Finally diagnosed with clicking larynx syndrome!

@anna_pogu hey! Welcome :slight_smile: I’m so glad you reached out to her- she seriously changed the trajectory of my life! I hope she is able to help you too! As far as other symptoms I definitely had the tightness in my throat and extreme globus sensation, like I’m talking crying, screaming, shaking, gagging, dissociating- it was so incredibly bad. I also had a lot of facial pain like from my temples all the way down to my collarbones, especially on the left side. Also acid reflux, loud tinnitus, stuffy ears, migraines. The surgery replaced the globus with a much more mild version that is due to swelling and nerves healing. I’m sure with time it will get even better. The clicking was gone from the moment I woke up from surgery. Still have the facial pain too and some throat pain, again not as severe. My ears are still trying to settle too. Tinnitus got quieter, acid reflux is gone, and I’ve only had 2 migraines since the operation but I was pretty fresh out of surgery at that point. I hope this helped!

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Your posts are so encouraging @a_catindisguise , I’m so pleased for you :hugs:

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@Isaiah_40_31 thank you very much for your warm words and thanks for having me here!
@a_catindisguise oh my gosh, sounds awful what you’ve been through! I’m still shocked that with these many symptoms there are doctors who say it’s nothing!
I hope that you are getting better and better soon! I’m a singer too and I’m also a teacher, so my voice is the one thing I’m really anxious about when it comes to surgery.
Greetings from Austria,
Anna

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I don’t know why I didn’t see this sooner.

My ear pain has unfortunately been daily since this post, I didn’t have a good marker for how long it had been until I found this thread again today.

Dr. Hackman is aware. He tried muscle relaxers which didn’t help and I’m currently fighting with insurance and doctors offices to get scans covered to plan next steps.

I have to take the max tylenol and use medical mj to keep the pain at bay. I’m not supposed to be taking ibuprofen right now but sometimes I have to take one dose at the end of the day.

Hoping to get some answers.

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@anna_pogu , we’ve had singers & teachers on here with voice issues, it can take a while but usually does seem to resolve after surgery…

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@ectocake - With the recent conversations here about FIESTA MRI or CISS 3D scans that can see nerves, would you consider asking Dr. Hackman for a referral for one which might help clarify what is causing your ear pain? The four cranial nerves often affected by ES which can also contribute to ear pain are the trigeminal, facial, glossopharyngeal & vagus. It’s can be small branches of these that do the ā€œdirtyā€ work.

I’m so sorry you’re still so uncomfy & hope Dr. Hackman is able to help you find cause & solution. :pray: :gift_heart:

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Not only Hackman but her other doctors as well to see if issues with cranial nerves and the motility issues. It could be that 3d ciss picks up an issue totally unrelated to Styloids. As much imaging as that poster has had the Doctors might be more willing to order that MRI because they haven’t solved the issue.

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Unfortunately I’m fighting with my insurance company to even get a CT with contrast done. I’ll be talking to Dr. Hackman this week to try and see whats next.

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A damaged vagus nerve can cause dysmotility problems. That seems to be well documented to use for an appeal. So you might have an easier time getting the 3d ciss Mri than Ct. But probably not. Constant fight with insurance over tests.

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I’m sorry your insurance isn’t supportive. It seems these days many insurance companies are more often willing to do ā€œcombatā€ to decline services than to help the patients paying for the insurance plans. It’s just not right!

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@anna_pogu I know, I was shocked that my local doctors could not pinpoint it. I was told either that they couldn’t speak on it or I had a bunch of other diagnoses thrown at me. Huge waste of time, money and the little mental energy I had being so ill at the time. My local doctors know what was going on with me now and the procedure I had to fix it, so hopefully it can help someone else in my neck of the woods someday. It was truly a horrific experience and I’m so sorry you are dealing with it too. :people_hugging:

As far as the voice thing goes- I’m a little over 3 weeks post op and I’m getting my range back slowly. I was able to talk normally at about a week out but I’m still working on my singing voice. It’s getting there though! I’m confident it will come back fully :relieved: so try not to worry much about that!

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I’m so pleased that you’ve found the right doctor and are improving @a_catindisguise :hugs:

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Hey y’all I’m back :wave:t3: I’ll be 2 months post op on the 10th and thought I would update on my recovery. I really feel like I turned a corner this past week! I am almost back to 100% normal! I hardly feel pain anymore, just residual discomfort from my nerves healing. When the swelling started to go down I did have some occasional clicks on the side that was the worst, but as I continue stretching and massaging at home they resolve more and more. I still have some residual tightness on that same side so I will be starting speech therapy pretty soon to help resolve that. Getting my life back slowly but surely! This has been a tough recovery but I’m so happy to be nearing the end of the healing process. 🩷

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Thank you for sharing your good news, @a_catindisguise! So awesome that you’re feeling so much better! I hope you’re able to enjoy singing again, soon. Will the vocal coach you see be able to help with that?

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That’s really good to hear, thank you for coming back to update us- it’s good for people waiting for surgery to have that hope, & also good that we can learn about the recovery timeframes…hope the speech therapy helps!

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This is incredible, I am so happy for you and hope that I can experience this joy one day.

If you don’t mind me asking what are / were your symptoms?

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Thought it was time to post my story… - General - Living with Eagle"

This is a_catindisguise’s story. You can scroll right up to the very top and read it.

Also, this is found on the user’s profile page:

My symptoms started 2 months ago after a chiropractic adjustment, but i suspect I’ve been dealing with ES for about 8 years now. Had really bad posture and teeth grinding/clenching. Symptoms started off with intense pressure and pain in my ears and jaw. A few days after that I noticed clicking and pain in my throat when swallowing. Then i started having pain from talking too long or trying to sing in my higher register. This sensation was so alarming for me that I didn’t want to eat or drink water or even swallow my spit. I quickly began researching and came across HBS and ES. Then all the weird neurological symptoms I had experienced for years prior started to make sense….tinnitus in both ears, blurred/cloudy/pixilated vision, random episodes of feeling like I’m going to throw up and pass out, shortness of breath, food aversions, etc…so now I’m here on this forum trying to find the support I need not to :skull_and_crossbones: myself. This has driven me absolutely insane. I already had anxiety before all this, but this is like nothing I’ve ever experienced. No doc has been able to put a finger on it yet, but i am currently waiting on the results from my neck CT angiogram w contrast that my 2nd ENT ordered.

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Hey y’all! I’m back for my 3 month post op update!

Let me start off by saying, this healing process is no joke!! There are lots of ups and downs day-to-day at this point. I’ve finally started to get tastes of feeling back to normal, but those moments are still fleeting. My symptoms that still fluctuate are occasional clicks and pops that happen a few times a day or every other day. They are mostly just noises that I hear now but every once in a while I will still get a bigger click that I can feel. I still have very mild globus sensation on the left side of my throat that will completely go away at times. I still burp a lot and gag up saliva sometimes. I still don’t have full vocal control in my lower range but I can mostly sing now.

I haven’t had the time for many therapies yet since my surgery was so close to the holidays but I have started myofascial release therapy and I have plans to get into a speech therapist. Still very hopeful that everything will fully settle down once and for all. I’ll be back to check in :slight_smile: 6 months is when I should really be able to give a good representation of the results.

Please don’t get discouraged reading this- everyone’s healing time and process is going to vary, and it’s normal to have some residual symptoms while everything continues to adjust and settle.

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Forgot to mention- the scar is still really sensitive and the right half of it is numb. There’s also a patch of numbness right under my chin on that side. It’s extremely uncomfortable to touch so I’ve been really easily overstimulated with necklaces and certain shirt fabrics.

I’d still do the surgery 10000x over, there’s just been some tough moments since then.

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HOORAY that you can sing :notes: again even if it’s not in your full range. At least it’s a good start toward getting back to normal!! Great that you’re finally able to start myofascial release therapy. I hope it & the vocal therapy will be very helpful.

I’m already looking forward to your 6 month check-in! :hugs:

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