Thank you all for creating this space. I was just diagnosed late last week with bilateral ES. The styloids are each more than 4cm long. I am kind of in shock and starting to do more research and try to find specialists in my area (the Canada subgroup has been helpful!).
I had a terrible earache and pain very localized to one spot in my tonsil/throat for about three months that caused me to go to the doctor and eventually get a CT scan, which confirmed the diagnosis.
In 2017, I had a scary episode of turning my head too fast and fainting on the street, also losing bladder control when I passed out. I had many neuro tests at the time but it never led to a diagnosis, after suspecting MS and other things. My doctor now suspects it could have been ES that caused this incident.
I suffer from periodic migraines, especially when the barometric pressure changes. I also have very bad neck pain on the right side from time to time, which radiates into my shoulder and down my arm/hand. I always thought was posture-related or sleep positioning, but now realize was probably ES all along.
I get ‘zaps’ in my right ear/face from time to time, which also may be related to ES as well as pain in the eye socket and nose bridge on the right side. I am pretty sad to realize that this is a long-term condition with no real cure but surgery, which is hard to find in my region (and sounds quite terrifying from the stories here…).
I’d love your thoughts on:
whether the length of the styloid is related to worsening symptoms,
whether others who have bilateral ES also have experienced problems on one side only,
what kinds of non-surgical remedies have provided pain relief,
whether barometric pressure has an impact on your pain levels, and
what questions to ask a specialist (particular around tests for vascular issues)
So sorry that it’s taken you so long to get a diagnosis! Sadly not uncommon here
Your symptoms could all possibly be caused by ES- there’s more detailed info in the Newbies Guide Section about possible explanations if you’ve not seen it, & @Isaiah_40_31 found ‘2 minute Neuroscience’ clips on YouTube which details different cranial nerves, they’re helpful too.
The styloid length can definitely cause more symptoms, & if it continues to grow then it can bring the styloid into contact with different nerves &/ or blood vessels. Often the styloids grow at an angle too, so this can cause them to poke & irritate the nerves. Symptoms can worsen as we age too- it’s thought that as the connective tissue weakens with age iy can be enough to shift the styloid’s position enough to increase symptoms. The neck is a very cramped space with many nerves & blood vessels, so even a millimetre or two shift can be enough to irritate nerves.
Some members have had symptoms one side only even with elongated styloids bilaterally. But after surgery it can sometimes cause the other side to play up & it seems to be quite common for this to happen.
There’s info again in the Newbies Guide Section about pain relief options- basically ice or heat can help, there are nerve pain meds like Gabapention, Amitriptyline or Carbamazepine (which could well be worth trying for the zaps of pain you experience). Muscle relaxers like Baclofen sometimes help, & some members have been able to get Lidocaine patches too. A doctor can do a Lidocaine/ steroid injection into the area, this has mixed results, but could be worth trying if you have a long wait for surgery… Sleeping propped up a bit can help too. There have been some discussions about seeing chiropractors or physiotherapy- it has helped some people but you need to be very careful as it could make the pain worse & cause alot of damage if someone doesn’t have experience with ES.
Barometric pressure definitely alters symptoms- again it’s been mentioned in past discussions so you could search for that.
If you think you may have vascular ES- & fainting is possibly an indication that it could be, then a CT with contrast should show if blood vessels are compressed, especially if you could get a CT done with your head in the position which caused you to faint.
The surgery isn’t a walk in the park, but is usually successful- most members go through surgery twice to get both sides done, so that should tell you it’s worth getting done! I had mine both removed a year apart & the surgery wasn’t as bad as I thought, the results have been really good for me as I was feeling very ill with bilateral jugular compression.
I hope this helps, & maybe have a read of this topic: Surgery for Eagles is usually successful! - General - Living with Eagle
@Jules gave you a very thorough answer. The only thing I’d like to add is that surgery doesn’t guarantee that your symptoms will go away completely, but what we’ve learned over the years here is that, in most cases, symptoms often completely resolve or reduce enough for the patient to return to a normal lifestyle.
Some members with vascular compression have needed additional treatment to help the vascular tissue remain open, & a few have needed to take a low dose nerve pain med. on an ongoing basis to help tame residual nerve pain.
Thank you all so much. I hadn’t even realized there was a Newbie Guide - I’m reading that section in detail! You’ve really put together a lot of amazing info for us, thank you!
