The First Few Moments (Part 2 of 2)

Part Two

|  If case you missed it…. Part 1

Vocal Disorder Diagnosis - Sit on curbIt was a miraculously beautiful late summer’s day in uptown Manhattan the day I found out I was wrongly diagnosed with Spasmodic Dysphonia.  Having been granted the opportunity to meet with one of the east coast’s foremost authorities on voice disorders he declared I was one of the lucky ones having Muscle Tension Dysphonia which is a treatable muscular disorder, I staggered blindly through the streets of the city unable to comprehend this new information.  This determination was made quickly with a short conversation and a simple but painful manipulation of my larynx.

Life out on the streets of the city seemed to be passing by at a speed that my mind was not able to grasp.  My hearing was altered and the ground seemed to have a spongy quality underneath my feet. There were times that evening when I was so completely dumfounded by the news that I did not have SD I literally sat on a curb and stared blindly at whatever it was that was in front of me.   There were even a few strangers that had stopped to ask if I was okay to which I responded, “You could never understand how happy I am”.   This news was like having been granted a stay of execution.  Several hours had passed by the time I realized the sun had set and I should get safely back to my hotel room.

I sat for an additional few hours in the hotel room trying to comprehend this bizarre turn of events.  At that time I did the only thing I could think to do, write poetry!  The doctor had manually manipulated my larynx back into its normally seated position which restored my voice.   I was filled with disbelief and hesitated to share this new information with the people in my world.  I was consumed with a foreboding feeling that somehow this turn of events was too good to be true.  This new information was to be protected and guarded until I was sure it was real.

I woke up several times that evening to try out my new voice and stared blankly out to the twinkling lights of the city.  I was in shock, disbelief and awe.  The first order of events once the sun had risen the next day was to make the requisite phone calls to the people that loved and supported me through this epic battle.  Of course Mom was first, I felt though somehow I wanted to warn her not to get too excited as there was a gnawing voice inside of me saying this is not going to last and it was too good to be true.  Sadly, six days later my larynx had climbed back up into the learned posture and my voice had broken once again.

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Susan Reagan is a contributing writer for VocalDisorders.org

Comments

  1. Caryn Rose says:

    I can relate to this after being diagnosed with ABSD and treated at Mayo Clinic 4 years ago, then told I really had ADSD by a very prominent doctor in my area. Botox hindered more than helped me so i discontinued all treatment 2 years ago. Recently went to a ADSD workshop and was told by the speech pathologist that I do not have SD at all, but *just* a tremor. I was totally shocked and still not sure what to do with that information. Since the speech pathologist lives many states away, I need to seek out the expert she recommended who is an hour away. This is a hassle for me because I work full-time. Step by step learning more about frustrating voice disorders.

    • susan reagan says:

      Find some one that will perhaps work with you via Skype or on weekends. But pursue it, there is help.

  2. Scatty Shirley says:

    as I read the first part I had that nagging feeling that muscles learn positions and it will take a long time for them to relearn where they should be.

    Maybe there is someone more local who could do the same manipulation for you until that larynx learns where it should be and stays there/

    wishing you luck and sendng many hugs.
    MY Gp has done nothing to help me with my voice even when she said is has psychological factors still no referral to a specialist so I gave up and just get through each day I can.
    I do volunteer at my local hospice ( I was apatient for 5 years and they were kind enough to let me in as a volunteer which freed a much needed space on Day Therapy.
    and after couple of hours with my group doing craft work and generally ‘chatting’ I can get a tiny low voice but it does not last.
    It is hard being there as I see people deterioratiing BUT also some who get discharged 🙂
    Just proves that relaxation helps,

  3. Divya says:

    Hi Susan,

    I was diagnosed with SD 3 months ago.I have a strained voice. I did a laryngoscopy test after which the ENT doc said it was spasmodic dysphonia,although i think its muscle tension dysphonia because my voice sounds ok sometimes..When i asked my SLP he said both are the same :(.How to determine whether i have SD or MTD, who can diagnose it rightly.

    • Susan Reagan says:

      first off , I an not a doctor but only speak from my own personal experience. with that said.

      go with your gut instinct. You know your body better than anyone else in the world. I had grave doubts about my SD diagnosis and kept pursuing a cure or a treatment that was viable. I too had limited success with botox there fore kept looking for answers. SD and MTD are not the same they may sound the same from a voice stand point but their etiology and pathology are different. I too had period of good voice, they were short bursts but good voice all the same. Sadly at this time there are no conclusive diagnostic testing for SD or MTD for that matter. Have you tried speech therapy> I did several times but it was only after ten months of extensive speech treatment did my voice start to recover. I hope this helps. We can continue this dialog as you like I am here to help and guide.