There was another video here about her journey but this one is her speaking and telling her story after regaining her voice.
Thank you so much for posting this video, @Siren! I had an email conversation w/ Nora a year or more ago, & she was still searching for answers & was voiceless. I’m thrilled to see how far she’s come. She is truly remarkable & very articulate. All I can say after watching this is WOW! I hope this video inspires others as much as it did me.
This is the link to her first video though now she has answers she didn’t at the time she made it.
Oh right! Thank you for posting it! I saw it on Facebook Eagle Syndrome group and I believe it was Nora who posted it in Jan 2022 if I’m not mistaken. It was the first time I heard of her story. I can’t imagine losing your voice for that long but she was so determined.
Thanks for posting this, I’ll have to watch it
It’s very interesting to watch, her symptoms started just like mine. We all have so much in common - waking up one day with a sore throat that doesn’t go away.
I spoke to an SLP recently who has never heard of ES and I told her about Nora’s experience - she lost her voice because her voice box became inflamed and wasn’t able to talk. I explained that Nora saw many specialists to figure out what was wrong. The SLP said Nora must have seen the wrong specialists because something’s not right. I didn’t understand what she meant by that but it’s my understanding that Nora saw many specialists and couldn’t get answers.
Although I wasn’t telling this story because I was worried about my voice, the SLP reassured me saying, “That won’t happen to you!”. But just because an SLP hasn’t heard about ES, doesn’t mean that it can’t affect the voice. It does exist. It’s frustrating.
I have a friend who’s husband has lost his voice over the last couple of months, & he now has shoulder pain. I told her he should get a CT scan to rule out ES. She’s willing, but he’s not. He’s waving it off. At the same time, I have another friend who’s got the “bone in the throat” feeling, ear & shoulder pain. I’ve talked to her about ES & given her the same suggestion. Maybe neither of these people have ES, but I’m hyper vigilant re: those symptoms because of my time on this forum & because of all the people here who’ve lost years of their lives, & some, most of their savings trying to get a diagnosis. A CT scan in the hands of an ES knowledgeable doctor is an easy & time saving way to learn one way or the other.
Well said. So many people have lost years and their well-earned money trying to figure out what’s wrong.
My massage therapist has a son that has had issues with constantly clearing his throat. He’s already tried a ppi to eliminate acid reflux to no avail. I mentioned to her that if he’s had a panoramic, then she might be able to see elongated styloids. It’s the easiest way to access imaging because requesting a CT would be difficult in our province 1) for a simple ‘clearing throat’ problem, 2) our healthcare system is at it’s breaking point, 3) the pandemic.
SLP’s are EXTREMELY arrogant and ignorant in my experience/opinion. They think they know everything and that their therapies are the best treatments around lol
I think they get defensive when they can’t figure out whats wrong with some people
Totally agree w/ you. No doctor wants to be told by a patient that the patient knows more than the doctor. It takes a humble doc to receive new info from a patient. Thankfully, there are some of those doctors out there.