My Phantom Voice

I recently had my third set of Botox injections, to help me cope with this voice disorder. Not much has changed except my attitude toward having the Botox. With a slight increase in the past few dosages, I find relief in communicating, just as it's probably a relief for those who hear me. 

The other day my mother-in-law, who has been a double amputee for a number of years, told us that her ankle had been hurting. Familiar with the phantom limb syndrome, I realized that I often wake up with, what I consider, a phantom voice. Not knowing if I'll be able to speak clearly without my voice spasming, I have the sensation that my voice is as clear as what it had been. Perhaps it's the hope that my voice will function properly again, though doctors have told me otherwise. 

As I work with children, I continue to be amazed at their resiliency.  They can have such capacity to overcome hurdles and compensate for shortcomings. When my voice is clear, the children respond as if it's always like this, easy to understand. When it's not, we laugh at 'my silly voice' yet they don't give up listening. It's the hope for the resiliency of our youth that we need to hold on to, for life is change. My current dilemma is whether I should speak as much as I can when the Botox gives me a clear voice, or use my voice sparingly to stretch out the time that it's in my system. A permanent change might not be on the horizon, but temporary relief is a blessing.

Today my daughter, some other parents and I made a Chanukah presentation to my granddaughter's kindergarden class. Each of us had a station and 4 groups of children rotated from one station activity to another, in the classroom. I was excited to share my activity, but then, not surprisingly, the first question as each small group came to my table was "what happened to your voice?" I know that children will speak their mind, especially about what they directly observe,without filters. I expect that and welcome the teachable moment. It surprised me though, when one little boy asked "why did your voice die?" I said that it didn't die, it just changed. With that perspective of change and not permanence,I remain hopeful that the next Botox shots will have a longer effect on my voice. My voice is not gone, just different. I now have a new goal. I miss not reading aloud to children, due to this voice disorder. When my voice is at a good stage, I want to go back to that class and read them a story, a story about people with physical disabilities and differences...just trying to make a positive from a negative.

My Thanksgiving

Well, it's been nearly two weeks since my first Botox injection. Every morning I wake up hoping that my voice disorder hasn't returned, yet. The fact is that I'm taking a remedy, which I know is different from a cure. Even though I was told to make an appointment for a follow-up visit, another round of injections in three months, I now have hope that maybe I can control my spasmodic dysphonia. I have renewed concentration in vocal exercises,which I learned from past therapists/practitioners/readings. Feedback from others(family, colleagues, children and parents at school) is positive and encouraging. I can totally empathize with those who have an illness or condition that appears and the frustration and hopelessness that can follow. I am also thankful for the strength to be accepting and keep going.

Now for Botox....

Well, after struggling with spasmodic dysphonia for 3 ½ years, I have no more alternative remedies to try ….. and I’m tired of this. So, I decided to take my (primary)doctor’s suggestion and go back to the UCLA ENT for Botox injections. I’ve been reluctant for a number of reasons, but at this point, I’m ready to try medical intervention.

Yesterday I had my first Botox injection. Rather, my first two injections, one on each side of my larynx. The two marks looked fitting for upcoming Halloween … like a vampire bite, but they’ve already faded. The doctor was very thorough, telling me of possible side effects. It will take some time to see if the dosage is right since he considered my voice disorder to be fairly severe on the scale of voice disorders.

So, I’m hopeful, as is my family. My throat/voice feels no different, but then it never did. It’s not until I try and speak that the condition becomes apparent.

As I’ve tried to teach my children, there’s always a lesson to be learned. This challenge has reinforced something that I’ve often shared with teachers, the importance of speaking directly to others (esp. children). Forget shouting room to room or across a room, the communication loses its value. Speaking face to face, within a short distance, is the most effective way to verbally communicate. Then, of course, a lesson that my husband is probably very happy that I’ve come to better understand….. no point in saying inconsequential things, save the talk for what’s important and at the right time, when there’s not competition from other sources (such as a basketball or baseball game that’s on television). 

I’ll keep you posted….

5. Allergy Testing

The latest specialist that I've seen was an allergist. For the first time since I was a child,  I  went through two series of allergy skin tests. The results were not surprising..... I showed high sensitivity to certain trees, weeds, grasses and, of course, pollen. The doctor was sympathetic to my situation, said that spasmodic dysphonia might be related to my allergies, especially since I occasionally have laryngitis/throat reactions from allergies, but nothing conclusive.   My options for treatment could include going on an extended cruise, and be away from allergens(not realistic!), taking medication (which I've done) or going through immunotherapy. I spoke with my doctor, g.p., who made a valid point. If everyone was to be tested, we would probably all have some sort of environmental allergies. At this time in my life, do I really want to go through the series of allergy shots, when I've been dealing with this my whole life, and coping with it. I really would rather focus my attention  on my voice disorder..... So, now my regimen is yoga, specific stretches and exercises, trying to be conscious of how I use my voice, being hydrated and avoiding situations where I could strain my voice(which is most any social situation)...... I'm now starting to consider biofeedback, as well as giving Botox "a shot".

4. Alternative therapies

Oh, how I wanted a pill that would cure me of this ever-present voice disorder. The hope for a medicine cure probably comes from both the abundance of pharmacists/ pharmaceutical company employees in our family and the hope for an easy fix. Conversely, I was skeptical of medication such as Botox for a few reasons. It’s a toxin, one that is a temporary remedy and needs to be repeated every few months (if it works) to help relieve the laryngeal spasms. I’ve read about people who’ve had some disastrous side effects, as the Botox injections might effect other muscles in the throat area. 

Adding to my skepticism was my experience with hormone replacement therapy. I went through menopause early, at age 45, and began taking hormone replacement therapy at that time to prolong the effects that menopause would eventually have.  Eight years later, the medical study came out which told of the possible effects of HRT on women’s physical health (specifically the heart, and cancer). I stopped taking HRT, and just coped with menopause in my early 50’s. When Botox was suggested by doctors, I couldn’t help but wonder if there will be a study telling us of the long-term effects of Botox. Since this is not a life-threatening condition, I decided to explore alternative therapies first. Thanks to the suggestions of family and friends, I began my various attempts with alternative practitioners.

Functional Kinesiologist

I sincerely believe in the interconnectedness of our mind and body and want to find someone who can approach voice disorders in a holistic perspective. Thus, the recommendation of a functional kinesiologist was a hopeful lead.  This practitioner had never worked with someone with spasmodic dysphonia, but was willing to try to help me. These visits incorporated some cranial adjustments, muscle testing and even some massage therapy. I began taking the prescribed nutritional supplements and had allergy testing. This testing for food allergies/sensitivities through blood tests showed a number of significant allergens. I changed my diet and eliminated certain foods, which had never bothered me before. Again, lots of money was spent, but after a few months, I didn’t see any changes in my voice problem from the adjustments, supplements nor change in diet. My doubt was reinforced when I spoke with a friend who is a nutritionist and knew of this practitioner. She, too,  questioned many of the recommendations. Other than my voice disorder, I was feeling fine, so I chose not to continue with this therapy.  

Voice Doctor: Following online research, then watching his DVD and listening to a tape, I had a consultation with Morton Cooper.  Dr. Cooper is not a medical doctor, but his specialty is speech and vocal disorders. I was heartened by his past experience with spasmodic dysphonia patients. He talked about correct breathing, reverse breathing and the necessity for concentrated therapy. His perspective is on the mechanics of speech, that this is not a neurological problem and how the ENT medical community does not support his success. With the hope that his success with others would also include me, I went to him for long therapy sessions. The therapy sessions focused on vocalizations and breathing techniques yet were tedious and very costly. After about 6 weeks, I chose to stop these voice therapy sessions as I wasn’t feeling/hearing much difference. 

Acupuncturist

I had never had acupuncture before, but was very open to this recommendation. For years I had read about and used some forms of acupressure, and believed in its premise. So, I met with an acupuncturist, who, though she had never worked with someone with spasmodic dysphonia before, was willing to see if it helped. I had a number of sessions, even with electrical current , and sometimes felt generally better for a short time afterwards. But, again, there was no difference in my voice. The chi was flowing, but my voice wasn’t working.

Breathing musically

I’ve never been musical (except singing with young children who don’t mind if you can’t sing) but one of my favorite instruments has been the harmonica. It must go back to my Chicago roots. As I considered my breathing in relation to my voice, I thought that maybe doing something like playing the harmonica might help.  I already had one harmonica, and another one came with a ‘how to play the harmonica’ DVD. As I began playing, my 3-year old granddaughter showed interest, so we became a duo. I put on blues music and we play the harmonica. Great fun, but there was no difference with my breathing and voice.  Perhaps playing the blues is better than feeling it with this problem.

Next: Seeing another specialist, in search of an answer….

3. Medical testing and discoveries

Thinking back to when possible signs and symptoms of a voice disorder appeared, I recall about five years ago when I was feeling upper chest discomfort. At that time, asthma, anxiety and thyroid problems were ruled out, and my blood pressure was fine (it’s always low).  These waves in my upper chest to throat area were happening randomly and not during exercise.  So, my doctor asked for an EKG…. It was an interesting experience; nothing abnormal appeared and my heart appeared to be fine. A few years later, I had new health insurance and a new doctor (who was actually a doctor that I had a few years back and knew me to be in good health). Now, my voice was going in and out of strength and my doctor heard the changes in my voice. The tests began...

• First was a breathing test, with a spirometer.  This machine tested my lung capacity and the amount of air that I was producing as I breathed, and nothing abnormal appeared.                                 

• Some time passed, and my voice was getting progressively inconsistent . I began doing research online, and made some discoveries:

         1.there were others who had a similar problem
         2. it’s more common among women
         3.there’s  a high percentage among Ashkenazi Jews (like myself).

Surprised, I contacted my relatives to see if anyone recalled  family members who had a vocal problem.  I then went back to my doctor with this new-found knowledge. I found the disorder ‘spasmodic dysphonia’ online, and was somewhat relieved that I wasn't imagining the problem.  

• Next step, a referral to a local ENT specialist. Before I knew it, this doctor put a scope in my nose and down my throat to see what was going on. He said that there were no visible growths: nodules, polyps, or thank goodness, signs of something abnormal like cancer. As this doctor was talking into his dictaphone the whole time,  he never labeled the problem and said that I need to see a speech therapist.

• Then, there were weekly visits with a speech therapist at the local hospital. I learned various exercises and suggestions for a healthy throat. A friend, who is a speech therapist, was kind enough to also meet with me to try to alleviate the problem.  These methods might have worked with a different situation, but it just wasn’t making much difference in my vocalizing.

• After no progress, I then got a referral for the ENT dept. at UCLA. I was hopeful that I would now find out what was wrong, and what could be done about this voice disorder. So, I had a second endoscope exam, this time with a team of doctors. The doctor then said, looking at the monitor, “this is classic spasmodic dysphonia”.  One of the doctors admitted that it might be genetic, but nevertheless, the head doctor said that there’s no cure. I could either have Botox injections into the laryngeal muscle, which he was ready to do at the time, or surgery. He explained how the surgery would re-route a nerve in my larynx.

 I said “ thank you, but I need to think about this” and left.

Next step….. Alternative therapies