally speaking they try to avoid taking tonsils out for this reason…or so I am told. Some information out there indicates alot of ES diagnosis have had tonsils out. Not sure if it is a connection.
Oxycodone didnt do much for pain for me either and Jules giving you good advice for nerve medications.You could ask PCP or ENT for an RX for oral steroids. That worked well for me. I eventually ended up getting injections of steroids, botox and lidocaine from a neurologist who did these types of injections. The steroids helped the most.
I suggest getting a copy of your CT scan on disk and the report and send to an ES expert. I don’t know where you (located in US) are or your insurance but you can usually sent CT scan to Dr. Samji in CA and get it read and have an expert opinion within 2-3 weeks. He charges $500-$600 if you dont have insurance coverage. My advise is to seek out an ENT that has significant experience in evaluating and performing surgery. It will save you months of being bounced around between docs.
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Tonsillectomy is a known cause of ES, I don’t know much about tonsil stones, only that quite a few members seem to have had them…