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Eagle Syndrome - Online Support Group

Voice change/problems


#1

Started having a sensation of a lump in the right side of my throat. The pain persisted and I just brushed it off as a sore throat. I am a singer and my group and i had a performance coming up. I pushed through and with the help of a ton of otc NSAIDs and things to treat allergies and a ton of ludens i was able to make it through. About a week after my performance every time i would say more than a few words i would lose my voice. Went to ENT and he said that my vocal chords were inflamed and said it was from possible silent reflux and put me on Zantac and gave me a steroid shot. My voice has improved some over 4 weeks but voice is still very weak and still have the lump feeling on the right side when i swallow. My right jaw is also sore feeling and where my lymph nodes are feels sore. My right ear bothers me a little. I’ve been back to the ENT and he did another scope. Says he can’t “see” anything but said my vocal chords look better. I still sound hoarse. I can’t sing still and i can’t raise my voice. Voice sounds breathy where as it used to be strong. I had an ultrasound yesterday and won’t get the results of that until Monday. I feel like i can actually feel something with my finger (had a tonsillectomy at age 5 so tonsils are out of the way) but not sure if it’s my hyoid bone. I also feel like there’s something in my throat when I swallow. Feels like a sore. I would just love some answers and wanted to see if anyone else had an issue with their voice.


#2

This would be me a month ago! I was a competive singer in high school and I lead our children’s choir at church. One day I could NOT hit a high note to save my life! Surgery to remove right side ligament yesterday. Hoping and praying I can be a soprano again soon!


#3

Hi amanda81!

You’ve come to the right place. Your symptoms do sound very suspiciously like ES. We’ve had quite a number of vocalists on this forum over the years & most had the same complaint as you - loss of vocal range or loss of voice.

The best way for ES to be diagnosed is by a CT scan. You can ask your PCP to give you a referral but often it’s an ENT (look for one that is also a skull-based surgeon) who will request the CT scan & make the diagnosis. I’m sorry the ENT you saw wasn’t better informed. ES does have a particular set of symptoms that go along w/ it then all bets are off as the styloids & stylohyoid ligaments exist in an area of the neck where several major cranial nerves & the carotid arteries & jugular vein pass through. When the styloid(s) elongate or the stylohyoid ligament(s) calcify, they can tangle w/ or irritate some of those nerves/vascular tissues.

The symptoms can be far reaching producing gastrointestinal issues, shoulder pain, eye pain, ear pain, throat pain, facial pain, vertigo, migraines, vocal disturbance, feeling of something stuck in the throat, & more. People w/ undiagnosed ES are often diagnosed w/ GERD & treated for reflux because of vocal loss or constant low grade nausea when the issue is cranial nerve irritation & not based in the intestinal tract at all!

There is some speculation as to what causes ES & tonsillectomy was originally thought to be the culprit but there are many people who’ve not had tonsillectomies who do end up w/ ES. There is a possibility of genetic predisposition as well. We have several families who’ve posted on this forum where one of the parents & some of their children presented w/ ES though that’s a less common scenario.

You had some relief of your vocal symptoms because prednisone is a powerful anti-inflammatory. Prednisone shots & lidocaine patches are two external “remedies” for ES symptoms. They do help some people but aren’t permanent like removal of the the styloid(s) &/or s-h ligament(s).

Unfortunately, the only “cure” for ES is surgical removal of the offending styloid & stylohyoid ligament though the most invasive aspect (either styloid or ligament) is removed that can be very helpful as well.

Try to get an appt for a CT scan w/ styloid protocol. It does not have to include contrast although contrast will show if there is impingement of vascular tissues. Look through the Newbie’s Guide on this forum for published articles about ES where your symptoms are mentioned (besides that you will become better informed about ES if you read some of them). Here is a link for an article you will find very interesting & could also take w/ you to a diagnostic appointment:

We’re here for you in whatever capacity we can most help you on this journey for a diagnosis & solution to your symptoms.


#4

Thank you both for the info! I’m hoping to get some answers soon! It’s so frustrating just trying to be heard. Especially when you’re trying to get three kids out the door in the mornings for school. I have to try to get ones attention so they can do the yelling for me. I even had to put a little fence up out of my back door because I couldn’t call my dog back in from using the potty. But not being able to sing and having this constant throb on the right side of my throat/neck/jaw/ and ear and the feeling there’s something in my throat is the worst. Im only 6 weeks into this. I couldn’t imagine living with it for years :((


#5

I know exactly how you feel. About a month ago (pre surgery) I developed a habbit of snapping at my four kids when they were too far away in the house for me to call them or whistle or whatever to get their attention. Luckily they were really understanding about it. You’re in a difficult stage.


#6

Yes! A lot of snapping, clapping, and whistling as well! I read your surgery post and am so glad you had instant relief. Hope this is only up for you! Thanks for sharing your story. Whether this is what is going on with me or not it’s nice to be able to share with others what’s going on and it possibly be a solution!


#7

Hi @amanda81!
I might be a snapshot of ‘you’, several years in the future. I was a professional singer and wind musician, plus classical guitarist and amateur pianist.
My med records show that I complained about the sensation of a bone in my throat for 35 years. In the beginning it would flare up in high school during marching band season and I would lose my voice during that time (missing choir) - I had a saxophone hanging on my neck in marching band - oye vey! Luckily the uniforms had stiff collars, so that must have helped. I was prescribed anti reflux meds and put on special diets. Strange symptoms would come and go. I was called a hypochondriac many times. I was shunned from an organization for “faking PTSD”. I did not know that many past x-rays all had the past “film anomaly” that was actually bones growing inside my neck and throat.

Six years ago my husband and I had an auto incident - this is when my doctors believe the seat belt must have broken the right side Eagle Syndrome bone inside my neck (I had both sides, right side was very long). My voice was extremely difficult to rely on. It took four years to be diagnosed.

Things that helped me - an iPad. I had ready made questions typed out in an iOS software called ‘Notion’. I had a ready to go Explanation typed out that started with “My apologies for the inconvenience, but speaking is extremely painful because of a voice injury, please help me communicate - I have some questions”. I then could pull up another page for the situation and point to the sentence. I included a sentence “LOL please don’t whisper back to me, it’s a human reaction, but I need to hear you” or something like that. LOL isn’t amazing how many people whisper to you when you can’t talk?!

For my family I wrote a letter explaining the pain and how it flares up badly with demands of using my voice. I found that I had a “voice account”. My voice responded better, when I didn’t need to talk very much. I explained to my family that I only have “so many words” and to please consider how many of my words they are demanding. I also had a large brass bell that I rang for calling them. We set up rules for not calling to me from another room or upstairs floor. They needed to see my face to speak to me.

It was amazing how accommodating people in public were. I needed another page in my “repertoire” that answered the common questions asked. I also had a page assuring them that I will be OK again - if I allow myself to receive help from others in order to heal. Wow we’re the grocery stores nice to me. So we’re most people. Sure there were a few jerks - but the sweet reactions of people far out weighed the bad apples.
It’s been two years since the last surgery and this year I sang Christmas carols!!!
My full voice isn’t back yet, but I know it will be in my heart. I found with singing I had to be more mindful of notes that required a “glottal stop” (notes with a big spread where you needed to use your glottis to not slide between notes). It’s like an injured knee - I couldn’t sing some things too many times without a rest between. At first, I could only sing seconds (example: ‘A’ to ‘B’). This developed to thirds (‘A’ to C#), fourths (‘A’ to ‘D’) and so on. I had to be mindful and not force things. I had to let things go when someone bragged to me what a great singer they were and it was different for them because of that - LOL. Music has a lot of competitive people. Some are also extremely selfish and will never understand. They will always be stuck being them and frankly I’d rather be mute than have that personality flaw. I had to learn to not explain who I used to be, but it was hard. I started to feel as though it was a trap to waste my voice account on that person. They may never know, but I will heal better.

My damage was extensive. The guess is the nerve for my epiglottis was affected. I had pneumonia off and on before surgery and for 6 months afterwards. That eventually healed. My docs were sort of like “fans” and they did all they could do, so that I wouldn’t loose lung capacity. They didn’t start that way, until I gave them recordings and sometimes an album. They became more invested in me.

Before my case the insanely irrational quote often used was that “Eagle Syndrome does not affect voice production”. It was even part of the wiki page. Nothing could be more untrue. Vocal folds do not exist in a vacuum. Vocal folds rely on the complicated muscles and nerves surrounding them. They also need blood flow. My case was documented. I became a Wikipedia contributor and fixed a few things. A blessing occurred while I was typing it in and a Wikipedia editor started sending me questions. I told him the situation. Back then Wikipedia also stated that Eagle Syndrome often grew back. The stats flat out show this to be completely untrue. This part of what I say won’t be popular - but it needs to be said: Every human neck is different and every surgeon is human. It is easy to say that something grew back, when it was missed in the first place rather than admit one’s mistake.
This is slightly off topic, but I won’t be back to this site for a while. The stats for surgeries on both sides at once show that’s this method is extremely dangerous. It might be more convenient- but at a great cost of possible loss of life’s and definitely more scaring over the years. I’m sorry if someone reading this had both sides done at once, but I am begging you to have therapy to counter act the resulting scars that will continue if nothing is done. Wikipedia is not a medical site, but it’s where our relatives often go. It needs to be kept updated by someone who is healthy. I told Wikipedia that wealthy companies and people are able to hire full time people to keep the inaccuracies placed back in (after being corrected to truthful) in order to cover up their mistakes (I’ve seen this in the tech world too). The wiki editor told me it was “something for him/her to look into” so perhaps it will be better managed.

I highly recommend cold laser therapy. It needs to be done with a special cone attachment to avoid the thyroid. It needs to be done by an experienced person and not inside the throats which is illegal. Cold laser helps keep scar tissue down and promote healing. There’s nothing like it.
For me, right side Surgery discovered a ‘Carotid bundle’. An entanglement of my mandibula and vegas nerves along with the carotid. Part of the broken bone was impinging my right side Aorta. My doctors found out later that the broken edge of one portion must have been scraping the ‘carotid body’ because it’s been ruined and no longer works. My CT scan showed multiple TIA’s and migraines (what caused the PTSD type responses). All these things add up to a longer healing but two years later I sang :smile::smile::smile::smile::smile:
My fingers are still healing, I had multiple swollen joints in the midst of all this (possibly the mandibula nerve caused this) - so I was unable to play my string instruments and piano that required a stretch. When you add this all up - almost all my music was taken away, but I could still compose. So I did. I already had a sound studio and several awards for my film scores. An amazing composers heard what had happened to me and encouraged me to keep composing - I needed that.

I’m hoping this info will pay this forward and encourage you. I’m hoping it will encourage others.

I was an extreme case, but I am getting my life back and more.

Find any musical outlet that will work for you. It is important to remain patient during this time, so that you can sing again.

Find ways to let your family know you love them. Tell them you are doing the best you can, but you need their help.

Have ready made ways for communication so you can save your voice. You may need to include an explanation that surgery is just part of the journey and surviving a long term throat invasion takes time.

Doing these things take time, but the time you gain later will more than makes up for it.

Swelling can cause scar tissue. I highly suggest looking up contrast therapy and perhaps do this for your throat to help eliminate swelling. Ask your doctor about the use of pain relievers that will reduce swelling. Ask your doctor about taking cyclobenzaprine at night to relieve tight throat muscles (it’s out of your system in 6 hours).

This is a journey. You can still have joy in the midst of it. I’m sorry this response is so long - and sometimes meandering, but so was the journey. It will get better! It will eventually be great :blush:
Best Wishes and God Bless,
Music Geek


#8

I appreciate all the knowledge. Praying that you continue to be able to use your voice and have relief from any pain you experience/experienced. It’s so weird when I try to explain it to someone! I may be reaching but I just need answers as to what’s going on with me. My ENT can’t deny the fact that there’s something wrong with my voice because you can hear it. Lol! He says that if my ultrasound doesn’t show anything he’s going to refer me to a otolaryngologist. I thought that was an ENT. Sooo… I started doing my own research with my symptoms and stumbled upon this forum that mentions ES, and here I am. Just desperately wanting my voice back. Also makes you see how we take advantage of things that you never thought could possibly be gone forever.


#9

Hi amanda81 -

An ENT is an otorhinolaryngologist. So technically, you’re correct. You will likely be referred to the laryngology specialist in the ENT practice. Within many ENT practices, there are several doctors who each specialize more specifically in the ear, nose or throat. For example, my ES surgeon (Dr. Samji) is a throat/neck specialist & skull-based surgeon. When I developed Meniere’s Disease, he referred me to one of his associates who’s the “ear guy” - otologist.

:blush:


#10

My ultrasound came back normal so I guess it’s on to the next step. I had my teeth cleaned today and asked them to do a panoramic xray just to see if it would show anything. None of their staff nor the dentist had heard of ES.


#11

Hi Amanda81,

Your right styloid process (the only one visible in this picture) looks very thick & oddly curvy. I can’t tell about the length but a very thick or oddly curved styloid of normal length can also cause ES symptoms & be classified as ES. It’s entirely possible that you will be diagnosed w/ ES once you see a knowledgeable doctor & get a CT scan w/ styloid protocol.

I hope the otolaryngologist you’re sent to does have some good experience in that area. If you don’t get good support from that doctor, you can always get a second opinion from Dr. Samji or Dr. Cognetti by a phone consultation (there is a fee for this). You will need to email one or the other’s ofc to set up an appt & send your CT scan & report once the appt is made.


#12

I guess I don’t know what to look for lol! I appreciate all the help!! I just don’t want to spend years searching for answers if I don’t have to! Really! I thank you so much!


#13

If I were more tech savvy, perhaps I could add an arrow to show you where it is in your x-ray. It’s the bone that runs in a diagonal direction to the far left of the picture. It angles kind of from below where your ear would be toward the angle of your jaw.


#14

If it’s what I’m thinking I see something on the left also?!? If you zoom in on the pic?!? Idk. :woman_facepalming:t2:


#15

Glad you pointed out the need to zoom in. Yes, those are your styloid processes & they both look thick to me. Your left one is pretty angled in toward your jaw & your right one has a funny squiggle at the bottom. Bearing in mind that I’m not a doctor, I can only tell you what I see, but it does look suspicious.


#16

I would include the xray pic also when you go for an appt. or send scans & reports in? It’s good evidence to back your case. Good luck!


#17

I just got my first “I don’t think you have eagles” diagnoses. Based on my pano xray from the dentist. My ENT said, “your styloids look normal and it usually doesn’t affect someones voice and that styloids only cause problems if they connect to the hyoid bone.” I know different but wasn’t going to argue. I’m getting a referred to a Laryngologist at Vanderbilt and my apt is on the 24th.


#18

So frustrating, I hope that your next appt. goes better!


#19

Jump on here next Thursday and let us know how the visit goes. It’d be great if he wrote for a CT scan which gives the best picture of things. I was lucky that my PCP was very compassionate about my “clicking problem” as we called it and she wrote an order for a CT at my request after I found this site. I worked hard to find a diagnostic center in my area that billed as an “office setting” (insurance speak for co-pay needed versus having to pay full price for the test and it going toward your deductible) and walked away with a disc and paper report for only $40 in my case. STILL with that gem in hand I was told by an ENT that has done ES surgeries before that I did NOT have Eagle syndrome and my click was not caused by the calcified ligament. Yet here I sit 8 days post op with my feet up recovering from the removal of said ligament and I couldn’t force/make my body generate that click if my life depended on it. Not only did I have to go to my first appointment with my test, I had to seek out another doctor and schedule a second appointment at the same institution that was willing to investigate my case with genuine concern to eradicate my symptoms. He was indeed successful. The hardest part of this process for most of us is getting that diagnosis. Maybe it’s ES, maybe it’s something else. You’re only at the beginning and we’re here for you either way!


#20

Thank you so much! I really need the encouragement! I would at least like to get a good ct scan of my styloids and ligaments before its completely ruled out. Nobody WANTS eagles. Lol. I just WANT answers. To tell me it doesn’t affect ones voice isn’t true. When I’ve read and talked to people on here who clearly say it does and have been diagnosed with it. It hurts every time I swallow and it still feels like there’s something stuck in my throat. I have a constant dull ache on the whole right side of my jaw, neck, throat, and ear. These past couple of days I’ve been having a tough time swallowing pills. :(( Anyways… I know, broken record, just want some answers.