Where do I start! For the last couple of weeks I’ve been having recurrent throat pain only on the right (extreme discomfort when swallowing/eating), pain in my ear and general jaw pain. I had a tonsillectomy last year in August. I’ve had issues with my TMJ and surrounding muscles for several years but it hasn’t bothered me like this before.
For context also I’ve had orthodontic braces for the last 6 months and my bite has shifted significantly. I thought that my pain could be as a result of this / not being able to wear a retainer at night for any TMJ issues.
I presented to my treating ENT (she did my tonsillectomy) and she floated the idea of eagle syndrome. I then got a CT which demonstrated elongated styloid on the right side (3.3cm). My ENT has not diagnosed me yet, but has also sent me for an MRI of my TMJ, the results of which I do not have yet.
I am a bit at a loss. I know I don’t have a diagnosis formally yet but I highly suspect eagle. I can feel a hard lump when I extend my neck, right near the angle of my mandible. It feels almost like a muscular knot - could this be my styloid?? This area is also very tender and sore.
how many of you got surgery very soon after diagnosis? I really just would want to have this surgically fixed to get it done and over with!
also has masseter Botox helped anyone with some of the referred pain? I am going on a trip soon and really want a quick solution for the pain
@cool-man-murphy-dan - Welcome to our forum! Your post was great. It didn’t seem like rambling to me.
Based on your radiology report, I’d say your symptoms sound pretty certainly related to your right styloid even though your left one is noted to be “larger than the right”. I take that to mean that even though it’s shorter, it’s thicker or somehow different in appearance making it look more significant.
We’ve learned here that it’s not always the length of a styloid that can cause it to be symptomatic. How thick, curved, pointed, twisted, the angle of growth & other physical features can cause a styloid to create terrible symptoms even if it’s not elongated. Perhaps length is playing into the symptoms your right one is causing, though, since that’s the side that’s bothering you.
I have concerns about the note that you have some narrowing of your IJVs at the level of C1 w/ collaterals. Collateral veins develop as “helper veins” when the IJVs aren’t efficiently draining deoxygenated blood from the brain. When compression is mild (as noted for you), collaterals are generally not present. They show up when compression is more severe. Interestingly, you didn’t mention any symptoms that suggest you have IJV compression so yours may be mild enough it’s not bothering you at this time.
That’s exactly where I could feel my styloid! It was painful when I poked it & radiated pain down the front of my neck. That’s what led to me find out what the lump was & get my ES diagnosis.
Since you already have bothersome symptoms, getting your styloid resected sooner than later will keep it from getting longer & causing further IJV compression + additional symptoms. It might be a thought to consider getting both done eventually since both sides are noted as causing vascular compression which may get worse over time.
Below are a couple of discussions where masseter Botox is mentioned as not being helpful. Some of our members have had temporary pain relief by getting an ultrasound guided injection of lidocaine & cortisone into the tonsil area of the throat. Unfortunately, this doesn’t help everyone, & for a few people, it made their symptoms worse. It might be worth a try to help you be more comfy for your vacation.
I’m scared that my ENT is not going to consider my symptoms ‘enough’ to get surgery. again I want to get this over with and I’m not keen on taking pain meds long term… I also am not sure if she’s ever even done the procedure. Should I ask for a referral to someone with knowledge of eagle?
Also, is a script for prednisone steroids tablets enough to keep the pain at bay during my trip? I was hoping that Botox in my masseter would help with any clenching pain and would hopefully reduce some of the pain associated with the styloid?
Prednisone might be very helpful. If you get bad side effects from prednisone, try getting an Rx for dexamethasone as it has less side effects than prednisone & works just as well. Maybe you could do a trial w/ the dex to make sure it works for you. I am a monster on prednisone & can’t sleep to boot. With dex, the only side effect I got was not sleeping as well, but it wasn’t as bad as prednisone in that arena.
These are the doctors we have on our Doctors List in your area. Prof. Elliott is VERY experienced w/ ES surgeries & especially with doing those for people w/ IJV compression. He often operates w/ Dr. Rao & possibly Dr. Allen. I can’t recall anything about Dr. Salmon or Prof. Novakoviz, but you can use the magnifying glass search tool at the top right of this page to search for posts about them on our forum. I’d say based on the couple of our forum members who didn’t get good results w/ botox in their masseter muscles that an oral steroid might be a better solution for your pain management during your vacation.
•A/Prof Michael Elliott, ENT, Unit 211/300 Pacific Hwy, Crows Nest NSW 2065.
ph# +61 2 8355 7940 [Operates at Royal Prince Alfred Hospital/ or Concord/ or privately at The Mater(?) with Dr Michael Halmagyi or Dr. Rao (Neurolosurgeons) and Dr Jeff Parker (Radiologist)]
•Dr. Prashanth Rao https://www.brainandspinesurgery.com.au (operated w/ Prof. Michael Elliott on one member who needed a C-1 shave for IJV decompression)
*Dr Rodney Allan, neurosurgeon, Sydney, NSW, (Possibly does C1 process along with Prof Michael Elliott)
Thanks again SO much. I actually just called Dr Elliot’s rooms.
I’m just a bit freaked out that he might not take me seriously and not want to do the procedure. I really don’t want to be brushed off because I’m scared this is going to get worse… Is there anything I should say or do in order to be taken seriously and to be properly considered for surgery?
I think it’s worth you trying steroids before your holiday for sure, and then explore the surgery option.
If you’ve not looked at the section about common symptoms, have a read, as there might be other ones you’ve not realised were possibly ES: ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Hopefully Dr Elliot will be able to see the IJV compression himself, if you do have any vascular symptoms then mention those- if you don’t & you do get to speak to him, you could explain that at the moment it seems your collateral veins are coping with the restricted blood flow in the IJVs, and that you’re concerned it will get to a point where they don’t and that you want to have surgery before you get to the point of feeling really ill? Maybe read up on IJV compression so you understand what it can cause, maybe look at this info from one of the experienced VES doctors: A Review Of IJV Compression by Dr Aghayev - General / Research Papers - Living with Eagle
It’s difficult, as often members who have surgery have had alot of pain & often for years before getting surgery, my personal opinion is that the longer you have pain from styloid processes irritating nerves, the chance is that maybe those nerves could be permanently damaged? So that’s something you could ask?
There are some risks with the surgery, so it shouldn’t be undertaken lightly, & a good idea for you to read up on that as well: ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Hope this is helpful & you can get an appointment with Dr Elliot soon!
Hey Jules, thank you so much for your help. In your opinion, based on my scan and symptoms, is it likely that Dr Elliot (or any doctor) will diagnose me with eagles? I know you might not be able to answer but really it seems to all fit in with eagles to me. As I’ve said I would just want to get it surgically fixed asap. I feel for the people that have been misdiagnosed etc for years, that’s absolutely terrifying.
I suppose regarding vascular symptoms - I sometimes get lightheaded, dizzy, super fatigued during workouts and during the day randomly and I tend to get migraines. Is there any chance it’s all related? I thought it would only be throat/ear/jaw issues
Yes it could all be related. @Jules and @Isaiah_40_31 are well versed on how the nerves, veins and surrounding structures etc., can contribute to these symptoms when compressed or irritated.
Lightheadedness and dizziness can be vascular symptoms, yes, and fatigue. Migraines can be symptoms with either the vascular or classic sorts of ES… You do have an elongated styloid process one side, not sure what exactly the radiologist means by a ‘prominent’ left sided styloid, but given the report, that some IJV compression is noted and your symptoms then I would hope that Dr Elliott would agree with an ES diagnosis.
Update: dr Elliot is available at the earliest in July/august I suppose I sound a bit silly complaining about having symptoms for a month when people have lived with this for years…
It doesn’t sound silly, it is painful, life altering and it is warranted to want it addressed asap. I am glad you didn’t have to live with it for years not know what was going on.
I just did a search & didn’t find a post that mentioned Prof. Mukherjee on our forum. As far as I know, Prof. Elliott is one of the only surgeons in AU who does styloidectomies & IJV decompressions.
Unfortunately, as ES is becoming more well known & more often diagnosed, wait times to see surgeons who are experience w/ ES surgeries are getting longer & longer. At least you don’t have to worry about an appt. w/ Prof Elliott interfering with your travel plans.
Ill pop in real quick and make a few comments/suggestions: you may want to ask orthodontist to slow your brace tightening down if you feel that is causing the pain. I have TMJ and was actually suggested I had Eagles by the neurologist who was giving botox in my jaw, temples, etc. It does help me. I do have severe osteoarthritis in my jaw which complicates things pain wise. Dexamethazone did help me initially when all this first kicked up and I had severe shooting pain in my neck to my ear. I do suggest you get a CTV (CT Venogram with / without contrast) and get the disk and try and upload it so some here can review it or can help you do that your self and look at it in 3D
