The Need for Testing by Susan Reagan

       For five long years I was under the impression that I had Spasmodic Dysphonia (SD).  During that time period I learned all there was to know about the disorder; theories regarding the onset, treatment options, surgical options, speech therapy and found out firsthand about the deep psychological damage that profound voice loss can do to the strongest, most confident and educated individual.  The mind twisting effects of voice loss can only truly be understood when you are the one experiencing the loss.  There is not enough empathy from even the kindest person to comprehend what it is like to be voiceless in a speaking world. 

          I surrounded myself with the SD community, joined the National Spasmodic Dysphonia Association and even became a support group leader.  I saw no less than five otolaryngologist, three speech and language pathologists, a neurologist and an endocrinologist.  I received enough Botulinum toxin (Botox) injected into my larynx to freeze countless middle aged faces.  I spent a combined total of several months in the “breathy period” not being able to voice beyond a faint whisper in my ongoing desperate quest to regain some shred of my voice with the use of Botox.  

          With each failed attempt the depression, the anger, fear, panic, despair worsened.  There were hours, days, weeks, months and eventually years of spiraling into a deep situational depression.  By this point I was feeling utterly trapped by my inability to produce voice, I was panicked about how I would live the rest of my life without the ability to speak.  How would I secure meaningful employment that provided a compensatory wage that was equal to my education and professional experience?  How would I make the world aware that I was locked inside screaming to get out?

          At present time there is no definitive diagnostic testing used to determine if SD is indeed the correct diagnosis.  I am not versed in the current research being performed; I can only tell you what it was like to live with the wrong diagnosis for almost 5 years.  There were times during this period that suicide was a serious consideration.   Being a normally sane person and knowing the difference between wanting to be dead and actually devising an exit strategy I struggled to not have thoughts of ending my life.   Thinking of ending my life caused greater mental pain than actually living with my present vocal condition.   One day I made the choice to stop being depressed; I fought to shower and groom myself daily, fought to exercise and fought to live.   

            I am grateful to all of the practitioners that were a part of my journey, as with each encounter I learned more and more about me, my voice and my strength in this never ending search to become whole once again.  If I had ended this search or accepted a fate of being near mute, I would have found a way to survive but would have always been nagged by the, “what ifs”. 

       If there was a definitive diagnostic test to determine if SD is present I would have never had to psychologically suffer so greatly and for such a long time.  If a test existed a true diagnosis could have determined years prior and I could have received the correct treatments.  Several benefits would be created by having a definitive diagnostic test; cost savings for insurance companies, out of pocket savings for the patient and a reduction in the pain and suffering to the patient. 

          This account is written for those that do not have to ability to express themselves as I do, for those that have given up and for those that do not have the will to fight.  I was lucky enough to have the means and the will to keep seeking out answers, to keep asking why I could not speak when others had wild success with the widely accepted treatment, why did I have so much pain in my throat, neck and shoulders when others did not report similar experiences.    If a definitive diagnostic test existed life could have been so much different for me and for so many others.