When my spasmodic dysphonia first appeared

December 3, 2013

It’s been a long time (again) since I wrote in this blog. Time to start up again. In a previous post (years ago now), I started to write about how my spasmodic dysphonia first developed. It’s time to continue writing that story. Read the rest of this entry »

Surgeon: Surgery isn’t for every SD patient

May 7, 2012

(One in a series of posts following the Western Regional Symposium of the National Spasmodic Dysphonia Association, April 28, 2012, Phoenix)

The NSDA put together quite a line-up of speakers at the April symposium. The first speaker we heard from was Dr. Gerald Berke, Chairman of the UCLA Department of Head and Neck Surgery in Los Angeles. He developed the surgical treatment for SD, Selective Laryngeal Adductor Denervation-Renervation. Dr. Berke is a member of NSDA’s Scientific Advisory Board.

Here’s a summary of Dr. Berke’s talk:

  • He has performed over 300 Denervation-Renervation surgeries. He sees lots of variation in the way the nerves work in all of these patients, which leads him to believe that SD may not be one disease — it may be several.
  • It’s estimated there are 40,000 people with SD in the U.S. However, Dr. Berke believes that number may actually be double. People with SD in the U.S come from all walks of life.
  • Botox shots are still the mainstay therapy for adductor SD. However, many patients don’t respond to Botox treatments. Botox used to be weaker in strength than it is now. Originally, people who got some of the first Botox shots for SD were given 15 units, which is now considered to be a huge dose.
  • A lot of patients can benefit from speech therapy. However, the speech therapy concepts taught to people with SD require conscious thought to use. You often don’t have time to think before you speak, so these techniques don’t work all the time. (Personal note from Fred: I found that speech therapy helped me maximize my post-Botox voice. A speech therapist gave me useful techniques.)
  • Dr. Berke finds the Point-Touch technique of administering Botox injections works just as well as with the EMG monitor. He says a scientific paper has just been published that shows it’s just as effective.
  • For Abductor SD, Botox is administered in the PCA muscle. As most AB SD patients know, this is a much more difficult injection than the one for AD SD.
  • How much Botox to inject: The average dose is one unit. A small dose is 1/8 (0.125) to 1/16 (0.0625) units. For one patient who was particularly sensitive to Botox, Dr. Berke administered a dosage of 1/600th of a unit.
  • How often do patients get Botox injections? For some it’s as frequent as every six weeks. For others the injections can be six to nine months apart. The amount of time the Botox lasts is usually shorter for men than women.
  • If a person with SD develops antibodies for Botox and it no longer works, the doctor can switch from the commonly used Botox A to the less commonly used Botox B. This is a very rare occurrence.
  • The Denervation-Renervation surgery involves cutting the nerve and then grafting another one in its place. If you get good results with Botox, Dr. Berke says you should not get this surgery. The Denervation-Renervation can be unilateral or bilateral. Unilateral doesn’t work for 50-60% of people. People who have a tremor in addition to SD don’t always improve with the Denervation-Renervation surgery.

In future posts, I’ll write about news involving genetics and research that was presented at the NSDA 2012 Western Regional Symposium.

Botox: How much?

May 7, 2012

(One in a series of posts following the Western Regional Symposium of the National Spasmodic Dysphonia Association, April 28, 2012, Phoenix)

One of the great things whenever you get in a group of people who have SD is that you get to compare notes. When were you first diagnosed? Was there a misdiagnosis first? Do you get Botox? What is your dose? How often do you get the shots?

It’s those last three questions that I’m going to write about in this post.

When I first got Botox shots several years ago, the doctor started with 1.5 units on both sides of my vocal folds. It worked, but I choked whenever I drank liquids for weeks afterward. The dose was way too high for me.

Subsequent injections were 1.0 units, then 0.75 then 0.5. I no longer choked on liquids.

Even with 0.5, I was getting a whisper-like voice for four weeks after the Botox kicked in.

But my doctor thought we could do better. So we went down to 0.4, 0.33, and then to 0.25 which is where I am now. Result: My voice does not go down to a full whisper. It’s raspy for a couple of weeks, like I have a bad cold, and I can’t project in noisy environments like restaurants. But usually, I have a pretty full voice by my third week.

And that’s a result I can live with.

Which brings me to sharing this information at the NSDA conference in Phoenix.

I met one woman who has been getting Botox injections for years. Her doctor won’t go below 0.5. She has a whisper voice for weeks afterward.

Another woman I met has been getting Botox shots for a much shorter time. Her doctor was giving her 1.75 units on each side! I know each patient is different, but a dose lower than that caused me to choke on liquids. When she told her doctor that the soft voice period was lasting six weeks or longer, the doctor’s solution was to give her unilateral shots … but the doctor put 3.5 units in one side!

Which leads me to a question that I don’t have an answer for: Why do some doctors refuse to lower the Botox dosage? I’ve heard people with SD say that they felt like they were trading one vocal problem for another. Their SD was relieved by the Botox, but the dosage left them with a voice that could not be easily heard by people for six weeks or more!

I’ve heard some people say they stopped the Botox shots because they got tired of the roller coaster effect, that is, the peaks and valleys of having a good voice, then a weakening voice, followed by the whisper voice period immediately after the Botox.

I ask myself this question: Would more people continue with treatment if their doctor was able to give them smaller doses and reduce the soft voice period?

As always, if you have any thoughts on this subject, feel free to leave a comment below.

A quick note after the NSDA conference

April 30, 2012

I have a lot to write about after the NSDA conference this weekend. I will get to individual posts on the following in the coming days:

  • the great news about the amount of research being done now on spasmodic dysphonia
  • current theory on what triggers the onset of SD
  • what a surgeon has to say about who should and shouldn’t get surgery for SD
  • my thoughts on hearing people whose doctors are giving what seem to be overly large dosages of Botox
  • my thoughts on SD and brain plasticity.

Just got back tonight. Lots to write about … and even think about

Oh, and news about where the NSDA national conference will be next year, and when.

NSDA 2012 Western regional symposium announced

February 16, 2012

I had been diagnosed with spasmodic dysphonia for a few years before I ever attended a National Spasmodic Dysphonia Association (NSDA) event.

I certainly knew there were other people with SD, but I hadn’t met any. Getting information on SD for me consisted of research on the internet.

But attending an NSDA regional symposium made a huge difference for me. Not only was it good to hear from doctors treating patients and researchers searching for a cure — it was also good to speak with so many others with SD.

Reading about what to expect from the condition and treatments is, without a doubt, very helpful.

But being able to compare notes with others was a great experience.

How old were you when you were diagnosed? Did you have a misdiagnosis first? Was it muscle tension dysphonia? GERD? Did they send you to see a speech therapist? How often do you get Botox shots? Do you get them on both sides or unilateral? Etc.

So it’s great news IMHO that the NSDA has announced its first regional symposium of 2012. Here is some of the information directly from NSDA’s website:

Save the date for the 2012 NSDA Western Regional Symposium Phoenix, AZ, on April 28, 2012. We will delve into the latest research on spasmodic dysphonia along with discussing practical ways to live with the disorder. Expect plenty of time for questions and answers along with interaction between the medical faculty and people with SD.

For more information on the Phoenix symposium, click here.

Of course, for various reasons, it’s not possible for all people with SD to attend a symposium. But interaction with others with SD is still possible closer to home.

SD support groups are available in many parts of the country. The NSDA has a list of groups on its website (click here).

I’ll be in Phoenix in late April. Maybe I’ll see you there!

Appointment for re-injection

February 16, 2012

I noted in a recent post that my most recent Botox shots for spasmodic dysphonia wore out very quickly. I thought I’d wait a bit before making an appointment to get injections again.

But after one day at work when my voice wasn’t as good as I’d like it to be, I called my doctor’s office and made an appointment for this Monday, Feb. 20.

I spoke to my doctor on the phone. He said the previous shots might not have been optimally placed or the dilution of the Botox may have been off.

If all goes as it usually does, this time next week I’ll start to have some soft or raspy voice effects. That will be a good thing because it will mean the shots are working.

I’ll post an update on this around the middle of next week.

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.

No need to hide

January 9, 2012

Yesterday, we had our quarterly meeting of the Chester-Montgomery Counties, PA, spasmodic dysphonia support group. Something that happened at the meeting has prompted me to write this post.

We had a handful of new attendees at the meeting. The topic of workplace discrimination and whether SD is considered a disability came up. Read the rest of this entry »

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.