New to ES - Potential Diagnosis - My Story

Hi everyone, this is my first post pretty much ever on a forum like this but after reading so many others it feels safe and comforting here. I have not formally been diagnosed yet with ES but two Drs believe it’s a strong bet.

Here is my story. I’m a 43 year old married, mother of 3 ages 14, 18, 20. I also a work very full time in a senior level IT job at a University. But for the past 3 1/2years I have been suffering from shoulder pain. I also suffered from vestibular neuritis in 2019 which landed me in the hospital and In bed for 3 weeks. In the past 2 years I have also been diagnosed with a frozen shoulder and labrum tear in my left shoulder and then nearly a year later I refroze both shoulders. In January 2021, I had cortozone injections in both shoulders and that helped along with PT. However, 2 weeks later, my throat started hurting, It felt like there was always something stuck in it. Plus there was always mucus in it that wouldn’t come out, my neck killed on one side, there was a fluid feeling in my ear, pressure in my head and I had mild body tremors. Also my migraines and aura’s were increasing. I have been on preventive migraine meds since high school. But now something definitely was not right. I was away with my daughter so when I got back, I got a covid test but it wasn’t that… so I started to make appts to see a bunch of doctors until I finally found a new neurologist who decided to run an mrv. Unfortunately, he did not expect to find a blood clot in my left transverse sinus. He immediately put me on blood thinners and referred me to a neurosurgeon who wasn’t convinced it was a clot but between the chief radiologist and my neurologist, they convinced her to run an angiogram which eventually confirmed it. So now I have a clot in my brain but don’t fit any of risk factors associated with why you may get a clot…. so I start going a bit crazy. And being that my job is to fix things and find solutions and causes and I am very “OCD” about getting answers, I had been digging and digging until I found an article titled “Eagle Syndrome as a Cause of Cerebral Venous Sinus Thrombosis”
So of course, literally, after my angiogram confirmed my diagnosis, I asked the neurosurgeon if there was a chance I had Eagle Syndrome and that could had caused this. She immediately said no. However, 1 month later, at our follow up, she told me she could not let it go and she checked my scans and even showed them to another surgeon and in fact my styloid is longer than 3cm, so she suggests I see someone who specializes in Eagle Syndrome because she is not familiar with it. I have an Appt with Mark DeLacure on the 21st thanks to this group. I have literally been in pain in my neck and throat since Mid Jan. Hurts to swallow or touch my throat and turn my head. Don’t know what to do. Cant do surgery because of blood thinners. Really want answers. Want to stop having problem after problem. Grateful to be able to share with this group. I’m to scared to let friends in to all this, don’t want pity. Also we only told my kids I have a clot, not that it’s in my brain. Not sure how they would handle that. Don’t think it would be good. Only my parents and husband and a million Drs know. It’s really scary and lonely.

I’m sure that it’s a very scary place to be right now, but well done to you for doing all the detective work yourself & for finding ES! It is extremely rare for ES to cause blood clots, but does occasionally happen. Dr DeLacure has done quite a few surgeries on members, so you’ll be in good hands with him…
What is the plan for the blood clot; is it to monitor and keep you on blood thinners, or are they considering surgery? I don’t know much about the treatments, but it’s a tricky one, as if the clot was caused by styloid compression of a blood vessel, then presumably it could happen again unless you stay permanently on blood thinners, so surgery would be a permanent solution, but obvs you’d have to come off the blood thinners for surgery… Hopefully Dr DeLacure will have some answers for you when you see him next week.
Sending you a hug & hope that finding the forum helps you feel a bit less alone. I’ll be praying for answers for you :hugs: :pray:

So for now it’s stay on the Thinners for 6 months-1year and have another MRV to track if clot has shrunk in 6 months which is beginning of Sept.
I guess we will see what happens Wednesday. I literally have a thousand questions for him. Wondering if Styloid could have been pressing on nerves that having been causing some of my other issues for the past few years too. Curious if anything would show up in my older scans verse my newer scans too. Really want answers!!!

Bear in mind that most doctors familiar w/ ES are not well versed in all the symptoms it can cause. As a result, symptoms that are caused by ES are often dismissed as unlikely to be caused by ES. If you type “symptoms” into the search box, many discussions will come up on that topic. Reading through those will give you lots of good information. Jules wrote three in-depth posts about ES that will come up in your search.

Let us know how you get on with your appt, hope it goes well!

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So went to Dr. But as expected, he really couldn’t tell me much based on my current scans. Had a CT done and now have a new appt this week. More waiting… :pray::crossed_fingers:

Frustrating about your doctor appt but glad you have an updated CT. That should help a lot in making progress toward a diagnosis. Please let us know how you’re follow-up appt goes.

I hope the new CT is helpful…