Surgeon changing mind on diagnosis

Last year I finally went to have external surgery, any way long story short I woke up to find that he operated on my hydloid to remove the ligament and calcification on back of hyloid that was causing a lump on the back of my throat. This did improve things but not the pain in ears and neck and shoulder pain. Any way much polite disagreement on if he should have he has sent me for an MRI and now says he doesnt think it eagles.
When pushed he thinks its myalgia type pain and that when doing surgery the ligament wasn’t solid. That it can look elongated on CT when it isnt.
I have pain going from my ear to throat, pain in neck and left shoulder and right ear pain. I am not sure what myalgia symptons he thinks I have . Is this a reasonable diagnosis of not being eagles.
His diagnosis of not being ES seems to be based on doing surgery o hyloid and decision to operated on hyloid was because it may impact facial nerves.
He has offerd 2nd opinion of another ent consultant but feel this would be waste of time as he hasnt done ES surgery either and would have same concerns over facial nerves.
What surgeon would be best Ent or maxi facial?

It all sounds quite strange! In our experience the ligaments/ styloid processes are usually longer than they appear on a CT, not shorter! Just because the ligament wasn’t totally solid, doesn’t mean it can’t have areas of calcification further up which can compress or irritate nerves. Certainly the pains you describe can all be attributed to ES as well as other things, * don’t see how he could definitely rule out ES based on what you’ve said.
I agree that a 2nd opinion from an ENT who hasn’t heard of ES may well be a waste of time; we usually suggest an ENT or a skull base surgeon/ otolaryngologist, otherwise a head and neck surgeon may be a good bet.
Do you have any images from your CT before surgery? It would be helpful to see them, & if there’s any chance of getting a referral for a new CT to see what was done during your surgery that would be good, although obviously health care is difficult right now!
Mr Currie is the only surgeon that we know of in Scotland; have you seen him?

Thanks. I ve asked for a second opinion now and have one, unfortunately within the same dept and not sure of the new consultants experience in ES. As you say not many in Scotland do.

On the waiting list for MRI which hopefully will give more clarity but in the meantime I need to be much clearer on experience of surgeon before going through this again.
Havent been able to get a referral to Mr Currie but have now gone back to GP who is very supportive of getting a second opinion.
Thanks again for your input


So did this doc NOT removed the elongated styloid when he should have? I assume that was evident on the CT scan that led you to the original ES diagnosis? YOU should have had a CT scan of the neck that would have supported ES diagnosis and surgery, not an MRI. Did he not do a CT scan? CT is “gold standard” for diagnosing ES. If not, what was the basis of his ES diagnosis in the first place? Something seems off here. Sound like your ENT was not experienced in doing ES surgeries. There is always a known risk of damaging facial nerves but in the hands of an experienced ES surgeon, the likelihood is low.

I would get copies of all records, chart notes and “operative” report. Do you have a copy of the CT scan that shows your styloids and calcifications? If you can post scan, one of our more experienced readers review, it my be helpful.

I wouldn’t waste my time go to an ENT that has no knowledge of Eagles or that he is friends with.

Having has this same pain paths of you, I will share I had ES surgery in 2020 and still struggling with neck/shoulder/arm pain. I particularly started with shooting pain from my throat to my ear back in 2020. Since I am still struggling and getting further workups, I know I have neck instability, some mild osteoarthritis in neck and diagnosed with Thoracic Outlet Syndrome. I am suspecting now that the scalenes that start at the base of the neck may be a culprit in this ear pain.

IN the short-term, I suggest getting some regular massage, acupuncture or dry needling in the neck and shoulders to see if you get some short term relief. I hope that helps.

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@low - We have member (can’t remember which one) who said her ES surgeon told her that calcified stylohyoid ligaments aren’t always solid. This isn’t obvious until the surgeon goes in to remove them & finds a sort of thick liquidy situation instead of bone though both look the same on a CT scan. I don’t understand quite how this happens, but your surgeon isn’t the first one to note that. It would seem that in your case your ligament must have been solid since he was able to remove it. I would expect that your styloid is too. He should have pursued that as long as he had you in the OR. I think you’re right to continue to pursue a diagnosis one way or the other re: ES.

Hi, maybe visit to one of the UK EnT experts near london is needed? So you get a clear diagnosis on ES? Hope you find a solution. D