My first consult

Here I sit in the waiting room at Dr. Andrew Coughlin’s office.
He has a great reputation and works with another surgeon for VES.
Just excited to have a discussion with someone who knows and understands ES!
More to come…

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I hope it goes well!

Hi Tammy1, I see Dr Coughlin in a couple days. How did it go, any information you learned you didn’t know prior?

I personally, did not have a great experience with this doctor.
Prior to even examining me, he told me that he couldn’t help me.
I felt I was not given a fair consideration.
He told me to see a neurosurgeon.
The neurosurgeon won’t see me but told me to see an ENT!
And on it goes

Oh no, I am so sorry. Seems like this happens to people with eagles way too often. I’ve felt that feeling of hopelessness as well being shuffled around between doctors that don’t know what’s wrong with me. What was the doctor’s rationale for sending you to a neuro and not thinking its your styloid causing your issues? What are your symptoms? Hang in there Tammy.

The doctor seems to think I have a bigger neurological issue going on. Honestly, I think I scared him by mentioning long Covid. I had an allergic reaction to the first Covid booster and then got Covid. Five months later I have never been the same sense, horrible headaches that start at the top of my skull and come down, finishing with major pressure in my top and bottom jaws. I’ve been diagnosed with trigeminal neuralgia, which began after the first Covid booster along with swelling along the whole left side of my body. Yes, my shot was in my left arm. I believe I’m dealing with inflammation.
I say that simply because I was on steroids last week for a sinus and two air infections, and felt great. Now I am back to the usual pain down my neck and my shoulders and down my arms. The majority of my pain is my neck across my shoulders, and down to my deltoid muscles very specifically I feel a lot of muscle contraction during the day in my upper arms. And then the next day I can barely raise my arm to 90° and I will be left with nerve pain from my shoulder down my arm into my hands. One thing I’ve noticed is as soon as you mention Covid or long Covid no one knows what to say and they send you on your way. I diagnosed my elongated styloid’s on my own. It had been written up in medical records CT‘s and MRIs since 2015 I have always inquired what it meant but I was told it was nothing significant. I think my symptoms began with Eagles, around 2017. symptoms on the left side only lots of ear & eye pain. How about you?

P.S. I love the name Haggard.
It describes how I have been feeling the past few years.

Yep, haggard describes how I feel too. Very tired and in chronic pain. So you have had CT that showed elongated styloids? How long were they out of curiosity? Do you still have ear and eye pain daily? Have you had an MRI of your cervical spine to see if you possibly have a pinched nerve causing your nerve pain? They could do injections if so. You have probably thought of that already tho.

What I would ideally like to her from the surgeon is some kind of reassurance that what I am dealing with is related to an elongated styloid and that surgery is my best bet. I know they can’t ever guarantee but I would like to at least know I made the best decision considering the evidence.

This is what I am dealing with all on left side:
-Daily persistent nagging ear pain. Can be sharp pain, can be dull pain, can feel like someone has shoved something up into my ear, can feel cool and can tickle. This ebbs and flows all day, can be bad at times and can not hurt at all but its everyday and my biggest issue.
-Pain/sore throat deep on the left side of throat. Intermittent but almost daily like the ear pain.
-I have a click/pain at times when swallowing with my head turned to the left.
-I get pain/tightness under the ear and down under my jaw/neck to my adam’s apple.
-I get neck pain along my left SCM.
-I get pain behind the ear on the mastoid process.
-I get pain behind my eye, above my eye, along my cheek bone, sometimes to the top of my head. I have also had pain to the left top teeth, this is not often though.
-I have chronic daily persistent headache, primarily on the left side. I also have chronic migraine, 15 or more a month.
-Feeling of forehead and eye “melting”. Swollen eye lid
-I’ve also noticed I have a reduced gag reflex on my left side. I can feel my left styloid all day but when I try to feel for the right one I can’t due to the gag reflex. I am thinking this might mean damage to my vagus nerve.

All in all this really fking sucks.

Hi Tammy1. Just wanted to speak up in solidarity: I have long Covid from a March 2020 infection. My Eagles was diagnosed in December 2022 (vascular Eagles with bilateral IJV compression was diagnosed by skull base surgeon after MRV due to related symptoms), though I’ve had classic ES symptoms for decades. I just never interacted with a ENT/neurologist/any other specialist who knew about it so it was never part of their differential. They have been worse and more constant post my Covid infection.

The arm and shoulder pain you’re describing could be what’s known as coat hangar syndrome, which is common in POTS or POTS like orthostatic intolerance syndromes (the autonomic nervous system is not functioning optimally and doesn’t appropriately manage your heart rate when you change positions - this can also be due to vagus nerve problems which can, of course, be related to ES). If you’re having autonomic nervous system symptoms you may be well served by seeing a qualified neurologist. Keeping your fluid volume up with water and electrolytes can help.

I’m so sorry you’ve been dismissed/sidelined when you mention LC. I do think there’s additional stigma when people mention vaccine injury. You may want to stop mentioning that, just a thought. Post viral illness is not yet well understood and unfortunately many illnesses that are misunderstood are initially dismissed as being psychosomatic or somatic; multiple sclerosis is a good example. Women face the additional medical trope of the hysterical woman (guessing your gender based on your user name).

Take heart : There are some excellent researchers focusing on Long Covid, looking for specific bio markers. I’m following their research.

More than anything I hope you find some doctors who will take you seriously and treat you humanely. I’m sorry you’re suffering and being dismissed.

Being dismissed:
I had surgery for an acoustic neuroma back in the 90’s. (That’s another one that’s missed, mis-diagnosed and mis-treated…and has sometimes a poor surgical outcome. ) When I could discern neurological symptoms I told my G.P. ( a dear friend and fellow surfer), that his treatment of my “middle ear infection” was getting me nowhere for over 1.5 years. I wanted to see a neurologist. That was not even possible without a primary doc’s approval. I begged and he finally referred me. Two weeks later I was not only diagnosed after seeing a neurologist but on the operating table having brain surgery ! All went well. I lost a bit of hearing and have slight residuals but I was very fortunate. Message: Never let this flawed medical system stumble you ! Be persistent. When your doc refuses to use his own common sense…use yours and vote with your feet. There are other docs out there. No doubt about it…COVID has complicated the process of accurate diagnosis.