Pro singer just diagnosed! So many questions.. (and want to connect with other singers!)

General
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Hi everyone, I’m new to the group and just (finally) got a diagnosis that I have the elongated stylohyoids (3.2 left and 3.1 right). I’m so grateful this forum exists - I’ve been reading & learning a lot, and it has been very validating as well. I’m feeling a mix of fear and relief, because I have been trying for many months/years to get a diagnosis for chronic extreme voice pain, voice changes (singing and speaking), muscle tension dysphonia, chronic sore throats and chronic throat tightness & cough. I have had a LOT of tests & exams - had seen pulmonologists, allergists, gastros, multiple big name Hollywood singer ENTs and everything was always normal - “perfect” vocal cords. I had asthma tests, blood tests, allergy shots, x-rays, voice therapy & larengyeal massage, acid reflux medication, diet changes, acupuncture, getting rid of our cat who I’m allergic to…the list goes on…no diagnosis and nothing helped.

I was diagnosed with muscle tension dysphonia which led to me trying voice therapy. The techniques to help felt really minimal to me as a professional singer, and didn’t do much to help the tension or SHARP pain (especially when talking). I could sort of fake my way through recording 1 song, but it was extremely uncomfortable and by the end I would feel like I was being strangled from all the tension. I usually sing soprano and can sing very breathy and delicately up there…all of that went away. High notes are painful and cut out, especially depending on which way I turn my head. I knew there had to be something else underlying all of this - a problem with a ligament or muscle…it truly felt like I ripped something. The pain would also radiate to my teeth & jaw and I was convinced there had to be a nerve element and it couldn’t all be MTD. I’ve been singing professionally for 15 years and know my instrument extremely well. It just wasn’t working the way I was used to. All that said, I was starting to feel truly hopeless and doctors would say things to me like “Maybe it’s just stress” and I would go absolutely insane.

2 weeks ago, my newest ENT suggested I get a Neck CT to rule out Eagles Syndrome. I had NEVER heard of it despite many months of deep googling issues that can affect the voice beyond the vocal cords. Once I started reading about Eagles, I had a crazy instinct that THAT was what has been affecting me…even though it is so rare. I just had a feeling and as much as it’s not a great diagnosis, I also felt a sense of relief that I could be on the path to figuring this SHIT OUT!! Turns out I have the elongated SPs…and it pretty much explains everything.

I’m a professional singer so this is particularly devastating on that level - it has been uncomfortable and painful to talk or sing ever since February. My voice has sharp pain up in the area under the jaw, up to the side of the hyoid, and my voice is extremely croaky, and easily fatigues. It’s hard to even talk on the phone. I KNEW the changes to my voice and pain were not normal, but this ENT who ordered the CT was the first person that ever suggest ruling out Eagles. I’m grateful that she knew about it. I’ve been singing for 20 years and have never had an issue like this where my vocal cords were perfectly healthy but I had SO much clearly wrong with my voice.

The diagnosis from the CT and finding these forums on ES have given me so much validation. I have known something was not right and it was starting to seem like I was crazy. It seems everyone has varying symptoms, but a similarly frustrating experience working towards a diagnosis. I am reading these forums and learning so much.

Here are some questions I have:

  1. My CT says the SP’s are elongated, but nothing about the effect on the nerves or ligament. Did anyone found out additional information from an MRI? Is it suggested to get an MRI after the CT? CT report says nothing about the ligament or calicification, or which nerves it’s messing with.

  2. I know 3.2 and 3.1 isn’t THAT long…has anyone had them causing major voice problems & removed at that length?

  3. Has anyone had relief with just pain management and injections? Medication? It seems surgery is really the cure. In the surgery, I’ve read the ligament usually gets removed. As a singer this REALLY alarms me. What happens to the ligament/muscles attached to the SP? Can anyone speak to why we do not need this ligament, or if the removal of it affects speech or singing voice? I’m really concerned about this.

  4. I am in California and have read a lot about Dr. Samji. I’m going to get a consult with him, but I’ve read on the forum that he wants a CT *without contrast. This upset me because I got a CT with contrast, that shows the measurements of the SPs, and I really don’t want to have to get another one bc of radiation and cost. Can anyone who has seen Dr Samji let me know their experience with this?

The ENT who helped me find this does not actually treat it. She suggested I see a oral maxillofacial specialist who doesn’t take my insurance…so now I’m on the hunt for an expert. Is it best to see a maxillo or an ENT for this? I’m going to talk to Dr. Chhetri and Dr Mendelsohn @ UCLA. Can anyone tell me about their experience with either of them treating your Eagle Syndrome?

THANK YOU SO MUCH - I really really appreciate any advice. This forum is a godsend. I finally have a diagnosis (I think) but can’t help but feeling that I’m back at the beginning of a long journey…as a singer, I’m devastated and just want to do anything I can to sing freely and pain-free once again.

Lastly - I know there are some other people on this forum who are singers/musicians. I would love love love to talk to you more. I’m so worried that my singing career is majorly threatened…it’s my entire life, livelihood and identity. I really need some hopeful recovery stories <3

Thank you x

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Hi jessicarae87,

I’m going to answer your questions in the order in which you asked them. I’m sure others will also give you input & hopefully some of our forum members who are singers will chip in, too.

  1. An MRI shows soft tissues better than bony structures, however, it does not show nerves, & it’s the nerves being impacted by your styloids that are producing your symptoms. In my opinion, an MRI is an expensive test that won’t help w/ further diagnosis in your case. A seasoned ENT such as Drs. Samji, Chhetri, or Mendelsohn will be able to look at your CT scan & see ligament calcification as well as styloid elongation, angle, thickness, etc., even in the absence of mention of those things on the radiology report.

The best way to determine the nerves most likely being affected is by the symptoms you have. The cranial nerves have pretty specific functions & affect reasonably specific areas of the body. Doing a bit of research on the following nerves should help you discern which are most likely irritated by your ES - trigeminal, facial, glossopharyngeal, hypoglossal, accessory & vagus. The Two Minute Neuroscience Series on YouTube covers each nerve individually in short, understandable videos.

  1. Don’t know the answer.

  2. Injections usually consist of a combo of cortisone & lidocaine & are effective for short term pain relief. This is not something you can have over an unlimited period of time. Nerve pain meds can help reduce pain but they do not solve the problem which is nerve irritation from elongated styloids. Only having them removed will cure the problem.

  3. Dr. Samji may accept your CT w/ contrast, but that’s a question you’ll have to ask him/his MA.

I hope this info helps.

:hugs:

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I don’t have a ton of advice for you, but I’m a singer! Not pro, but extremely active in a couple of competitive singing groups, so my vocal symptoms are THE thing that I want answers for.

Basically, Labor Day of 2017 I noticed a big vocal change. Producing sound was just… harder than it usually was. I waited a few weeks assuming it was allergies or a little virus. When I went to see my primary care doctor, she basically laughed me out of the room.

I’ve seen several ENTs at this point- did the reflux thing, the muscle tension dysphonia thing, changed up all of my allergy and asthma meds, NOTHING helped. The last ENT I saw before I found out about ES told me that I was “what they would have called hysterical 50 years ago” and that I should probably see a psychiatrist (I do, for other reasons. :P)

Finally sometime last spring I ran across an article about a singer with ES and it was the only thing that checked all of the boxes. I asked another ENT if it was possible, he looked perplexed but said yes. I got a lidocaine shot which helped immensely, but the surgeon this guy directed me to (who officially diagnosed me) was not experienced enough at ES cases for me to feel comfortable having him operate. Long story as to why, but I ended up losing my health insurance right after that, so I’m just now getting back to trying to treat this thing. Sucks, because at this point speaking is hard much less singing!

Anyways, I have an appointment with Dr. Eusterman in Denver on the 17th, which hopefully will be helpful because he is an author on an ES paper. It’s just a telephone call because of COVID, so I expect I’ll probably have to get another CT scan (mine is 2 years old) and probably see him in person before we can think about scheduling surgery.

Sorry I don’t have any actually helpful advice for you, but we may be going through this at the same time so I’m more than happy to be some moral support (I know I need it too at this point)!

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@kittchenita,

Welcome back! I’m sorry for the frustration you’ve experienced both from medical & insurance standpoints. We currently have a doctor (Dr. Hepworth) on our list who has done several ES surgeries for our forum members in CO. They have all raved about him. It would be worth your time/$ to get an appointment w/ him. That said, there’s nothing wrong w/ seeing Dr. Eusterman. We would love to have another CO doctor on our list who is familiar with ES & experienced in doing surgery for it. Please let us know what you find out.

Contact info: Dr Hepworth, IMMUNOe, 3150 E 3rd Ave, Denver, CO 80206 (303) 224-4711 http://www.immunoe.com

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Hi! Wow, thank you so much for sharing this with me! It’s so comforting to find people who understand. Our experiences sound so similar!!! I gradually noticed more and more little changes and tension in my voice over the last year and a half I would say…culminating in being in insane pain when I talk and my singing being very affected since this February. Sounds like we had a similar journey…I did EVERYTHING possible for allergies, tried reflux diet/medications, got a bajillion other tests, vocal cords always perfect, voice therapy didn’t relieve the pain…you know the story. I’m so relieved for a diagnosis but also very worried. I’m processing some anger that 6 months ago a big-name Hollywood ENT refused additional imaging! I had asked for a CT and they said it wouldn’t give us any additional information. I can’t help but think I could’ve discovered this 6 months ago if they had only known about this or really listened to me more. But here I am today, thankful for the ENT who DID think to rule it out. I had never heard of it before and I really went down the google rabbit hole about muscle tension dysphonia and anything else that can effect the voice. My primary care doctor dismissed it eventually as “stress!” - she made me cry! I was like…REALLY!? I’m a professional singer. I know when something is wrong. And I know the difference between stress/anxiety and what I am experiencing. Who in their right mind wants to make stuff like this up and have to see a million doctors? Ugh - the gaslighting was real. I’m so heartbroken for everyone who’s had to fight their way to a diagnosis and have doctors not really believe them, listen or know more. This whole experience has really reminded me to trust myself and not give up.

Anyways!! I would love to stay connected on our journeys :slight_smile: I’m really grateful for the forum. I’m glad to know the lidocaine shot gave you some relief…I’m hoping to try it out before consulting more about surgery. I really just want some relief from this constant pain when I talk - oof it’s exhausting. Did the shot have a steroid too? Did it have any other weird affect on your voice, or it was awesome and just took away some pain?

I think I may have read the same article as you! Was it this one? http://www.atempovoicecenter.com/blog/2018/9/19/eagle-syndrome-a-rare-bird-indeed. I read this after the CT was ordered, when I first learned of Eagles, and it blew my mind how much it sounded like my story. It gave me an instinct that I finally had an answer and sure enough my ENT called me a few days later confirming it. I’m actually trying to reach out to the woman in this article to talk to her! I’ll let you know what I find out.

Thanks so much for your message. It’s so horrible to be a singer and be dealing with such a rare, mysterious thing. I just daydream about singing freely again. I know I will never take my voice for granted again!! Praying for healing for myself and everyone dealing with this!! Good luck with your appointment and keep me posted! :slight_smile:

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Here’s another article you may be interested in jessicarae: https://www.washingtonpost.com/national/health-science/medical-mysteries-what-was-wrong-with-the-professors-voice/2015/02/23/0ec6b52e-a5a2-11e4-a06b-9df2002b86a0_story.html

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We’ve had a couple of other professional singers on here before, Musicgeek & Benyon, although that was a couple of years ago. If you search for ‘professional singers’ using the search function it’ll come up with a few discussions that you might find helpful.
Can’t really add any more to what Isaiah’s already advised you! But hope that you can get some treatment soon, Dr Samji is very experienced if you decide to see him!

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They do sound similar! I remember distinctly crying when my expensive voice therapist basically told me that I had graduated from voice therapy but I didn’t feel any better. And I can’t tell you how frustrated I was to continue to get “your vocal cords look perfect” type comments. Doctors always thought my voice sounded fine, but like… “fine” isn’t how my voice normally sounds.

I’m also working through some anger at doctors, especially the ones who got defensive when they couldn’t figure out what was wrong instead of working towards a solution. I know my body and I know my voice and they should have listened when I told them there was something wrong. I definitely have lost so much trust for doctors because of this.

As far as the lidocaine shot goes, it’s definitely not something that works instead of surgery. For me, it allowed me to use my voice a little more normally because I wasn’t in pain anymore. Mine lasted about a week I’d say. I don’t think it had any steroid component, but again doctors tend to underestimate my scientific competence and don’t always share everything. For me it was mostly a diagnostic tool (i.e., your styloids are long and if the lidocaine improves your pain it’s likely ES), but I’d like to have at least one more to help me get through until surgery since talking hurts so much right now.

The article you shared was exactly the first thing I found and it did sound so much like me that I was pretty convinced that was what was going on. I used the Slicer program to make a 3D rendering of my CT scan, noticed what I thought was a calcified ligament, and then mentioned it to my doctor the next time. I was so glad he didn’t just brush me off, although the person that diagnosed me was still pretty hesitant about whether surgery would help. I think he just isn’t super familiar with ES, so I don’t really blame him.

@Isaiah_40_31, I’ve tried to get an appointment with Dr. Hepworth, but I’m currently on Denver Health Medicaid which he doesn’t take. I’ve tried to switch to Colorado Medicaid which he does take, with no success. If it seems like Dr. Eusterman isn’t familiar enough with ES to do the surgery well, I’ll definitely keep working on trying to switch my insurance so that I can see Dr. Hepworth. Otherwise, I’ll keep you all posted on Eusterman and hopefully add a CO doctor to the list.

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Omgg yep - same. My voice therapist said “You graduated!” and I was like…wowwww. Definitely many tears haha. All I learned was to blow bubbles into a straw and it never helped the pain. I felt so disappointed. Yes the 3D Slicer program is amazing! I’m glad someone finally listened to you. I’m going to try the injections soon, hoping it will at least help with pain relief while I consider potential surgery. It has been reiterated to me by some other voice specialists that the surgery is really risky, especially for singers :frowning: Said not to do it unless it’s really a last resort. That worries me but I have also seen a fair amount of success stories.

Best of luck with finding the right doctor!!

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Thank you so much! The forum has been incredibly helpful :slight_smile:

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kittchenita,

I hope Dr. Eusterman is a compassionate, knowledgeable & experienced ES doctor. You’ve waited long enough to get this taken care of. Now it’s your turn to step onto the road toward healing. I’m sorry about the insurance situation w/ Dr. Hepworth. I worked for my brother-in-law, a pediatrician, many years ago. He took CA’s version of Medicaid but in CA there is just the one plan. Interesting that you have a city specific version as well as a state version in CO.

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Hi Jessica,

I can absolutely relate to what you are going through! Although I’m not a professional singer, I did a great deal of singing in my twenties and early thirties (mostly opera and musical theatre). My voice started failing in my late thirties, and unfortunately, I have never regained the vocal power and strength I once had. Like you, I experience constant chronic pain and vocal weakness, which has most recently spread to include my tongue, neck, upper back and shoulders. I also have brain fog, dizziness and chronic headaches, which I believe is related to the Eagle’s Syndrome.

I made the mistake of having the ENT who diagnosed me with Eagle’s Syndrome perform a partial styloidectomy on me. He had never performed this surgery before, and I think he just wanted to add it to his resume. THe surgery was a failure and I never improved. Actually, I’m fairly certain there’s probably scar tissue growing in that area causing a worsening of symptoms.

My advice to you would be to seek out an experienced surgeon, such as Dr. Samji, for a consultation. I am currently in the process of making an appointment with him.
My only hesitation is my current health insurance doesn’t cover eagle’s syndrome, which will make it a very costly surgery for me. However, the thought of finally being rid of chronic pain and regaining the ability to sing again is so exciting!

This forum is a great place to start! I wish you all the best in your journey to regain your singing voice and feel better!

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Hi Cat1,

I don’t know of any health insurance that covers Eagle Syndrome because there is no procedure code for it. The surgeons have gotten wise & bill ES surgeries as either styloidectomies or mini-craniectomies or something similar which insurance will cover. I expect that Dr. Samji or whomever you see will be able to come up with a procedure code that your insurance will cover. If not, I know Dr. Samji used to offer a cash price that was signifcantly lower than the amount insurance is billed. This is a common practice among doctors.

Please keep us posted as to your progress in getting help.

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Most surgeons have figured out the coding on this. My primary diagnosis was Glossopharynheal Neuralgia G52.1and 352.1.This was on my surgery scheduling order.These codes did not require a pre-authorization under my plan which I was surprised by. My final operative report listed the primary diagnosis above and Eagles Syndrome as #2. I think the coding for primary diagnosis is key to surgery authorization or for insurance to pay.

Procedure performed: Left posterior mini suboccipital craniectomy with styloid bone and decompression of glossopharyngeal nerve.

  1. You cannot see nerves on CT or MRI generally. I would assume that the length probably indicates the calcification of ligaments. Not sure why radiologist didnt call it out. Some don’t think it important (radiologists).
  2. 3.1 and 3.2 meets the criteria for elongated (over 2.5) styloid process. My CT scan showed about the same. Once he got in there, they were longer. CT scans only shows slices of neck and interpolations between slices has some inaccuracies.
  3. I 've had injections and a whole range of things that only provided temporary relief. I think the the ligament removal doesnt impact in long term. I have neck instability and I have not noticed any difference after 12 weeks out on surgery.
  4. Send Dr. Samji you ct on disk and see if he wasnt you to order one without contrast. He prefers w/o but may accept with. depends on the quality of the scan.

Dr. Samji does external which is easier recovery. He has done over 450+ of these procedures and quite skilled. Id ask that question at the docs at UCLA. Not sure where you live in CA but if I lived in northern, I wouldn’t travel to UCLA. Ive also had surgery in the past at UCLA in the hospital and outpatient. It is a teaching hospital. That usually means they have green people in OR assisting or even doing procedure as a learning thing. Given I had another bad experience at another teaching hospital (worst in my life) in Seattle, Ill never go back to one. Outpatient surgery was fine at UCLA and it was done by a neurosurgeon. Ive had one side done by Dr. Samji. He will be doing the other side. I feel very confident in his skills. So much so, I flew in from out of state. I also look at where the trained and went to school and past work. I prefer docs trained on east coast personally.

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Hi Jessicarae87,
I sing. In the shower. Badly. So I can’t help with the vocal subtleties specific to your profession, but I definitely had some presurgical voice changes – felt like my voice was resonating differently on the two sides of my throat. I agree with others that you are unlikely to learn anything helpful with MRI. For me, it did take a few months post-surgery for my jaw to lose its aches when I talked for long periods, but I did not experience any voice change from surgery. It sounds like you did an amazing job in your research! Hope you find answers quickly.

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Hi! Oh no, I’m so sorry to hear that your surgery caused some other issues. That’s incredibly disheartening. I hope Dr. Samji can help you! I’m getting in touch with him as well. Interesting about the insurance part…I was extremely relieved that Dr Samji takes my insurance, but if the insurance covers the procedure is something I didn’t think to look into…yikes! Thanks for that information and best of luck!!

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Wow. That Wikipedia article mentioned in the story was changed because of me. What it used to say was a bunch of contradicting things as well as that ES didn’t affect the voice. While I was changing tge wiki page a Wiki administrator started writing to me and asked me who I was, and why did I consider myself an 'expert. I told him how unscrupulous people kept changing the article to cover their mistakes and even though I can’t afford to hire people to change it for me, like what I suspected was happening it didn’t mean I would give up.
I was even told after the first surgery - where I had a huge voice improvements that ES didn’t affect my voice. I told everyone who would listen that vocal folds do not exist in a vacuum and making such conclusions was ridiculous when ES is so rare.
I’m so sorry for your troubles. I’ve dropped out of this group for a while. I’ve had great losses because of ES. I’m not singing currently. I’m not playing currently. That doesn’t mean it won’t happen in the future. My doctors have been repeatedly telling me " You need to understand that you are Unique". It appears the right side ES bone was broken inside my neck after a car’s shoulder belt broke it. My right carotid body and right submandibular salivary gland are basically missing after presumed damage from the broken bone.
When I dropped out from this group I was told I would never sing or play again. I then went home to watch the youtube posted zoom meeting I missed during my appointment and found out a big wig listened to one of my sketch tracks - not the finished one and tore me apart verbally and posted it. It was a very hard day.
I’m telling you this because I want you to know that even when you think you have lost everything - you have not. That no one knows the amazing healing abilities your body has and God gives. I had TIA evidence in my scans. They were all over the place. Last Thursday my patent was issued. I started the process before my surgeries and wrote rebuttles about 15 times over the last 6 years. No one can decide how well you can recover from multiple TIA’s.
That person who tore me apart in the video? We are friends now. He loves my music and he’s asked me to write a music theory blog for his site. He felt so bad about the mix up that he remade his entire website. I have a studio and have recorded myself a little since the surgeries. I am still healing. The technology that is available today is amazing. I had a track where I sang a major chord in the end. The publisher decided he wanted my song to end in a minor chord. It meant I had to sing a 4th higher than what I am now capable. At that time the tech to do that would make my recording sound bad. Before my due date my software had an update. That update made it so I was able to fulfill the publisher’s wishes.
Singers - you have more talent happening n your heads than you will ever know. Your practice of music created more routes in your brains. Your abilities with timeing is within milliseconds when non pro musicians can be off by full seconds simply because you excersized your brains snd your braindms changed at a young age, and it cannot be reproduced after that young age. There are brain studies proving this as recent as 5 years ago. Your ears pick up more nuances than other people. I was asked by an attorney to see if I could figure out ‘speaker identification’ a couple of years ago. We’ve all had an “education” with ES. We have lived physical changes while being told we are crazy. We can see anatomy pictures and feel them. Just a little voice study combined with studio/frequency study and you can be expert witnesses for court cases. That case I was asked to help? The defendant confessed after reading my report. The man who had lost his family home because of identification theft was very thankful…
I am still learning who I am after “losing everything”. I do know this: Many people prayed for me. I was given the power to be a blessing. My story isn’t over. Who I am isn’t gone.

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Thank you so much for your amazing post, MusicGeek! So good to hear from you again but sorry for what you’ve been through. It’s great to hear how you’ve turned your misfortune into a way to help others.

So glad your patent was granted & you’ve mended fences w/ the “big wig” & now have a good working relationship. That’s certainly the icing on the cake in that relationship!

God is good & has caused things to work together for good in your life. That’s what happens when we trust Him - no matter what.

:hugs:

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I’m a pro singer (or was) and just found this thread. Happy to connect with others. I think I’ll search for other posts and maybe start a singer thread.

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Hello, What your going through is real and I know your struggle ! I am a professional singer was gigging 3 or more times a week. I had to stop all performance due Es . I went to several Docs over 10 and had to diagnose myself ! My vocal problems were mostly tightness and fatigue but I was still able to sing . My other Es symptoms are what took me out facial nerve pain head pain occipital nerve pain and my jaw . After realizing I had Es I I’m down very little singing or much of anything out of fear of permanently damaging nerves . My plan is to chill and don’t aggravate nerves and tissue get surgery and rebuild . My recommendation to you is stop singing rest and get surgery otherwise you may do permanent damage. I know how your feeling and I’m sorry for you it’s soooooo frustrating. Good luck I hope we find answers and get well together !!

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