So glad I know what it is now but what's the next step?

Hi all.
Hope you don’t mind but after reading this site I decided to push for help. I’m a 40 years old male, from London UK, around 7-8 years ago this all started, nearly suddenly if I recall, lots of suffering including pains on left side of neck from jaw up to ear, pain at back of neck, inflammation on left side of neck (that stayed inflamed), harder and more hurtful Adam’s apple, occasional feeling of possible foreign object in left side of neck, swallowing has become harder, white spit/mucus seems more pronounced and thicker, occasional vertigo, some pressure in ear too. What was worse was the feeling tired all the time, especially in the mornings and was getting worse, first took half an hour to feel awake, then as the hers went by even after a few hours of being awake still had no energy to get up. Noticed this affected and gave me a lack of concentration, feeling that I have much less energy since this all started causing some anxiety and depression and stress too.

I went to see so many doctors over the years, general, ent, did tests like MRI and ultrasound. One doctor told me I’m getting old and it’s all in my mind and learn to live with it. That stopped me getting help for the last 2 year but I suffered so much, not even knowing what’s wrong with me made it worse.

So I decided enough is enough, saw some more doctors, and a nice neurologist suggested multiple tests one after another, and the last test, a CT Scan (3D or something), made him call me and say he thinks he found my issues but as he didn’t specialise he couldn’t help me further but wished me good luck. He wrote to my Gp and a copy to me, as following. “CT of temporal bones and Skull base has shown elongated and partly disjointed calcified styloid processes bilaterally, and in my opinion without diagnosing, this ‘may’ be the cause of the many discomforts this gentleman has been having for many years”.

Question is, does this sound like Eagle Sydrome and if so does bilaterally mean I have it in both sides even though my left side feels bad? My GP said he’s happy to next recommend me to whoever I want to see next (and I have private medical) but said that the next step is up to me.

What should I do next? I feel comforted in knowing this all, but I don’t have access to the CT, maybe I should get a copy, as don’t know the length of this styloid, and have no idea what my next step should be.

Any help would be great. I need some more comfort :slight_smile:

It does sound like it could well be ES- you have the classic symptoms. The length isn’t always important, it’s the angle which the styloid processes are growing at which can give symptoms. Not all doctors are too concerned with what lengths the SP’s are before surgery- mine were never measured beforehand. A lot of people have bilateral elongated styloids, but only have symptoms one side. (A word of warning though- having surgery on the affected side can sometimes seem to affect the other side and set that off!) Some members have had both sides operated on at once, but a lot of doctors don’t like to do that as there would be too much swelling. A 6 month wait between ops seems to be what several doctors prefer)
It’s interesting to get a copy of a CT, and different doctors have different protocols for it. Given that the report you have states that they’re elongated, I wouldn’t worry too much as if you get referred to another UK doctor they can request the CT results. You may need a CT with contrast to be done as well, as this shows if any of the blood vessels in the neck are compressed. But it’s best to wait and see about whether whoever you’re referred to wants to get that done, as I know when I saw Mr Axon at Addenbrooks he wanted that done at Addenbrooks and wasn’t happy for it to be done at my local hospital.
It’s worth having a look at the doctors list in the doctors Info section- I’m not sure if there’s any in London, there’s a Mr Corbridge on there in Reading (and he works for Circle healthcare as well, I think), but Mr Axon is the most experienced if you’re okay to travel.

Hi :slight_smile: it sounds like ES! I too have it bilaterally and do have pain on both sides but one side is predominately worse. I’ve been diaganosed with ES and have near the exact same symptoms so its very likely it is for you. Is there maybe a ENT doctor near by? Maybe they could be your next point of contact? Or as well as jules said maybe take a look at the doctors list on here.
Glad you’re finally getting answers after 7-8 years