My Story

rob photo spasmodic dysphonia

I’m an average Joe from Northeast Ohio, avid Cleveland sports fan (as tough as it can be)…traveler, and working in the real estate/finance industry.

All my life, I’ve had a normal voice and never gave it a second thought. Then, gradually, I noticed my voice slowly deteriorating over several months. At first, I thought it was just a lingering cold or sinus problem. It took me awhile to actually realize something more serious might be wrong. I would guess the problem started sometime around August or September of 2011. I can’t pinpoint it because it was very gradual.

The frequency and severity of the problem increased over the next 2 months. I took a trip with some friends in November 2011 and recall having to repeat myself several times during the 3-hour car ride, because my voice was not projecting loud enough to overcome the highway noises. (at this point, there was still no “choppiness” or “halting” sound to my voice, it was just weaker).

I decided to make an appointment to visit my family doctor for advice.  He prescribed Allegra D, thinking it may be allergies but he didn’t sound confident that this was the problem.  After a week of taking the Allegra D, I went back for a follow-up appointment and there was no change in my voice.  He recommended that I go to an Ear, Nose and Throat (ENT) specialist where they could look down my throat to identify potential problems.

Hearing this, I immediately thought, “no way do I want something down my throat!”  But I needed to find out what the problem was, so I had no choice. So the appointment was made for early December 2011; during my first visit, I thought I was just going to be set up for an “appointment” to get my throat checked.  To my surprise, the nurse told me the doctor would want to look down my throat TODAY!  I was not prepared for that – but thought, “well, let’s get this over with.”  So she shot some numbing spray into my nostrils, down into my throat went the numbing solution and I sat and waited…

The ENT doctor came into the room about 5 minutes later and pulled out his handy scope.  He inserted it into my right nostril, down my throat and had me make various sounds like “heeee” and “ahhh” and he had me cough and clear my throat.  He was checking to see how my vocal cords reacted, and whether there were any visible problems.  The only thing he noticed was a slight redness, which he said could be from acid reflux coming back up my esophagus.

He prescribed Protonix to see if that solved the problem.  I knew in the back of my mind that this was not the problem, since I have never had any symptoms of heartburn or acid reflux in my life.  I’ve never taken antacids.  But I went along with it, as I wanted to play by the book. 

Several weeks later, around Christmas time, my voice worsened a little bit.  My family noticed, my co-workers were noticing, and it was becoming harder and harder to keep it hidden.  I recall a phone conversation with a vendor at work, where the vendor asked me whether I had a cold.  I just told him, “yes” because I didn’t want to go into the specifics of what I was experiencing.

A New Year’s trip to Myrtle Beach was met with trepidation:  there was an 11-hour car ride to Myrtle Beach, along with the 11-hour car ride back.  My wife and I were going with 2 friends and I wondered:  how is that car ride going to go?  Am I going to be able to speak loudly enough to have a conversation? 

And what about the actual week in Myrtle Beach?  How would my voice react throughout the week?  These questions left me with a lot of anxiety at a time when I should have been relaxed and enjoying my vacation.

I decided that I needed a follow-up visit to my ENT doctor sooner rather than later.  The originally-scheduled appointment was in late January, and I was not happy with the results of the Protonix (acid reflux medication) so I called the ENT doctor to request a faster appointment.  Ironically, I got the answering machine at the ENT’s office, at a time when my voice was particularly bad and I had to leave a message requesting a new appointment with a very shaky voice.

“Good,” I thought, “Maybe they will hear my voice and get me in sooner.”  As it turned out, they did call back and set the appointment for January 3, 2012.  This was just after I returned from Myrtle Beach so it was perfect for me.  (By the way, my 11 hours to and from? It went “ok” – for much of the time, the others were asleep or listening to ipods/playing on their phones so I didn’t actually have to “converse” as long as I thought).  

I entered the newly-scheduled appointment on January 3, 2012 with still a huge unknown – what’s going on with my voice?  I was somewhat comforted that there didn’t seem to be anything structurally wrong with my vocal cords, no flaws or abnormal masses.  I tried to do some internet research and found only “maybes” about what it could be. 

Again, the ENT doctor put a scope down my throat to see if he could figure it out.  He mentioned that the slight redness was gone, so the acid reflux medication did its job.  But my voice was still deteriorating, it was worse than the previous visit.  After going through the same “heeees” and “ahhhhs” as before, my doctor suggested that I likely have “spastic dysphonia”.  I must’ve had a perplexed look on my face, because he wrote it down for me.

Ok, so now I have a diagnosis.  When I looked up “spastic dysphonia” on the internet, I found that the term is synonymous with the term “spasmodic dysphonia”.  The 2 terms mean the same thing.  I believe “spastic dysphonia” is just the older term, “spasmodic dysphonia” is the more modern term for it.

Once I had that knowledge, I found many things on the internet about my condition.  Really, there’s a LOT of helpful information out there.  I found that there’s an organization called NSDA, (National Spasmodic Dysphonia Association), I found that it’s generally believed to be a neurological disorder between the brain and the voice box.  And I found out that there is generally no cause, but there are treatments available. 

The treatments are generally one of three choices:  voice therapy, botox injections into the throat muscles, and surgery on the throat muscles.

Once I saw the second and third options, I knew I first wanted to try the voice therapy and if THAT didn’t work move on to the Botox, and leave the surgery as the last-resort option. 

So I decided to start this blog.  Hopefully others will find this helpful, therapeutic, inspirational, and any other words you want to add.  Really, I would love to beat this thing, and show others that it can be done.  I’m an average ordinary guy and if I can recover, hopefully it will give hope to others.  If I can’t recover my voice, I’m sure this will be therapeutic for me and I’ll be glad I did it so it’s a win-win.

One note about my job:  My job as a supervisor in a real estate company requires me to constantly communicate with my team, with vendors, and with my clients.  Communication is in the form of email, phone, and face-to-face time.  I decided to be up front with my co-workers.  I told my boss what was going on, and he was understanding and sympathetic.  My team, the people I supervise, have been wonderful – they don’t even mention it, they are just rolling with it, so to speak.   I try to keep them updated as much as possible just because I feel the better they are informed, the less I will seem like some sort of “freak”.  I don’t know of another way to cope with it so that’s my plan. 

As I progress through my journey, I will update this blog with new posts and I welcome any feedback, comments, or words of wisdom.  If you’re new to this blog, you might want to go back to the beginning and start with my first blog post and catch up chronologically, it’ll probably make more sense. Thank you for stopping by!

Rob

 

***Update as of February 21, 2012*** I have been diagnosed by a specialist as having Muscle Tension Dysphonia (MTD), this specialist does not believe that I have Spasmodic Dysphonia (SD). Although he says a person could have both, he is of the opinion that I only have MTD. I will continue with this blog since I feel it can be helpful to anybody that has either condition.

***Update on March 20, 2012*** After my visit today at the Cleveland Clinic, it was determined that I do, in fact, have spasmodic dysphonia after all. I did make some progress after one session, which led my doctor to believe I had MTD, but the progress was short-lived and I could not sustain the results. Stay updated on my progress through my regular blog posts, I do NOT have muscle tension dysphonia after all.

***Update on August 30, 2014*** I realized that my job description above has changed. I am no longer a supervisor, you’ll find a blog post about it in the July 2013 category. I am still in the real estate industry, just not as a supervisor any more. But I enjoy my job and once again, am fortunate to have sympathetic co-workers and my voice has not been an issue.