So I’ve posted here a couple of times a few months back. I’m yet to go down the diagnosis rabbit hole and subsequent surgery, but I’m almost certain I have ES. I have the majority of the classic symptoms, and can feel both styloids either side in my tonsil area.
I can also feel the styloid under my jaw on the left side — something I know other members here have also been able to do. Nearly all symptoms are on my left side, but I do occasionally get them on the right as well. The symptoms are as follows, and I’m a 25 year old male:
. Jaw angle pain with occipital muscle pain when doing a chin tuck
. Continuous high pitched but low volume tinnitus
. An increase in the tinnitus loudness when doing the chin tuck
. Tickling in throat/feeling something is stuck there occasionally
. Rhomboid muscle pain
. And of course, being able to physically palpate the styloids and increase the above symptoms when they’re touched.
My constant debate with this disorder is that the above symptoms are really not that bothersome. They can be niggling and annoying, but I’ve had them for over five years now. I could go down the very long process of getting diagnosed, but I came to the conclusion that it wasn’t really worth it — especially having to have a CT scan which I’d rather avoid because of the radiation.
At the time, most members said my symptoms correlated with classic ES rather than vascular, but the more I think about it, the more I am concerned I do have some vascular symptoms as well.
For example, I have had orthostatic hypotension symptoms for as long as I can remember. Again, it doesn’t really affect me, but I do sometimes feel dizzy if I stand up too quickly. Then again, I know several people that have this and that it is relatively common.
More concerning is that occasionally I get ear whooshing. If I’ve been laid flat for a long period of time and stand up quickly, I can sometimes here the blood rushing through in my left ear. I don’t get it any other time other than going from laying to standing, and it doesn’t happen very often even then.
I have also noticed that my left ear feels sort of ‘full’ when I wake up in the morning. It usually goes away within 30 mins, and I don’t have any loss of hearing or anything like that.
So the more I analyse myself, the more I seem to worry that I do actually have some vascular symptoms relating to the presumed ES. Now, when I read about people here with vascular ES, their symptoms are often debilitating, whereas if these symptoms I have are vascular representations of ES, they are very minor inconveniences. I don’t have any of the extreme dizziness, vertigo, headaches etc many members seem to unfortunately suffer from.
Having said this, the prospect of having any vascular symptoms at all is terrifying to me. I have OCD and extreme health anxiety, so as you can imagine, my minds been racing with fears of going to be at night and having a stroke.
As anyone from the UK will know, getting an ES diagnosis is a long, laborious journey, and not being mentally prepared for it, I’d really rather avoid it if possible.
I feel in this constant tug of war in my mind: on one hand, none of this actually effects my day to day life, but on the other, the concept of my arteries being compressed and the potential fatal complications are terrifying. I’m unclear on whether vascular ES can simply be left alone — or whether that judgment call is based on the severity of the symptoms. I’ve also heard vascular problems like that being linked to serious diseases like Alzheimers, so then if I do have it, perhaps it shouldn’t be left alone simply for that reason. It’s so confusing!
I’m not really sure what I’m actually asking with this post — I suppose just some advice? I thought perhaps I could get an MRA scan which reassure me on the vascular stuff without having to go down the ES rabbit hole, but then everyone seems to say you need a CT.
Thanks a lot for listening.