Voice change/problems

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