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Eagle Syndrome - Online Support Group

Has this happened to anyone

So idk if this is just me but…I get the feeling of something in my throat (of course u guys too not the just me part) along the right side locations vary. But also feels like the right back of my soft palate get swollen as well(could just be me but not sure) and when that usually happens I feel like I try to I guess pull at it in a sense with my throat and today I noticed a red mark in the back of my throat …don’t know if its from doing that or if something else is going on now…attaching pic if I can so you can see what I mean.

Usually if people can feel the styloids in the throat it’s more to one side rather than more in the middle that yours looks like…but they can grow at strange directions so it could be. Some members have had red patches & sore throats with ES.
Quite often the feeling of something in the throat/ being stuck in the throat can be down to nerves being irritated rather than the actual styloid poking in the throat, so that could explain why you feel it in slightly different locations. Sorry I can’t be more helpful…

It just freaks me out and makes me think its something worse…

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Hi Sara,

A lot of people who’ve been diagnosed w/ ES move into a kind of panic mode & because ES symptoms are so diverse & unusual, they start researching on Google & come up w/ crazy diagnoses or fearful ideas of other terrible things that might be going on. The best advice I can give you is to take care of what you know you have i.e. ES. If the other problems/symptoms persist, pursue those next unless the symptoms clearly point to a different serious health issue in which case you should take care of that now.

Before I had ES surgery, I would get the sensation that roof of my mouth had been terribly burned (i.e. like I’d just had a scalding hot drink) after I did vigorous aerobic exercise. I would also get heart palpitations & my blood pressure would drop which gave me the sensation that I was terribly winded & couldn’t catch my breath. That in turn would make me feel like I was going to pass out. I later learned these symptoms were caused by my vagus nerve which was being irritated by my styloids. That was just one set of many odd symptoms ES caused for me.

Because there are 6 cranial nerves that can be affected by ES, and each one has a far reaching effect on the body, irritation of any or all of those will create odd, scary, uncomfy & even sometimes debilitating symptoms. Until the styloids &/or stylohyoid ligaments are removed so the nerves can heal, those symptoms will continue to come & go & be problematic.

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Fascinating! Eagle’s is a book with dozens of chapters, continually being rewritten, added to and re evaluated. Twists and turns, highs and lows. Incredibly strong and determined heroes at every turn.

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Yes, I panic about it often until I know exactly what’s going on but this virus has stopped everything in its track at the moment…frustrates me

Love the picture you painted w/ your post, shayney!!

I’m sorry for the screeching halt that has been put in place for all people pursuing a solution to ES. Dr. Samji in CA will start doing ES surgeries again as of next Mon. He’s working hard to rebook ASAP the people whose surgeries he had to postpone because of the shelter in place order. Thankfully he works out of a surgery center & not the local hospital. I feel the smaller surgical center is a safer environment.

You’re nearer to Dr. Cognetti. Have you contacted his office?

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Thank you :slight_smile:

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I definitely understand how you feel. I think I went to my general physician about 10 times thinking I saw something new in my throat - some bump or red spot or something. Each time he made me feel better, told me it was all within the realm of normal and not indicative of anything bad. He was correct every time and I appreciated his patience so much.

This is good news to hear about Dr. Samji. As I have been putting everything off due to the Coronavirus outbreak. It’s extremely difficult to continue daily activities due to the pain, and this quarantine is not making things any easier. As the months have gone by I am now asking myself if I should just take the risk and continue my path in seeing Dr. Samji as soon as the travel ban is lifted from Nevada to California. Thank you for updating us Isaiah much appreciation for your diligence with responding everyone. :slightly_smiling_face:

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I hope you’re able to progress toward surgery soon, ESinLV! Making the decision to have surgery is hard but then getting put off once the decision is made is worse! So glad I can be here to help.

:blush:

Hi All,

I feel like this might be the best post for me to drop a line. I was diagnosed with ES back in February, 2020 even though now I know I’ve had other symptoms I dismissed my whole entire life.

@Sara I can relate to how you feel and having the ability to take pictures today will motivate you to look at it all the time. Our throats change a lot, sometime on daily basis. We also tend to take pictures when we feel something therefore we don’t have a point of reference of what our throat looks like when it is perfectly healthy.
I was in the same position and have maybe 1000 pictures that I was hoping were going to provide an answer. The red patch you see in the back doesn’t look pathological, but I am not a Dr so I might be wrong. If you have the opportunity for telehealth session with your PCP or ENT, he can look at that picture and provide more feedback. There is a way to take snapshot of the back of your throat that is sharper, but you need a little assistance from someone who can perform that task.

Since you do have ES, it is very important to try to avoid additional stress which in turn worsens the nerve pain.

As far as Dr. Samji and surgeries during the pandemic. My surgery was originally scheduled for March 23 and postponed the day before. My pain isn’t properly managed by pain medication, and Dr. Samji was incredible attentive and understanding of my issue. On April 20 I had my surgery, despite the pandemic and me being in risk group. The pain, constant rumination over the issue, the anxiety that goes with it, trouble sleeping etc. helped me stay motivated to get this done. Today, a week later I am so happy I did it and that it is behind me. I’ll share all the information in a post shortly.

Hope this helps in some way.

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