Hi Jules, thanks for the warm welcome,
This is my situation. I have unresolved ear pain, ear fullness and a constant headache. I was diagnosed with ES last year after a CT scan showed long and calcified Styloids on both sides. I was then referred to an ENT surgeon for possible surgery. Went in for intra-oral surgery on 26th May this year. The surgeon said I was lucky to have him as he had done 18 styloidectomies and most ENT surgeons haven’t done any. He removed my Tonsils and explored the Styloids but then aborted the operation because of the risks of damaging major arteries and nerves. The pain and recovery after the op was horrendous and all for nothing. Originally the surgeon said he would probably have another go, but next time going in through my neck. Since then the Surgeon now has doubts about whether the op will solve my pain issues and so he now doesn’t want to do any more surgery at all because of the risks. He still thinks I have ES but He has offered nothing about how to manage my pain. I asked him if he could do a Glossopharangeal nerve block and he said he would have to think about it. I am now waiting for another appointment with him, but I feel he is going to discharge me. I think I am going to have to see someone else. I am open to the fact that my ES might not be the cause of my pain, but until I have the op I will never know. My pain is becoming unbearable and stops me doing most things. I am wandering if a Glossopharangeal nerve block might help to establish if the ES is the cause of all my pain ?.
If anybody has any advice about UK surgeons possibly in the West Midlands area, or anything else to do with ES then I would be very grateful . Thanks for reading my post. Sparky
Hi Jules, thanks for the warm welcome,
Hopefully Jules will respond shortly about a UK surgeon as she is on that side of the pond. I think a Dr. Axon is well regarded but I dont recall exactly where he is.
I think your original surgeon was not experienced enough to do your surgery…thus aborted when he got in too deep. This is why it is important to find a surgeon how has performed a considerable amount of these surgeries and is confident in their surgical approach and delving into delicate areas. My suggestion is to not go back to this surgeon. Seek out a neurologist who has experience in doing those kind of nerve blocks. I was able to get a variety of injections to calm down my symptoms before surgery but had to seek out right doc with experience in the neck and ear regions. I had a combo of steroids, botox and nerve blocks.
Have you tried a round of oral steroids yet? That may also calm it down if you cant get in for injections right away.
Unfortunately surgery is the usual fix for Eagles. You didn’t mention the lengths of your styloids.
I think you just need to find the right doctor(s) and had the misfortune of going to an inexperienced one. You are in the right place to learn more about your symptoms, identify them and get to the right docs. Hang in there!
Welcome to our wonderful forum! So glad you’ve joined us! I’m so sorry to read about what you’ve gone through.
Snapple gave you great advice & Jules likely have you a bit, too, in her welcome email.
I don’t believe we have any UK doctors on our list who are in your area. Are you able to travel? As Snapple noted, Mr. Axon is by far the most experienced ES surgeon in the UK. Here is the doctors list - UK is at the bottom - Doctor Lists -- no discussion - #2 by Mod_support
You may find a someone closer to you but likely with less experience.
Some of members have gotten symptoms relief after an ultrasound guided injection of lidocaine & cortisone in the tonsillar fossa (throat) or neck. The results vary offering relief for a few hours to a few weeks. This can also indicate if your pain is coming from your styloids (which it almost certainly is).
We’re here for you all along your journey with ES - for the good days & the harder ones.
Hi, Thanks for the replies, its really helpfull to me.
I have asked my ENT doctors how long my styloids actually are but they don’t seem able to tell me. Not great is it ?. My original CT report just says " Calcified Bilateral styloid processes reaching the C2 vertebrea end plate and slightly longer on the right than left". Obviously, they must be too long though for diagnosing ES.
My surgeon seems to be very vague about it all and the last time I saw him all the Computers were down. Non of it is great. I am not very happy with him so far. The NHS where I live is not great.
Perhaps I may have to find the money somehow and go private. I am getting desperate for some relief from it all. I have been suffering now since 2014. Thanks again. (Sparky)
If your styloids go down to C2 then they’re pretty long!
I’ve replied to you pm with info about nerve pain meds if you’ve not tried them. It is really frustrating with the NHS at the moment- I don’t think it’s great anywhere in the UK! If you are considering seeing someone privately then I would see Mr Axon- he does private work at Spire Lea hospital at Cambridge. You wouldn’t want to waste your money seeing someone who doesn’t understand ES. One of our members told us that if you see a consultant privately, you can’t just do that to skip the waiting times, you have to have all the treatment with them, so I’m not sure, that would be worth checking.
The only alternative to see if it’s the styloids causing your pain is to have steroid/ lignocaine injections into the tonsillar region, sometimes under ultrasound to guide it- it’s sometime used as a diagnostic tool, and can help keep symptoms at bay. But it doesn’t always work so isn’t definitive, & I’m not sure I’d trust that ENT you’ve already seen to do it!