Update 2: Nov 20, 2017
Surgery to remove the vocal cyst is scheduled for January 24, 2018, or sooner if someone cancels and they can squeeze me in before then.
Last Thursday I saw an otolaryngologist in Oakland. As he and a young resident entered the room, I was both nervous and excited to finally get some answers. The appointment started out like they usually do... I felt the clock ticking, like I had to convince them of the problem in a couple of minutes or they'd just shuffle me over to speech therapy and call it a day. I brought all of my previous laryngoscopy DVD's and they asked to see my most recent. As they watched the video, they located the cyst and also noticed some asymmetry in the left cord in a still photo.
Without much hesitation, the doctor said he could remove the cyst if I wanted him to, but cannot guarantee 100% that surgery will fix the problem. I was hoping for more clarity than that. However, as I described how the cyst is affecting me and elaborated on my theory, the doctor said, "It's best to trust how you're feeling, especially when it comes to how it practically affects you, and the way you describe it makes sense...". He said it's possible that in certain shapes or during certain kinds of tension, the left cord might brush up against the cyst, causing the paralysis.
I can't tell you how good it felt to hear him say that. For almost two years the doctors have had no answers other than "you're stressed" or "you have some reflux". I finally found a doctor who listened and was willing to take a closer look. Much to my gag reflex's chagrin, I had them scope me one more time just to make sure things hadn't changed since August. Still there, and more ready to come out than ever.
There is a 10% chance the cyst comes back after they remove it. There is a 1-2% chance things go terribly wrong like they did for Julie Andrews. Recovery will most likely demand 3-4 days of vocal rest and then anywhere from 2-10 weeks for full recovery. The doctor said we won't know exactly how long it will take to recover until we see how surgery goes. Even though I should be able to produce sound within a few days after surgery, singing and talking well could take time. I imagine I might need some more speech therapy, but I'm not sure.
I got what I wanted. Yet, as I processed things over the weekend, I had to reckon with the fact that surgery must be my decision. When something's messed up inside, it's easier to wish for the circumstance where a doctor says, "we have to operate on this in order for things to get better; don't worry, son, I'll fix you up". Take the decision out of my hands, you know? In my case, however, it's totally up to me.
I could probably survive living in this discomfort and even continue singing to some degree, but I think it's worth getting the cyst removed. Still, it's tough not knowing exactly what the outcome will be, and it's easy to be bummed out about the two and a half month wait. If this is what it takes to get better though, a few months of waiting won't really compare to the lifetime of singing I'll hopefully have after the surgery. So now I wait, and figure out how much I can accomplish (or not accomplish) before then.
Thank you so much to those of you who have sat with me, listened to me, prayed for healing, and encouraged me. I didn't realize how alone I felt until last week when I posted that blog. I was in a pretty hopeless space, and your love lifted me. Something shifted inside of me as you reminded me who I am and what's important. Thank you, thank you, thank you. I have hope again. Please continue to pray, and I'll talk to ya soon.
Update 1: Nov 7, 2017
I don’t know what I’m going to do if I can’t figure out what’s wrong with my voice... singing hasn't been fun in a long time.
What I’m about to share is very personal, health related, and kind of long winded, so prepare yourself ;). There are reasons why I’ve been so slow to release any new music or play many shows in the past two and a half years. But it’s not out of lack of desire, passion, personnel, or even new material. As many of you know, my wife and I left Ohio in summer of 2015 to move to San Francisco. I had taken a job as a Music Minister at a new church, and Jocelyn and I were excited to experience a part of America we’d been dreaming about for ages.
My job fell through within a few months of being here, and we needed to decide whether to stay or move back to Ohio. We decided to stay, and we both hustled to find work; I taught guitar lessons and worked at a coffee shop in the Tenderloin to keep us afloat during the transition. Jocelyn found a job doing customer service and eventually marketing for a local, online retailer of neckties and bowties. After being underemployed for months in the most expensive city we’d ever seen, I found a new job, and we started catching up with life.
In all the transition, I started experiencing some major vocal and throat discomfort. I had tons of post-nasal-drip and irritation in my throat. My voice would often cut out during conversations and during performances. During one performance, I completely lost my voice. During another, everything felt so constricted I could barely sing. My voice became fatigued rapidly, and I didn’t know what to do. When I finally shined a flashlight light back there, I noticed (with horror) several huge bumps on the back of my throat. I thought it was cancer at first, but later found out it is called cobble-stoning, a condition where parts of the throat swell up due to drainage (they haven't disappeared since).
I scheduled an appointment with Kaiser San Francisco's Head and Neck department. My first ENT agreed with my primary physician’s prognosis: allergies. I found this strange, because I’d only ever had allergies a few times in my life, and when I did it was a runny nose, not Post Nasal Drip. They prescribed allergy pills and a whole nasal rinse routine, and I did that for a couple months. The voice issues continued and even worsened. The next year and a half resulted in 6-7 visits to the ENT for multiple laryngoscopies (where they stick a camera through your nose, down your throat), a visit to the allergist, speech therapy, finding out it was not allergies but rather acid reflux, then overcoming acid reflux, stress, and muscle tension. To no avail.
***In the meantime, during our first trip back to Ohio that summer (2016), I lost my voice completely out of nowhere, and I spent our week there struggling to communicate with family I hadn’t seen in a year. It took several weeks to get it back… worst case of bronchitis I’ve ever had. This bronchitis episode actually happened on two separate occasions during travel back to Ohio. There may be a connection to these episodes later on in this note.
I eventually saw another ENT, who finally stuck a camera through my nose and down into my throat (an unfortunate ordeal for people with bad gag reflexes) to see what was happening. He alluded to the fact that I probably have silent reflux – a form of acid reflux. The thing about silent reflux is that it typically doesn’t burn like GERD does. With silent reflux, instead of just coming up into the esophagus, hanging out there and causing heartburn, the acid actually makes its way up further into the throat in a quick and stealth-like manner. It doesn’t hurt initially, until the acid starts eating up at the lining in the throat and causes irritation. Simply put, components of the acid can stay in the throat for several days and can then be chemically re-activated by the food that you eat, causing even more burning. The body protects itself through post-nasal-drip and muscles in the larynx tightening. The post-nasal drip weighs heavily on the vocal cords, causing fatigue and additional irritation.
The notion that I had reflux had never crossed my mind, but it started making more sense the more I learned about it. I’ll admit; I was a stress eater. For years it was not uncommon for Jocelyn and I to share a late night frozen pizza, or for me to wake up in the middle of the night and consume a spoonful or two of peanut butter (weird, I know). The ENT recommended I start taking Proton Pump Inhibitors (PPI’s) to get control of the reflux. I was also curious if I was somehow gluten intolerant, and so I got an allergy test as well. Turns out I’m not allergic to anything except dust mites, and everyone is mildly allergic to dust mites.
While on PPI’s, some of the burning sensations eased up, but to be honest, singing didn’t really get easier, as I was still experiencing a lot of post-nasal-drip and my voice was cutting out a lot, seemingly at random times during conversation or singing. The thing about PPI’s is that they neutralize the acid in your stomach. So you can still have acid reflux, it just won’t burn as badly. BUT, when you use PPI’s, it decreases your stomach’s ability to digest well, and good digestion is crucial to good health. PPI’s are not a long-term solution.
After three months, the doctor recommended I wean off the PPI’s. The first two weeks were hell, as my body was going through withdrawal and over-producing acid to compensate for the imbalance, causing increased acid reflux and irritation. During that time I had an epiphany while reading a book called “Dropping Acid”, which explains that in the long run you’ll make it worse by taking PPI’s (cool name for a book, eh?). Acid reflux is very often caused by having too little acid in your stomach. The poor digestive environment causes gas buildup, and the pressure from the buildup causes the stomach sphincter to tire and loosen, allowing acid back up into the esophagus and throat. You can often fix your digestion and reflux by altering your diet, eating habits, and taking probiotics. As I altered my diet and started home remedies like apple cider vinegar, eventually trying the Paleo autoimmune protocol, I saw incredible changes in my digestion and reduced acid reflux. Less reflux meant less post-nasal drip, and ultimately less fatigue
For much of this time, I was also seeing a holistic voice coach, who was helping me correct some of the bad habits I picked up along the way. As my muscles in the larynx tightened to protect from the acid reflux, I developed some bad habits of pushing the sound out, using muscles rather than air to phonate (make sound). She essentially helped me learn how to breathe again – truly life-changing stuff. Relearning vocal techniques and ensuring proper vocal hygiene have definitely made the pain more bearable, especially since my jobs as a music minister, guitar teacher, and performer have required me to sing or talk several times a week for the past two years.
Sometimes things got easier, but I was still having trouble not just with singing but also with talking. When my voice cuts out, it irritates and wears out my vocal cords. This fatigue is different than the fatigue caused by post-nasal-drip. It’s like you’re winding up to pitch a softball and someone hits your arm while it’s in motion and throws everything off. You then have to try again, adjusting things so as not to be hit again. It’s probably a bad analogy, but that’s been my life for ages now -- this odd cutting out of the vocal cords, mostly while talking. A feeling that something is stuck in my throat. Tension in my larynx.
When I went back to the ENT for a checkup this past August (2017), he noticed some kind of lesion or cyst behind/underneath my left vocal cord. I thought, “Yes! Finally some answers.” But the ENT said he didn’t think it was affecting my cords, and he was hesitant to operate. He encouraged speech therapy and also set up an appointment for me to see another ENT in Walnut Creek. The second opinion was the same: “I don’t think it’s affecting your cords. Just do speech therapy and come back for a checkup in a few months…”. As an aside, I went back and looked at the videos from my original laryngoscopy, and the cyst has been there this whole time, he just didn’t see it the first time. To me, this explains why the problem has been there for so long.
My speech therapist simply thinks I should move out of the city – that I’m too stressed. I try to explain that my stress mostly comes from the discomfort in my voice, not the city itself, but she just thinks I need to get out of here. How can moving guarantee that my voice problems will go away? That doesn't add up.
I’ve been doing the hard work of trying to get better, and even at my “healthiest”, things are still so difficult. And that’s the thing: I’m healthy. My body feels good. My breathing is good. I eat well. I exercise. I run. I bike. I skate. All of the pain and discomfort is located in my larynx. It’s like I can feel my cords hit the cyst when I’m in my low range. When it cuts out, I have to try again, pushing more air through. When I push more air through, I think the cords maybe vibrate more efficiently and faster, causing less movement around the cyst. When the cords are relaxed, vibrating slower, they brush up against it and experience brief paralysis. My theory is that I need surgery to get this cyst removed so that I can recover.
Singing doesn’t bring me life like it used to, and it hasn't in quite some time… it hurts, and it’s unpredictable, even when I think I do things right. Talking is even more painful. It cuts out in conversation with strangers, during meetings, or at home with my wife when we are trying to catch up on our day. I just want to be silent. But that’s what’s difficult. I talk and sing for my living. Honestly, I’ve been hoping I can have the surgery to remove the cyst so that I’ll be put on vocal rest for a few weeks, maybe longer. My heart is longing for a break.
I’m going to see another ENT next week in Oakland. I’m not leaving that room until I have answers. I’m not leaving until he sees, definitively, whether or not my cords are hitting that cyst. And whether they're hitting or not, I want him to give me every reason why he wouldn’t operate to remove it. Either way, I’ve done my research, and cysts can cause vocal dysphonia and paralysis even in cases where the cyst is not directly on the patients’ vocal cord/s.
If he just says, “Kevin, you have a vocal disorder and you’re just going to have to deal with it….”, I don't know what I'll do? I’m losing hope. Am I going to have to quit music? I’m not sure I can continue singing and making music if I can’t figure this out. I don’t know if I have the strength to push through this anymore. At this point I might consider starting another career. But that’s the thing; I don’t really have skills outside of music and communication.
I recently stepped out into another job change. I’m starting a recording studio that will hopefully serve as a really cool hub for building community and providing resources and encouragement to artists in San Francisco. I’m also serving as one of the music ministers at a smaller church in town and teaching some guitar lessons again. Other than the fact that I have to talk and sing a lot, I feel I'm taking a step towards long term goals.
But my insurance runs out at the end of the year unless I can come up with the extra cash to cover our premiums through COBRA. Our current insurance is great and allows me to see a specialist for next to nothing. I’m not sure what I’ll do if I lose that coverage. This isn’t a plea for money. I’m just trying to tell you what I’m up against, and why there is seemingly no movement in the creative part of my life.
It hurts too much to create.
It sucks when I think about how I’m falling behind, unable to release my best work right now. I have an entire record written and partially recorded. I even have the studio time covered through the investment of a dear friend. But how can I put out a record if it hurts so badly to communicate?
So there it is. I’ll attach a picture so you can see the cyst. If you’ve read this far you deserve to see it. Feel free to comment. Even if its advice or some kind of connection to someone who can help. Maybe I’ll try it, maybe you're struggling too. Just hearing your voice will help me feel less alone in this.
Here’s the pic. See the “V” looking shape. Those are the vocal cords The lower range happens towards the bottom and the higher range happens towards the top. Look towards the bottom of the cords, to the right. There’s the cyst, underneath my left vocal chord. That shouldn’t be there. Cysts, polyps, or lesions can form from yelling or screaming (like if you suddenly hurt yourself), from continual vocal abuse, from exposure to stomach acid, or for other reasons unknown to me. People just get cysts sometimes.
So that’s it. Next week, hopefully I can get some definitive answers. I appreciate your prayers, thoughts, comments, and everything. It’s difficult for me not to feel like I’m wearing out my welcome with the people who are closest to me. I sometimes fear that they’ll just write me off for being too high maintenance. They’ve been there through thick and thin, and I’m forever grateful for that. Jocelyn, you are my rock. I love you. If you had no idea about any of this, it’s time I shared it with you. I’ll update you soon.