Direction to go?

A dentist first noticed the elongated styloids and brushed it off to me. Well 2 years later I’d started having the dysphagia, the constant ear infections, some hearing loss in left ear, tmj issues and more. Well I mentioned ES to my Dr and she confirmed. Then sent me to a Dr. In Nashville to treat. He confirmed diagnosis and scheduled surgery. He told me my scar would be an inch long. My scar goes from right under my left earlobe to midline in my throat and he took my submandibular gland as well, after causing me to lose my insurance. Well fast forward three 3 years and I’m just now realizing that what I’ve been brushing off as panic attacks and what not may be symptoms. I just don’t know for what. I don’t know what dr I need to be seeing to help me here. I think Was may have caused a secondary syndrome.

That feeling when you stand up to fast and are about to pass out, tunnel vision, and there is nothing you can do to stop it then except mine happens anytime. I could be driving, sitting on the couch not having changed position at all, or heaviness of my brain, hearing loss and pressure in left ear, feels like my tongue will pull the the right or left hard, word mix ups, confusion, hard time associating things and people or places, severe balance issues and clumsiness, lack of coordination, brushing easy, heartburn, RLS, vision problems, saliva decrease, dry eyes, bladder issues and I’m sure there are more. Can some one help me figure a direction please. Thanks in advance.

I noticed it slightly helps me to wear a soft neck collar for a week about 4 hrs a day when the symptoms get worse… especially prevents from intensively looking down (at the phone, book etc) which I noticed makes the symptoms worse.

I’m so sorry you are dealing with all these issues. I have something called dysautonomia and some of this sounds familiar. I would suggest starting with your primary doctor or maybe a neurologist. There’s so much going on here that could be serious and unrelated to eagles.

In the meantime I find that sticking to a strict sleep schedule and staying hydrated is helpful. Also obviously getting up slowly from sitting to avoid that sudden drop in blood pressure. Pace yourself and take it as easy as possible until you get some help.

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I’m so sorry to read that you’re dealing with all this…
I don’t know much about dysautonomia, or POTS, but others like one_day has will chip in hopefully, but they might be things to look into.
The dry eyes, dry mouth & bladder issues can be symptoms of an Autoimmune disease called Sjogrens Syndrome- Ben’s Friends do also have a group for that; here’s a link:
Sjogren’s Syndrome Support - Support Community for Sjogren’s Syndrome (sjogrenssyndromesupport.org)
You could have a read about it without joining if you want, or sign up!
Sjogrens can be diagnosed with blood tests looking for inflammation and antibodies, and possibly a lip biopsy depending on the results. You would need to be referred to a Rheumatologist if it’s suspected. I don’t know the US system- in the UK we can get blood tests through our GP (PCP), & then get a referral depending on the results.
It might also be worth still considering ES; vascular ES can cause the symptoms you mention, plus compression of the Vagus nerve can cause anxiety, and digestive issues for example. It could be that your styloid process has regrown after surgery- it can happen in rare cases- or it could be that not enough was removed. Also did you have both sides removed, or just one? If only one side has been removed it could be the other side causing symptoms. So a CT with contrast would be a good idea to see what’s going on.
I’m sorry, but it looks like there might be a few avenues to start exploring :grimacing: So sending you a hug :hugs: Please let us know how you get on…

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Wow, keene896!

I’m very sorry to read about what you’ve gone through & what you’re dealing with now. I think Jules, one_day & vdm all gave you good advice. I would have advised doing the CT scan to revisit styloid lengths, but my focus is very ES-oriented so the other suggestions give you a more complete picture of things to think about.

Please keep us posted as to what you learn. I hope you’re able to get some answers soon so you know what your next steps should be. Praying for you now. :hugs: