Have your symptoms got worse gradually?

Hi everyone, i wanted to ask you guys about your symptoms. did it gradually got worse? and over what period of time?
I’m trying to figure out if to have the surgery or not. i have been feeling better the past 2 weeks, pain i can live with, and some days i feel good trough the whole day. i still feel its there but with no pain.
but from i read hear i see people are in a lot of pain, how long before you decided to have the surgery? and do you guys have days that you feel nothing at all?
Thank you all, i don’t know what i would do without this site

Hi Julie,

My symptoms were really bad 3 years ago and went through all the ENT route and had a CT scan with contrast and was told they were not that long, even though I have a pointy bone poking through into my throat and into my tonsil which really hurts my ear if i press it, the consultant wasnt interested and suggested i have amytriptiline which I think helped when i was on it so i just sort of lived with it… I stopped the amytriptiline and although the weird swallowing remained, the pain wasn’t really there for a few years really, now it is back with a vengeance which leaves me wondering if it also involves muscle spasms like if muscles get tight and pull on neck structrures it pulls the bone more into your throat… not sure really but mine has definitely now resurfaced. I’d like to add that i’m not a diagnosed eagle sufferer as they stated my styloids were not that long. Day to day at the moment my symptoms can be worse and better, mine tend to worsen through the day i find.

I found ways to manage the pain- trying to sleep at night was a pig problem, but sleeping propped up did help (suggested to me on here), & then amitriptyline helped, so it was bearable and not worth the potential risk of surgery. But then mine suddenly worsened, & I started to get vascular symptoms which were horrible and scary. The only thing I can put the new symptoms down to was doing alot of cycling, which I think caused a prolapsed disc in my neck. Maybe that was enough to shift the position of the styloids a fraction & compress the jugular veins both sides, that’s what I think. So I was feeling really ill, & then the decision to have surgery was a no brainer! I was lucky, & found out about a brilliant surgeon on here who was near enough, & had 1st surgery in 2015, 2nd in 2016, & feel tons better!

Thank you smithy, i hope you’ll have more days with no pain. feel better!

Hi Smithy,
Two comments, the first is that even if your styloids aren’t elongated, if one or both are extra thick or curved at an odd angle, you can still get ES symptoms. Additionally, your styloids can be normal length but your stylohyoid ligaments can be calcified partially (or fully) & that can also cause ES symptoms (& is considered to be ES). Second, since it’s been 3 years since you had a CT scan to check for ES, you might want to get an updated one. Styloids can grow & change over time. There is a good ES surgeon - Mr. Axon - in Cambridge who it might be worth your time to consult with this time around if that’s not who you saw last time.

Hi Julie,
I had symptoms that came and went. I had great days & terrible days but over time my great days became bad days & my bad days became unbearable. As in Jules case, I also began to experience vascular symptoms when I exercised. I guess the answer to your question is, if you can live & function normally with your current symptoms then no need for surgery yet. If or when your symptoms impact your ability to function normally then it’s time to consider surgery.

thank you isaiah for your advice. i think that’s what i’ll do.
can i ask over what period of time did it get worse for you?

My ES progress was pretty short-term. I had pain in my neck & felt a lump under my jaw in July of 2014; was sent to an ENT in Sept. & diagnosed w/ bilateral ES. Went to a second ENT for second opinion in Oct. & had surgery end of Nov. Between Oct. & Nov. my vascular symptoms started but were caused by my less symptomatic side thus my surgeon took care of that side first. My second surgery was scheduled for May 2015, but I had a terrible bicycle accident the week before w/ a head injury which put surgery off till Aug. 2015. It was an excruciating 3 month wait as my ES pain & symptoms got worse daily. I’m 95% better now and am so thankful!

Wow so it was pretty fast for you. im happy to hear you’re feeling good now days! thank you

We are each different. Some people have symptoms for years that they can live with before things get so bad they consider surgery & others like me have a quick onset of symptoms & then things progress more rapidly. I hope your symptoms stay at a tolerable level for a long time, Julie!

i hope so too (: thanks isaiah have a great weekend!

You, too, Julie!