so happy for you…today is a bad day for me a severe migraine stomack pain womitting fatigue…please ask also for me…and ask.her how many surgeries she did and the cost …God bless you…hugs xxx
Agnes my dear I also have similar symptoms like you…that is why I want the whole ligament removed.external…I am 61 years old and this only shortened ligament can regrow back…hugs and God bless you xxx
Just thought I would post an update as I had surgery on the side that's been giving me chronic pain for the last 2 years and thought I would share my experiences.
In terms of the procedure, initially my surgeon was due to make a neck incision in the usual place. As he had never seen a case of ES before (but frequently operates in that area) I have been a bit "persistent" in my attempt to emphasise how high on the styloid I need to press in order to reproduce the pain. I believe that my nagging may have contributed to him speaking to Patrick Axon to ask his opinion (thanks for the info on this guy Jules, I didn't even name drop him). Turns out my surgeon decided to make the incision slightly further back than I was expecting to ensure he was able to remove as much as possible.
When I came round, they confirmed that 4cm of my 5cm styloid process had been excised, apparently the majority was removed in one go and the last bit was "nibbled off"... So, I now have a fairly large cut behind my ear/neck and other than having a fair amount of new neck pain and a completely numb ear, I'm actually starting to feel much better. The whole area still is really stirred up, but I sort of expected that, the numb ear is starting to feel sore and tender, which I've had before when I had an unrelated ear surgery some years ago, pretty sure this will pass as the nerve has a chance to return to normal, I think it was just a bit traumatised during the procedure, they said nothing was damaged and I just need to give it time.
Good news is the styloid is clearly gone, there's definately no bony protrusion in my mouth on one side, I'm also not feeling the usual pain that was triggered by talking, eating and moving my neck to the left. It all still feels very odd and tender but its been less than two weeks, so it could be worse.
P.S: Thanks to everyone on here who's given me advice to get this far, its got to be almost two years since I first had symptoms, just hoping I get a better quality of life after this as my stomach really isn't liking 3x 400mg of NSAID's daily in order to be able to function at work, was starting to feel pretty rubbish and had tried all other options i,e, steroid injections, painkillers etc.
I'll post another update once its healed a bit more and the steri-strips come off (as much as I'm tempted to pull them off prematurely!)
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Hi delusive! It looks pretty good. Congratulations on getting your surgery done - and getting so much of the styloid taken out! Two weeks after surgery you can still expect post-op pain, so that seems pretty normal. I hope you have continued healing - it sure sounds like everything is going in the right direction.
Thanks for posting your update, Delusive! Your op pic looks like mine did, only with a lot more steri-strips! I still have some numbness in my ear 10 months post-op, it's a bit strange-feeling but much better than having ES symptoms! Hope that things carry on healing well, and that you stay off the pain killers.
Thanks for the replies, I’m glad to hear it sounds like I’m on the right track, and that the incision looks similar to someone else’s 
Hello Delusive!
Can You please confirm where You have done the surgery and which doctor has operated You?
Are the symptoms completly gone after surgery? And if the symptoms were something as pushing on nose, soft palate or completely different - only in the throat? I'm about 8 months after first surgery (external) on the left side, and from the styloid of more than 5cm, the suregon took out only 2,2cm. I have still much pushing on my face, but have a doubt if the symptoms are for sure from ES. I'm feeling as my external carotid of the face is pressed and I'm feeling this pression al the time. Thanks a lot Agnes
Hi Agnes,
Sorry for the delayed response. I had my surgery done at Guy’s Hospital. The consultant I saw hadn’t seen ES before or heard of it really, and ended up speaking to Patrick Axon to find out what method of removal he recommended.
I had my left styloid removed externally and all the ES pain has totally gone. My Styloid was 4.9cm, they removed 4cm (I was quite insistent) so I basically have 1cm left. I was getting a rubbing, stabbing pain when I talked, moved my head or ate food. My neck is still a bit sore around the scar but I’ve been rubbing bio oil into my neck to breakdown the scar tissue and silicone to keep it hydrated, its definitely getting better all the time. Also my ear is almost totally numb, but its coming back slowly, its only been a couple of months so I reckon it should be mostly back in about a year (I had ear surgery 5 years ago for something different and had similar nerve trauma and a numb ear).
I’m waiting to have the right side done now, its no way near as bad, but since I’ve stopped taking painkillers every day I’m noticing the pain on the other side more, plus I’ve been way more active which I think is irritating it.
For me, my symptoms have always been due to the thing just digging into the surrounding tissue, each side had similar symptoms, but my left side that has now been removed must have been making the tissue where it was located red raw on a daily basis which is what I found to be most debilitating. I also had a feeling of swelling/inflammation at the back of my throat, and I had the classic “piece of bone” sticking out from behind my tonsil (which I now only have on my right… for now!) when I pressed the styloid with my finger it was VERY painful, even when I pressed quite high up, this for me was a really good indicator that it needed to come out and they needed to cut it off as high up as possible.
Good news that your surgery worked so well! And good too that the doctors are talking to each other! Could we know the name of the doctor who operated on you?
Hi Jules, I’m due to go back soon so will ask if its ok to pass on the details at my next appointment
Hi Delusive. I knows its been a long while now, so if you are still on the board or getting emails, it would be good to know how you have got on since then. Do you feel totally cured now? Also, did the incision heal properly? Would be great to see any photos of left over scarring as I am about to make my first appointment with either Mr Axon or Mr Corbridge (depending on availability and how bad external scarring can look like - yes I know that sounds silly but worried about facial appearance too) through insurance so wish to make the best possible decision. I know Mr Corbridge seems to do both external and internal while Mr Axon seems to do external (so with scarring but possibly more stylus cut out)? so it would help to know what scarring looks like after time. Thanks.
Sorry to but in, Kingdoz, but I had external surgery with Mr Axon. He does the surgery behind the eat, and then about an inch below the ear- it’s tucked into a crease in my neck both sides, so can barely be seen. (My surgeries were 18 months and 6 months ago). I wouldn’t worry about scarring at all if you have surgery with him.
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This is the right side which I had done 7 months ago. The only bit you can see really now is the cut behind the ear, and hopefully no-one except the hairdresser sees that!!
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Great picture, Jules! It should be an encouragement to anyone who fears scarring after an external ES surgery. During my external surgeries, only my neck was cut. As in your case, my surgeon cut along natural creases in my neck so the incisions are pretty invisible now that they’re completely healed.
Thank you. This is so reassuring and helpful looking good Jules
Thanks… shame about the rest of me!!
Go easy on yourself! Age takes a toll on all of us!! I mostly blame gravity!! Everything is heading toward the ground!!
Hi everyone. I have just been diagnosed with ES through dental x ray after extreme pain. So have made doctors appointment. Not sure what to do. Can anyone offer any help or point me in the right direction… Thanks in advance.
Firstly, if you’re able to read through all the info in the newbies Guide, that’s a good start- there’s info about the best scans to get diagnosed with, common symptoms, & treatments. If you’ve been brushed off, I think under the UK NHS you in some circumstances you are entitled to a second opinion, here’s a link to the official guide : https://www.nhs.uk/chq/Pages/910.aspx?CategoryID=68
If your GP is not helpful, or if you’ve seen a consultant & they’re not, then the best advice is to read up so you’re informed, plus there’s links to research articles in the Newbies Guide section- if you print off some which support your case, like symptoms which you have, how sucessful surgery is, or which scan is best to diagnose ES & take them with you to help your case. Have a plan in mind of what you’d like to do- I was told by the consultant I saw at the local hospital that they wouldn’t operate unless I was in so much pain I was suicidal, & that he wouldn’t be prepared to do it either, so I got lots of info from here, found out about a consultant at Addenbrooks in Cambridge (Mr Axon) on here, & pushed for a referral to him. The consultant was glad to get rid of me, I think, so was happy to refer me. You do have to be pushy sometimes, but if you know your stuff, it can help with confidence to be like that! & maybe take someone with you to appts. if you can to help you with that? I did mention in my message a couple of docs in your area who as far as we know have treated ES patients.
There’s also info in the Newbies Guide about treatments & pain relief, so it’d be worth having a look at that & seeing if your GP can help prescribe you something.
On the positive side, at least you have a diagnosis- some members have had to fight really hard to get that far!
Best wishes, hope this helps…
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Hi Rhona, I’m ayrshire (Killie). Can I ask, who your surgeon was, and any update ?
Thanks, R.