Spasmodic Dysphonia, Part 3

It’s been 4 weeks since the Botox injection and there has been a definite improvement in my voice quality.  It happened between the third and fourth week.  My voice is stronger, no spasms and has a smoother quality to it.  People have noticed.  I do not get asked to repeat myself . Background noise doesn’t have to keep me silent.  I am able to order food in a loud restaurant with no problem!  Speaking on the phone is much easier.   I still have hesitations about speaking, thinking that someone won’t understand me, or that the spasms will occur, but then I speak and it’s good, and I feel more confident about myself.  It’s hard to describe to someone who has never had issues with their voice how nice it is to just be able to speak and not worry about how it comes out.

Was this worth the time, energy, cost of treatment and waiting through the hoarseness and breathy voice for about 3 and a half weeks, yes, I definitely would say it was.  Will it improve even more over time, and will I have more volume (loudness)?  Only  time will tell.  How long will the improvement last?  That’s another question that will have to wait to be answered.

Spasmodic Dysphonia, Part 2

This week I had my 2 week checkup since the first Botox injection.  First the doctor questioned me about how my voice was doing.  I essentially have a very soft, breathy voice that sounds hoarse.  The spasms are gone, but there is no volume at all.  At a meeting of our HOA I could not even speak to the people sitting across the table from me.  Same deal at another meeting later in the week.  It’s really hard to talk on the phone and I need to take more breaths while trying to speak.

The doctor threaded a very small light and camera on a long thin tube through my nose and down into my throat.  Then he had me read some paragraphs while he watched the movement of my vocal cords.  This was really uncomfortable, but I managed to do it.  He assured me that the Botox was working , and that my voice would come back in one to two more weeks.  He thought perhaps the injection dosage may have been too high and that next time should be lowered.  He encouraged me to hang in there and assured me that it will get better soon.  Finding the correct dosage is an iterative process that is different for everyone, the dosage he gave me was the “medium” one.  So, I need to wait two more weeks and see what happens.  Hoping to make some progress soon…

Spasmodic Dysphonia

I was recently diagnosed with spasmodic dysphonia (SD). It’s a neurological disorder that causes my voice to crack and sound  raspy and strained like I have laryngitis.  I’ve had this condition since high school when I remember dreading to make speeches in front of the class because I hated the sound of my voice.  Throughout college and my  career as an engineer I have been hampered by the inability to make a good  presentation or speak in front of a group.  Of course, this led to a loss of self esteem, poor performance reviews, etc.   It has taken me over 40 years  to discover that my problem has a name and that it can possibly be treated.   All this time I thought that my terrible voice was something I was born with and  caused by nervousness, or fear of public speaking and there was nothing that could be done about it.

The exact cause of SD is not known.  There is no cure, but treatments can improve the condition.  The recommended treatment is Botulinum toxin therapy (Botox).  The Botox is injected into the muscles of the vocal chords. The effects are temporary and last about 3 to 4 months depending on the patient.  Each patient reacts differently to the treatment and the dosage may need to be adjusted higher or lower depending on the reaction.  I received my first injection one week ago.  My doctor warned me that it would take 1 to 2 weeks for my voice to improve.  So far, I have experienced hoarseness, difficulty swallowing my medications and vitamins (especially those large fish oil lozenges) and a “breathy” soft voice.  I’m hoping that this will soon pass and the potential benefits of the Botox will kick in.  I’ll keep you all posted about what happens in the next few weeks.

If you know anyone that you think might suffer from this condition, please tell them that there may be a solution.  An internet search showed that an estimated 50,000 people here in the US have this condition, but they believe that this number is greatly underestimated because most people (like me) never thought that it was possible to get treatment.