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Eagle Syndrome - Online Support Group

Froedtert to the rescue?!?!

Hi, Shayney again. I have what I believe to be good news in my journey with ES.
I ran across the name of a surgeon at Froedtert hospital in Milwaukee and after reviewing my medical records, she will be scheduling me for a follow up CT scan and treating me!
I am reeling with relief and excitement!

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That is AWESOME NEWS!! This has been a long time coming for you, Shayney, but you’ve persevered! I hope she’s every bit as good as you understand her to be & that this is the beginning of your road to recovery. Please keep us posted as to how your journey progresses.

:hugs:

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ES motto: “NEVER GIVE UP!” you will prevail if you persevere.

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Great motto & you’ve proved it to be true!

Hello,
I am anxiously waiting for Froedtert to call and schedule my CT scan. I’m assuming they are waiting on my insurance approval.

I will keep you posted.

Have a wonderful day.

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Hope that the doctor turns out to be good! Glad that it seems to be going in the right direction!

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The thing I am most interested in is the results of this next CT scan. I’m curious to see if my left was indeed removed completely and if any visual progress or damage will show up.
I am hoping to hear something today as the original surgeon seems overly eager to remove the right side without any post op follow up on my left side procedure when originally he was so skeptical that the right side would ever need to be done.
His office is calling me frequently to schedule the surgery and I am pushing it off until I have a concrete surgery date with Froedtert.

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You’re making a wise decision to get the CT scan & wait to schedule surgery w/ anyone until you’ve had a consult regarding what it shows.

Waiting w/ baited breath to hear your news!

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Now they are debating between CScan or 3D. I will know tomorrow.

A CT scan can be presented in 3D images. Is that what you mean? I received 4, 3D images along w/ my CT slices which really helped me understand what I had going on in my neck.

I have no idea to be honest about the 3D scan. Today they called and said they are doing a peer to peer and will contact me as soon as they get confirmation.
I am recently finding when I go to speak, my voice catches and I am getting winded when I talk for more than a few sentences. I heard these symptoms but have not experienced them before. It is frustrating since I do reception work. Brain fog and anxiety are super high.

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Hi Shayney,

Those are all symptoms that can be caused when the vagus nerve is irritated. The vagus nerve is almost always irritated w/ ES because it’s so prominent in the neck, through the chest & down into the abdomen. Thus it affects a wide variety of body functions. Getting your styloids removed should help recovery of those symptoms. It did for me.

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Hello again.
My second CT scan has been approved through my insurance and I am now waiting for the hospital to call me to set up an appointment. Dr. Massey’s nurse at Froedtert told me "don’t let them drag their feet! If I don’t hear from them promptly…call them!)

One more step on the ladder to my second surgery. :slight_smile:

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FANTASTIC! A nurse who’s advocating for you. Keep her name handy!! I hope the “process wheels” keep moving forward at a reasonable pace. Please let us know when you get your CT scan date & what the results are once you have them. :hugs:

My CT scan with contrast is scheduled for this Friday at 2:15!! The ball is rollin!! yikes :woozy_face:

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HOOOORRRAAAYYY!!! Great news!!

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Yay, that’s good!

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You guys are so encouraging. I don’t know what I would do without you and this group. It seems that people in general think this is over-exaggerated, or a bid for sympathy. I even question myself at times…am I making a big deal out of nothing?, am I attributing symptoms that might very well just be allergies like many have implied? am I simply not allowing myself the time it takes to heal before jumping into another surgery?
I feel and pray that the physicians at Froedtert will explain things to me, show me what is going on.
I honestly believe that the doubt and uncertainty is more harmful and painful than the ES symptoms sometimes.
I love this group!

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You are so right, shayney! Doubt, uncertainty & the stress they cause can absolutely cause symptoms from all causes to worsen. I am expectant & hopeful that you will get good, clarifying answers from the medical staff at Froedterdt. Since you have bilateral ES, there is a good chance that your remaining symptoms are from ES, but as you know, it’s hard to tell which symptoms were primarily caused by ES until the styloids are both gone.

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My apologies for disappearing. I’ve heard back from Freodtert at last!! I will be going in for a consultation on September 4th. I have worked my symptoms into quite a frenzy waiting for confirmation. I hope to find out what was actually done during my surgery on the left side, if it was effective and if my healing (or lack of) is normal. I am so anxious for some answers!!

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