Posts Tagged ‘spasmodic dysphonia’

A first for everything

February 7, 2012

I’m sure many people with spasmodic dysphonia would agree with this: Even after having the condition for several years, you can still have new experiences with the condition, especially when you’re receiving Botox shots.

I’ve considered myself very fortunate in that Botox treatments for my SD work very well. A large part of that is attributable to my doctor who administers the shots. I had two treatments that didn’t work to my best advantage from the first doctor who I saw for Botox shots (a post for another time). My current doctor’s shots work like magic.

Until this time. I got some result, but just seven weeks after my last shots my voice is more like it usually is four months afterward.

Let me say right off that I knew this would happen eventually. No doctor “hits the spot” 100% of the time.

The effects from the Botox shots usually kick in for me anywhere from 24 to 48 hours after receiving them. I develop a soft or raspy voice period. This time I went beyond 48 hours without noticing any change.

Then, after about three days, my voice got better, without any soft voice period. It was very good for about two weeks.

But then the breaks in my voice started to come back. I’m seven weeks out now from my last shots, and I’m thinking of going back at the three-month point. I’ve left a message for my doctor at his office asking for a phone consultation to decide what to do next. I don’t know if seven weeks is too early to get the shots again.

The doctor said he thought one side “didn’t sound right” in the monitor this time while he was giving me the shots.

I remember when I had the two failed treatments in a row previously from another doctor. I was worried that I had some sort of immunity to the Botox.

That turned out not to be the case. Now that I understand more about SD, I know that it’s possible to have a treatment that doesn’t work so well or at all.

Meeting other people with SD at NSDA events also helps with this. I’ve asked people who have been getting the shots even longer than I have, “What’s your percentage success rate?” It’s usually very high (90%+), but everyone has a story about when the Botox didn’t work.

I’ve also met people with SD for whom Botox shots don’t work at all. I’ve encouraged some to try a different doctor. It sure made a difference for me.

This time that I’m spending now with my less-than-perfect voice is a reminder of how fortunate I am that the Botox works well and that I have an excellent doctor with whom I’ve had a high success rate.

I can only imagine what it must be like for people with SD for whom Botox doesn’t work, especially when they find themselves in a room with others who get benefits from the treatment.

We’ve all asked, “Why me?” about losing our good voice. For those who don’t get benefit from Botox, there must be an additional question of, “Why doesn’t that work for me?”

Here’s the other thing this brings to mind for me: The need for SD research.

When I go into more involved explanations of my SD and Botox, I often explain it this way: Just like a decongestant treats a symptom of a cold but doesn’t cure the cold, the same can be said about the Botox. It treats a “symptom” of SD, but doesn’t cure it.

For more information on research for a cure for SD, click here.

I’d like for this blog to also become a forum for people with SD to share their experiences. To go along with the topic of this post: Have you ever had a failed Botox injection? Let us know about it, and how you dealt with it, in the comments below.

Professor with SD gets his voice back

January 26, 2012

Since both of my parents were high school teachers, one thing that I’ve often thought about is what it would be like for a teacher to develop spasmodic dysphonia and not be able to teach.

One college professor kept teaching after he lost his voice to SD. Like many others, it was some time until he was properly diagnosed and treated.

Charles Kiesel, a professor at Oakland City University, lost his voice for seven years.

After seeing a TV news report, he called the doctor who was featured, was properly diagnosed, and started to receive Botox shots.

For others with SD, these parts of his story will seem familiar:

  • Kiesel said losing his voice caused him to become withdrawn
  • People thought he was sick or even had cancer, and
  • Talking on the phone was particularly difficult.

You can read more about Kiesel’s story here in the Pricneton Daily Clarion.

Feel free to leave a comment about your experience being diagnosed with SD.

Pastor with SD never misses giving a Sunday sermon

January 5, 2012

Imagine all the types of jobs in which the onset of spasmodic dysphonia can have a career-altering effect. In my case, it was as a radio news anchor.

But you can also imagine the impact it could have on a teacher, a customer service representative,an actor, a waiter or waitress, someone who trains others at work, etc.

How about a member of the clergy? Imagine getting in front of dozens to perhaps hundreds of people in a house of worship and having your voice fail.

So the story I want to share with you today is particularly inspirational.

As told in the Yakima Herald, Pastor Paul Guay of Mabton, WA, has had a number of medical challenges, including being a multiple cancer survivor.

Amidst his other ailments, Guay was diagnosed with SD in 2004. He receives Botox injections.

The Herald reports:

During all those spells, he never missed delivering a Sunday sermon.

It’s stories like this one, and others about people like NPR talk show host Diane Rehm which can inspire others with SD to continue on with their careers.

Do you have a story about how you’ve persevered with your career despite SD? Let us know about it in the Comments below.

Upcoming support group meeting

January 4, 2012

Are you someone who has been diagnosed with spasmodic dysphonia and live in southeastern Pennsylvania? If so, this post has information about an upcoming meeting of a support group for people in SE PA with SD. (more…)

A fresh start

December 28, 2011

Hello again. After not writing in this blog for almost three years, it’s time to start again. Why did I stop, and why the new start? My next-to-last post in February 2009 was my first installment in my personal story and experiences with spasmodic dysphonia. I just re-read that post for the first time in more than two years.

In retrospect, I wasn’t prepared to continue writing My Story.

That post chronicled my professional career in radio journalism up until the time my voice started to degrade because of spasmodic dysphonia.

Actually sitting down and writing about what came next proved to be difficult. So I never did it.

But in the interim, several things have happened.

The most important is that I’ve become more involved with the National Spasmodic Dysphonia Association (NSDA).

First I went to one annual, national symposium.

Then, I started attending meetings for a new, local SD support group in the western suburbs of Philadelphia.

Add one more regional symposium, one more national meeting and volunteering to help staff an NSDA booth at a medical conference in Philadelphia.

Then, the leader of our local SD group, Cathie Leister, asked me to become a co-leader of the group.

Everything started to click.

Working with the NSDA made me happy. I was able to share my story with other SD patients.

Hey, wait a minute … what I was doing was really just an extension of what I’ve done my entire life at work: providing information to help people, whether it was a general audience in radio or a specialized business audience through publishing.

It became apparent what I needed to do: I had to get back to writing the blog and My Story.

Information is a powerful thing. For people suffering from a medical condition, the best information is often personal stories recounting others’ experiences.

So, I’m back.

Despite working in broadcast, print and online media for more than 26 years, restarting this blog is a bit scary.

I truly believe speaking openly about my SD gives me strength to deal with this vocal condition.

But even knowing that, it can be difficult to sit in front of the computer and write these posts.

I’m more accustomed to writing about other people. This time, I plan to write more about me.

The journalist in me will still pass along stories I find online about SD.

But I hope the personal posts will help some SD patients as they learn to cope with this condition that robs people of what’s considered to be their good speaking voice.

I’ll end this post with a quick personal SD update. I had my most recent Botox injection on Dec. 19, 2011. Over the last two years, we’re reduced the Botox dosage to try to reduce the soft voice period following the procedure.

This time, my voice smoothed out without much of an effect on loudness. Oh, I can tell the difference. But most people can’t.

I’m very fortunate to have a great doctor. It’s not just the Botox that produces results — it’s the doctor’s technique.

I’ll write more about that in a future post. That’s a promise. (more…)

Surgery for AdSD vs. experiences with Botox

January 5, 2009

Recently, I posted an entry on this blog about experiencing the decline of my voice about three months after a Botox treatment. Although I am generally satisfied with my Botox treatments, the period of up to a month with a soft, whisper-y voice after a treatment is sometimes difficult to deal with.

I received one response to my post:

I had surgery for SD in July 2008 and after 4 months my voice returned to nearly normal. It remains that way.

Surgeon: Dr. Gerald Berke, at UCLA.

Botox was too hit-or-miss for me.

Scott Adams

Scott Adams is the author of the comic strip Dilbert and has blogged about his experience with SD.

His response certainly caused me to think.

If my own continued experiences with Botox treatments had been like my first three, I’d probably be looking into the surgery.

After my first treatment, the breathy voice lasted for well over a month, and I experienced problems swallowing liquids.

My second treatment produced a weak result (instead of a weak voice). After six weeks, it was as if I hadn’t had a treatment at all.

Third treatment: No result at all. No change in voice. I was terrified that I was one of the few who develop an immunity to Botox.

Then I switched doctors.

What a difference. My first treatment from the new doctor worked just as it should have with no swallowing problems. I had a breathy voice for about a month, but the doctor said we’d cut the Botox dosage as low as possible to reduce the soft voice period.

Each of my subsequent treatments have been successful. I’m now down to a .36 dose. I still wish the post-treatment breathy results weren’t so pronounced — that’s my only complaint.

Is it enough of a negative to try the surgery instead? Right now, no. I suppose over time, my opinion may change. Yes, it’s sometimes frustrating during the soft voice period. People can’t really hear me in places such as crowded restaurants where there’s lots of background noise.

I went to the National Spasmodic Dysphonia Association’s Web site to find more information about the surgery. The NSDA says about 90% of patients are satisfied with the surgery. About 83% would recommend it for others with SD. That’s almost one in five who would not recommend it.

Those are pretty good stats. But what if I’m part of the 10% who are not satisfied? What if I’m left with a voice that’s just a whisper, as has been the result in some cases? And how will my employer feel about my being left with a soft voice for up to four months?

My personal conclusion (which, I admit, isn’t for everyone): For now I’ll stick with Botox and wait for more information about the long-term results of the surgery. I can change my mind at any time and for any reason — if the Botox becomes less effective or if more statistics about the long-term success of the surgery are produced.

My thanks to Scott Adams for his response. I’m sure for many SD patients the surgery is a viable option. The key for people with SD: Explore all your options with medical professionals and seek out the experiences of others with SD.

I suppose fear comes into this for me: Fear that I’d be part of the 10% for whom results aren’t so great.

Please post a Comment about your experience with Botox injections and/or surgery for SD. I believe sharing these experiences will prove helpful.

Study: Role of Neurotransmission and Functional CNS Networks in Spasmodic Dysphonia

December 28, 2008

The National Institute of Neurological Disorders and Stroke (NINDS) is recruiting participants for a study involving spasmodic dysphonia.

This study will examine how the brain controls speech in patients with spasmodic dysphonia, a voice disorder that involves involuntary spasms of muscles in the larynx (voice box), causing breaks in speech.

For more infomation on the study, click here.

Almost three months after a Botox treatment

December 22, 2008

I’ve been receiving Botox injections for adductor spasmodic dysphonia for a few years now. My last treatment was on Oct. 1.

So, as of today, it’s two months and twenty days since my last treatment.

Even after a few years of treatments, I’m still not entirely used to the cycle of soft voice, better voice, ideal voice, deteriorating voice leading to my next treatment.

Within the last week, I’ve noticed deterioration of my voice. Then, yesterday morning I answered the phone. My “hello” was awful. The rest of the conversation was pretty good. “Hello,” especially when picking up the phone, has been one of my toughest words.

I’ve been planning on having my next treatment in late February. I’d have it earlier in the month, but there’s an event in the middle of the month when I don’t want to be in soft voice mode.

I’ll make it through the holidays with a pretty good voice. That’s good news.

I’ve described the ups and downs of the quality of my voice as a bell curve. It’s low on the graph when I get the Botox, it steadily increases after I get it. There’s that brief period of absolute optimal voice (the top of the curve), and then there’s the decline.

So, I know I’m officially in the decline now. I’m my own worst critic about my voice. When it’s a week or so before my next Botox treatment and I tell people that, they often respond, “I don’t think your voice sounds so bad.” For a moment, I think they’re just being nice. But then I realize that it would probably take six months before my voice went entirely back to its pre-Botox condition.

The cycle continues. I miss the optimal voice already. I try not to get too down about the cyclical decline in my voice. But keeping my spirits up sometimes is difficult.

Happy holidays to all.

Welcome to my SD blog

December 9, 2008

Who am I? Why am I writing this blog? What’s the blog going to be all about? (more…)

Developing new methods to diagnose voice disorders

December 9, 2008

A doctor at the University of South Carolina has begun a five-year research project to develop a new method to diagnose vocal disorders, including spasmodic dysphonia.

It’s called Laryngeal High-Speed Videoendoscopy (HSV). Advanced Imaging Magazine has the story.