What I’m Doing Now/ Treatments

After botox did not work for me, I pretty much continued with my normal life, although as the days passed by I was becoming more and more quiet. At gatherings, table conversations. I stopped going to my Victory Church Fellowship small group because it was frustrating not to be able to converse well. I was fortunate to work with very professional and medically literate people and I was given non-speaking work in the office. By end of the year (2010), I had decided to take a long break from work. Jan 2011 to July 2011. No salary , of course. But I’m very grateful for the chance the company has given me to focus on my  healing.

My Whiteboard, being played by my roommate Chin

Because of the swelling and the trauma caused to my vocal cords, I had to take a couple of weeks voice rest. Believe it or not, I really stuck to it. I used whiteboard, magic slate, notebook and pen. I learned American Sign Language (ASL). I am determined to do whatever is needed to have my voice back.

My Magic Slate, artwork made by David

A Thinner Whiteboard, the one with the yellow sun.

Using it to talk with bday boy Pat.

I also bought Connie Pike’s book Free To Speak: Overcoming Spasmodic Dysphonia, Mike White’s Breathing Kit, and Roger Love’s book Set Your Voice Free (with CD). While on voice rest, I had been doing Mike White’s breathing exercises.

Purple Notebook & Pen, with bf Mark

My Sign Language Instructor Allan (pls come back to the Phils!)

Now on my 3^rd month of healing, I can feel that I can already start with voice rehab. I’ve begun to slowly incorporate Connie Pike’s humming and other exercises, the kazoo exercise, and Roger Love’s CD. It has just been over a week since I started on April 20, 2011. So far, I saw improvement on my singing voice. But none on my speaking voice.

I hope and fervently pray that my speaking voice will improve by mid July 2011 - when I need to get back to work.

Treatment Options for Spasmodic Dysphonia

I’m a Senior Research Associate in a Hong-kong based executive search firm. I’m based in Manila, Philippines. So it’s no surprise that when I was diagnosed with sulcus vocalis, then later on changed to spasmodic dysphonia, I did all the research I could. What it is, symptoms, causes, what else can aggravate it, treatments – both conventional medicine and alternative, success rates of the different treatments, doctors who specialize on spasmodic dysphonia (SD).

In my first post, I have mentioned details of my consultation with leading doctors in our country. I had undergone various medical tests (from laryngoscopy to MRI. Yes, I had MRI to rule out neurological brain damage).

MRI – Magnetic Resonance Imaging

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 My doctors recommended botox injections to the vocal cords. I’ve researched about SD cases and learned that botox is the most medically acceptable treatment for SD. I wasn’t too excited about having botox so I asked my doctor if we could try having voice therapy first. He agreed and referred me to the Voice Rehab Dept. of Makati Medical Center. 

I did about 4 sessions of voice therapy which were mostly Press Exercises (Push your hands against the side of the chair then make a sound), Head Manipulation then making a sound (chin on the chest then make a sound, chin on the right shoulder then make a sound). My speech pathologist was still young. I would say with about a year or 2 of experience. In our first meeting she admitted that I was her first case of SD and she said she’ll research on it. We exchanged email addresses and I sent her my research about SD. She’s very kind and supportive. But well-meaning as she was, I needed someone with more experience so I respectfully requested a referral from my doctor.

Regular Voice Therapy

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Professor Bal Ligot’s name kept coming up in my conversations with different doctors. He is a professor in the University of the Philippines Medical College and is the pioneer in voice therapy in the Philippines. I made a schedule with him and he quickly earned my respect. His knowledge on voice and its mechanisms is extensive. He is insistent on recording my voice before and after sessions, which is a wonderful tool in feedback. I have had about 5 sessions with him when I couldn’t stand the prospect of getting healed slowly. So during the Christmas break, I decided that I would take a botox shot first quarter the next year. During that time, I’ve also come across Connie Pike, a speech pathologist in the US who has had spasmodic dysphonia herself and has overcome it by a specially designed voice therapy. I had consultation with her via Skype, she gave pointers. Still, her course was the slow and steady one. I needed something fast and effective because my voice disorder was affecting my career and my social life. I also battled with frustration bordering depression. And so I wanted to end the torment as quickly as possible.

February (or March) of 2010, I had my first botox shot. Done by the doctor who has been referred by 2 other ENTs as the specialist who has done the most number of botox injections (with success) in our country. I would want nothing less.

Botox Injection

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No need to give details of the injection. It just didn’t work for me. No effect whatsoever. It didn’t turn worse, it didn’t get better. Later on, I learned that spasmodic dysphonia ABductor type does not get as much successes from botox (compared with Adductor). In short, I got the rarer form of SD, and the less responsive to the only suggested form of treatment – botox. Of course there is still surgery which would cut some nerves, but that is the last resort. And no one, as far as I know, does the procedure in the Philippines.

Given no other option, I had to search for more treatments available. I’ll mention them in my next posts.

Coping with Voice Disorders

With permission, I am sharing an excerpt from a post on April 21, 2011 in a vocal disorder forum. The writer has requested it to be a bit anonymous for the reason that he is not looking for pity or anything like that. He was writing this to a group of fellow voice patients:

"Unfortunately, things are now worse than before the surgeries. The theory is that during the time when my cords were not medializing adequately, I developed a compensatory mechanism of engaging extra pharyngeal muscles. This is a big problem as now I can't get out a quality voice at all. My voice is just downright strange, I can't even stand to hear it.  

My day consists of stares, winces, double-takes, "are you sick remarks," and even outright rude inquiries/comments. I had a person actually say to me, "I can't hear a ##@$ thing you're saying..."Another situation recently involved me having a small conversation with a classmate then as we broke away, I turn around to her and another person laughing as they look back at me.  

Needless to say, the last few years of my life have been among the worst of my life. I get the feeling that people treat me differently, don't take me seriously, and mis-characterize me, based on how I sound. Humans are hardwired to treat people according to how they view that person. Unfortunately we seem to be hardwired to make that classification based on outward/superficial measures.  

At school there are many situations in which I get overlooked completely such as group assignments. If I mention a point to the group it goes unnoticed, or at best I get a quiet and scanning look from another group member before they look away, only to fully engage with another person fully. If I run into a person I know and initiate conversation, that person seems very uninterested, as if they are doing me a favor by listening. That is until someone else comes along and now I don't exist. That's when I slip away unnoticed.  

Another everyday example is at the grocery check out. I get a smile and greeting from the cashier, in which I return the smile and hello, only to see the other person's smile convert to a puzzled expression and momentary stare. In these moments I feel so judged, and inappropriately classified as odd. Or answering the phone only to have a 2 second pause on the other end followed by "hello?!," followed by another pause when I respond. At this point 10 seconds or more have progressed and this becomes the point where I hang up, feeling ripped down again. Happens very often, I avoid answering the phone most days unless I know the person.  I think I have gotten to a point where I actually speak less than 30 minutes a day. 

Even though I communicate well with my wife, and close family, I feel alone. That's what prompted me to look for groups that had other individuals in similar situations. I've tried keeping a journal, meeting with school counselors, but these things have done very little. I feel my situation is seen as insignificant or others don't have the ability to see things from my pov. It's easy to show empathy to a person that you can relate to. I haven't met another person that has my problem, I can only imagine this from another person's viewpoint. I don't think most view it as a situation that deserves sensitivity.   

Apologies for the lengthy narrative. I guess I wrote most of this out for myself after having another bad day out in the world that leaves me feeling "sub-everyone else." I am writing this as it comes to me so I am sorry if it isn't clear and wordy. I joined yesterday after a bad day, I decided to write this after another bad day out of hundreds.  Would love some advice on how others have dealt with similar feelings, experiences." 

Let us try not to be mean to other people. We don't know what they are going through. Sometimes what we think as weird may actually be a medical condition or a physical disability of that person. Treat others as you would like them to treat you.

Article Source: a forum from a voice group. If you have a vocal problem or have a family member/ friend who has, you can connect with us and be a member of http://www.voicematters.net/

What is Spasmodic Dysphonia? with Video and Voice Recording

Spasmodic Dysphonia is a voice disorder resulting from involuntary movements (or spasms) of the voice box muscles. These spasms interrupt normal voice (dysphonia) in "abrupt spurts" with a strained, strangled voice, with breathy, soundless voice, or with a mixture of both.

• Spasmodic: spasms or involuntary movements
• Dysphonia: abnormal voice

• SD is a type of dystonia, a disorder of the central nervous system that causes involuntary movement of the vocal folds during voice production.
• SD is not a psychiatric or psychological disease.
• Swallowing and breathing, the other important functions of the voice box, are almost never affected.

Three (3) Types of Spasmodic Dysphonia

Type	What Happens	How the Voice Sounds
Adductor SD (80% to 95% of cases)	Vocal folds come together (close) tightly at the wrong time during speech, making it difficult to produce voice	Strained, strangled breaks while speaking
Abductor SDM	Vocal folds move apart (open) at the wrong time during speech, causing air leaks	Breathy or soundless breaks while speaking
Mixed SD	Combination of abductor and adductor SD	Sometimes strained, strangled breaks; sometimes breathy or soundless breaks

Unknown Cause–but Treatment Can Improve Voice Problem.

For spasmodic dysphonia, like all dystonias: 

• the cause is unknown
• there is no specific test for diagnosis
• there is no known cure–but treatment can and does improve symptoms

What I have been diagnosed with is ABductor Spasmodic Dysphonia (ABSd), the rarer kind, wherein I sound breathy and whispery, NOT hoarse. It sounds more like when you’re shy to talk in front of a huge crowd.

I found a video by Dr. Robert Bastian which helped me. It describes SD, it’s different types, shows actual video of vocal cords while speaking plus it  has voice demonstrations of the different kinds of SD.

Dr. Bastian used the script Man’s First Boat – “Long ago, man found that it was easier to travel on water than on land.”

I have also attached a record of my voice clip reading Man’s First Boat. This clip was recorded 01/31/2011. I'll post my latest voice recording soon.

8 Things I Miss

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1.       Simple things I used to do such as ordering pizza delivery (via phone), being able to tell the cab driver where my destination is.

2.       Talking with friends over coffee.

3.       Joining a gym/dance club and introducing myself.

4.       Partying.

5.       Saying “thank you” without using sign language.

6.       Talking to strangers while waiting on the train.

7.       Calling a friend to talk about important and not-so-important things.

8.       A normal life.

I realized how much we take things for granted. Being able to walk, talk, taste, see.. Let’s not wait until we lose them to be grateful.

How I Lost my Voice

What I Lost

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“It started with a cough almost 2 years ago. I remember the date, because it was my 27th birthday..”

Pause. First, I’d like to make clear my two (2) reasons for writing this blog.

1. I am writing this for myself – to record my thoughts, treatments, what worked, what didn’t. Documentation is key.
2. I doubt if someone else will find this site but if you did and you have a vocal disorder of ANY kind, I hope you will find this blog both helpful and therapeutic.

Just Prior to the Onset of the Problem

Going back to my story, two years ago I celebrated my birthday in Baguio City, one of the coldest places in our country, the Philippines. I decided that I deserved a week-long break from 6 months of past-paced, stress-filled work. I was with an executive search firm and we just experienced change in management, lots of resignations plus new clients.

The Problem Begins

During August 2009 in that week-long vacation, I came down with the flu. It was bad, I was miserable the whole duration of the break. If it were not for my family and boyfriend being there, it would have been a horrendous experience. Well, looking back, I think I can say it is. Because it was the beginning of a little known disability – voice loss.

My 27th Bday - with my family and bf.
That's me standing beside my dad.

I went back to work feeling better. But my voice was hoarse, which is normal for someone with colds and cough. Then 2 weeks went by and the colds and cough remained. By that time it was already September. I went to the doctor who prescribed antibiotics for the cough. In a couple of days, the cough was gone. But my voice still did not return to normal. I thought it will eventually go back by itself. But it felt weird when I was speaking. It didn’t sound hoarse anymore or nasal (like during colds). It was more whispery. I still had voice, though. I just needed to force it out a bit more.

The Problem Didn’t Go Away

Life went on – Work. Stress. Church activities. Family. Daily workout. Friends.

By October, my friend and I decided to put up a small water station business. And so we went to work. I had to focus on it after my 9am to 6pm hours. During this time I was staying at the office until 8pm, sometimes 9pm.

Finding out What’s Wrong

By November, my voice was very weak and whispery. I went to the top hospitals and recommended specialists (ENT and gastroenterologists):

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1. Dr. Emmanuel Ibay of Makati Medical Center – diagnosed me with sulcus vocalis after doing Fiber optic Laryngoscopy, a procedure which involved putting a tube down my nose to see how the vocal cords function. This is a very good procedure to do to check how the vocal cords work. They ask you to produce sounds while the tube is inside.
2. Dr. Melchor Chan of University of Santo Tomas (UST) Hospital – who performed Endoscopy, which is swallowing a tube the size of an I.V. or dextrose tube. At the end it has a camera. The doc will be able to see if your esophageal sphincter, the opening of the stomach, opens and closes correctly. To check the possibility of acid reflux affecting the voice box. He said my sphincter was working well, for someone who had childhood achalasia.
3. Dr. Adonis Jurado of Children’s Medical Hospital/ Philippine Heart Center – He endorsed me to have Esophagram or Barium Test, which is swallowing a very thick paste-like substance. Then the radiologist will make a series of xrays on the substance’s movement. Test did not show any reflux of the substance.
4. Dra. Clarissa Fortuna of Medical City – performed Laryngoscopy again and said I have no vocal cord problems. (Later on, I discovered that some vocal disorders can sound normal at times, and dysfunctional at other times. At the time I was having my laryngoscopy with Dra. Fortuna, my vocal cords felt normal.)
5. Dra. Feliciano of St. Luke’s Hospital – diagnosed me with Spasmodic Dysphonia ABductor Type by listening to my voice and looking at my laryngoscopy DVD.
6. Dr. William Lim of Holy Infant – the doctor of Kris Aquino (or so I was told. Kris Aquino is a well-known TV host in the country). He diagnosed me with AB/SD (ABductor Spasmodic Dysphonia after performing another Laryngoscopy.
7. Speech Pathologist Connie Pike based in Florida, USA – reviewed my case and said she believes I have AB/SD.
8. A Neurologist (forgot her name) in Saint Louis University Hospital in Baguio City – endorsed me to have Magnetic Resonance Imaging MRI in Cardinal Santos Medical. She wanted to rule out any brain damage. Results turned out negative, but showed that I had acid reflux in the form of gas.

There were other doctors I had consulted but the above were the more prominent and significant. It was Dra. Feliciano who was the 1st to say it was Spasmodic Dysphonia. And she did it just by listening to me talk. Afterwards, she checked my video to confirm. But her initial diagnosis remained. She steered me in the right course, and I will always be grateful. Incidentally, I forgot her first name!!

I went through a lot to find out what was wrong with me. With the number of times I had tubes being inserted in my nose and mouth, I wish I could say that I have gotten used to them. But every time, it is as uncomfortable as the first one.

I already got weary writing these down. I didn't realize how many I've gone to. Hospitals and doctors. I haven’t even mentioned any of the prescription medicines I’ve been given! This is why I did not write about my vocal disorder in the past. But a respected mentor told me simply “blog about it.” WHAT??! But to be fair, he has no idea about how much this issue is a struggle for me. And how I HATE to write about frustrations. (I record triumphs, not hardships). But then again, I should thank him for suggesting it. I have to admit it IS therapeutic.